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- Read Amy Brenny’s Care Pages Posts Below -
(Her Diary on Severin’s Journey)
Start in March 2003       May  - July 2004


Severin Grant Brenny was born September 23, 2002 at the U of Michigan, with Hypoplastic Left Heart Syndrome (HLHS). Affecting about 1000 babies born in the US each year, in HLHS children for an unknown reason the left side of the heart does not develop. The survival rate at 3 - 5 years is just 60%. With a tough road ahead, Severin courageously began his  journey. At just 9 days old he underwent the first of three surgical procedures so his heart could continue to sustain his precious life.  

After more than one month in the hospital, Severin was finally able to come home. With medicine every three hours and getting his nutrition through a feeding tube, life was challenging, but Severin started to grow up and become an irreplaceable part of the Brenny Family.                                                                                                                            
Just when life was becoming routine, Severin went back to the U of MI hospital, for a second major surgery to help his heart continue to grow with him. The Brenny family relocated to Michigan for a 10 day hospital stay. After returning back to Minnesota, life for this little boy was filled with doctor’s appointments, therapy sessions, and taking medications in addition to the play time.                                      

Then in May of 2004 Severin and his family traveled back to Michigan for the third and final phase of the surgical series. After 50+ days in ICU fighting infections and numerous ups and downs, at the age of 22 months Severin went to heaven on July 17, 2004. Such a young boy, such a difficult journey, and so many lives touched.  
                                                                    
Severin leaves behind his loving parents Chad and Amy Brenny, sister Lauren and twin brother Carson. This benefit is to honor and support the family of Severin Brenny and to help cover the expenses they incurred during their journey with Severin.

Brenny Family Posts at CarePages.com

     Go to May 2004
 

March 16, 2003 at 09:10 PM CST   (back to top)
HELLO ALL! IT IS HARD TO BELIEVE THAT WE ARE BACK IN MICHIGAN ALREADY. JUST WANT YOU TO KNOW THAT CHAD, SEVERIN AND I ARRIVED SAFE & SOUND AND ARE WINDING DOWN AFTER A LONG CAR RIDE. WE HAVE TWO FULL DAYS OF DOCTORS APPOINTMENTS BEFORE HIS HEMI-FONTAN SURGERY ON WEDNESDAY. LAUREN & CARSON WILL BE JOINING US IN ANN ARBOR ON TUESDAY...THEY ARE FLYING OUT WITH GRANDMA, GRANDPA(BRENNY)& AUNT TINA.
PLEASE FEEL FREE TO SHARE SEVERINS CARE PAGE ACCESS INFO AS WE DID NOT GET EVERYONES EMAIL ADDRESS BEFORE WE LEFT. WE WILL TRY AND KEEP EVERYONE UP TO DATE THESE NEXT SEVERAL DAYS. SEVERIN IS SUCH AN AMAZING LITTLE BOY! ALL OF YOUR PRAYERS ARE SO APPRECIATED! PLEASE KEEP BENJAMIN IN YOUR PRAYERS, HE GOT HIS TRANSPLANT AND IS MAKING PROGRESS EVERY DAY, ALSO THE LUFF FAMILY AS BO IS ALSO HAVING HIS HEMI WEDNESDAY HERE IN MICHIGAN. GOD BLESS!

BRENNY BUNCH

March 19, 2003 at 03:45 PM CST
HELLO EVERYONE, JUST A QUICK UPDATE TO LET YOU KNOW THAT SEVERIN IS OUT OF SURGERY. HE FLEW THRU SURGERY AND THINGS WENT VERY WELL! HIS SURGEON DR. BOVE CAME TO TALK TO US AND WAS ACTUALLY GRINNING! HE IS IN THE PICU. IF THINGS STAY GOOD THEY WILL TRY AND EXTUBATE HIM IN THE MORNING. I WILL GIVE YOU MORE INFO LATER, I JUST WANTED TO GIVE YOU AN UPDATE.

AMY

March 20, 2003 at 04:51 PM CST
HI EVERYONE, HERE IS THE LATEST ON SEVERIN. HE IS DOING PRETTY WELL ALTHOUGH HE IS RETAINING FLUID....WE THOUGHT HE WOULD BE OUTPUTTING MORE BY NOW. THEY GO BY SEVERINS DRY WEIGHT BEFORE SURGERY WHICH WAS JUST UNDER 11LBS. HE IS NOW UP OVER 2LBS WITH FLUIDS. WE WERE TOLD THEY WOULD WAIT AND PROBABLY EXTUBATE HIM ON FRIDAY BUT TO OUR SUPRISE THEY WENT AND EXTUBATED HIM TODAY AS HE WAS BREATHING ON HIS OWN WHEN THEY DID HIS SPRINTS (BREATHING EXERCISES)...ONCE AGAIN HE FAILED (IT TOOK THREE TRIES LAST TIME)SO HE IS BACK ON THE VENTILATOR. IT IS PRETTY DISAPPOINTING TO SEE THIS HAPPENING AGAIN. I WON'T CALL IT A SETBACK UNTIL TOMORROW....THEY THOUGHT HE WOULD FLY SO THEY WERE ALSO VERY DISAPPOINTED!(NOT QUITE AS BADLY AS MOM AND DAD)! IT WOULD BE GREAT IF HE MAKES IT TOMORROW....IT WOULD THE BEST BIRTHDAY PRESENT THAT I COULD EVER WISH FOR! TOMORROW CHADS PARENTS AND SISTER ARE LEAVING BUT MY FRIEND MELODY WILL BE FLYING IN TO HELP TAKE CARE OF CARSON AND LAUREN, WHAT AN ANGEL! CAROL WILL BE BACK OUT ON MONDAY. THAT IS ALL FOR NOW....PLEASE KEEP SEVERIN IN YOUR PRAYERS! WE HOLD ALL OF YOUR THOUGHTS AND PRAYERS CLOSE IN OUR HEARTS! IT MEANS SO MUCH TO US!

GOD BLESS YOU ALL!

AMY, CHAD, LAUREN, CARSON & SEVERIN

March 22, 2003 at 03:25 PM CST
We’ll today has been eventful. Chad got to see Severin for a short period of time this morning and then had to wait another three hours because of procedures on other kids. We finally got to see Severin at 1:30 pm MI time. He was tube less (he was extubated - off the vent) he is looking great, he dropped most of his fluids over night and is looking like our little man. He is very happy to have his pacifier back instead of that tube. We are once again very excited. As you may have noticed a new picture has been posted. Once again thank you for all your thoughts and prayers as they are much appreciated.

We’ll update everyone again later.

God bless,

Chad, Amy, Lauren, Carson & Severin
March 23, 2003 at 05:19 PM CST
Severin is doing well. They were going to move us today to moderate care but there were no beds available, so tomorrow seems like the day. He seems very content as long as he has his nook (he loves that nook). Its hard to get excited today because the unit has been closed most of the day. A couple of little girls are not doing so well. Please keep them and their families in your prayers. Your prayers mean so much to all of us. These little people, and their families need all the help and support they can get. These are very trying times for all.

God bless,

Chad, Amy, Lauren, Carson, Severin

March 29, 2003 at 09:49 AM CST
HIP-HIP-HOORAY...WE ARE HOME! WELL WE ACTUALLY ARRIVED HOME ON THURSDAY AFTER OUR LAST MINUTE PACK-UP ON WEDNESDAY EVENING. SORRY ABOUT THE LATE WORD BUT I HAD A TOUCH OF THE FLU I THINK I PICKED UP AT THE RONALD MCDONALD HOUSE....IT WAS GOING AROUND THERE.

ON SUNDAY SEVERIN WAS MOVED TO MODERATE CARE. HE WAS JUST HANGING OUT GETIING HIS ORAL MEDICATIONS AND FEEDINGS BACK UP TO SPEED. ON MONDAY THEY PULLED HIS CHEST TUBE AND SOME OF HIS LINES. HE WAS SO HAPPY! (JENNIFER, I CAN ONLY IMAGINE HOW BENJAMIN WILL FEEL TO HAVE HIS OUT ONCE AND FOR ALL!)

WE WERE GOING TO HAVE A SWALLOW STUDY WHILE WE WERE IN MICHIGAN, BUT THEY COULD NOT GET IT SCHEDULED UNTIL FRIDAY SO WE CAME HOME AND WILL HAVE IT DONE AT ST. PAUL CHILDREN'S ON TUESDAY. KEEP YOUR FINGERS CROSSED....SEVERINS REFLUX DAYS WE THINK ARE NOW BEHIND HIM....NO EPISODES SINCE BEFORE THE SURGERY! HE JUST NEEDS TO GET THE HANG OF SWALLOWING AND EATING LIKE THE REST OF US! THIS WOULD PROBABLY HELP TAME HIS ENERGY LEVEL WHICH IS OFF THE CHARTS SINCE THE SURGERY. IT WOULD HELP MOM AND DAD IF HE WOULD BURN A FEW CALORIES EATING...HE MIGHT SLEEP A LITTLE BETTER AT NIGHT...THEN MOM AND DAD WOULD TOO.

THE CHANGES IN SEVERIN ARE TREMENDOUS. HIS COLOR IS BETTER....HE HAS A TON OF ENERGY!!!! HIS REFLUX SEEMS TO HAVE DISAPPEARED....YOU CAN TELL JUST BY LOOKING AT HIM THAT HE FEELS SO MUCH BETTER.

IT WAS SUCH A GREAT FEELING TO BE BACK IN MICHIGAN THIS TIME. OUR EXPERIENCE WITH THIS SURGERY WAS SO MUCH BETTER THAN WITH THE NORWOOD. MAYBE WE WERE JUST SEASONED VETERANS THIS TIME. I CAN ONLY TELL YOU THAT MICHIGAN IS A GREAT SECURITY BLANKET FOR US...KNOWING THAT SEVERIN WAS BEING CARED FOR BY SUCH GREAT DOCTORS AND NURSES, WE BROUGHT HIM THERE FOR THAT VERY REASON.

I STILL CAN'T BELIEVE ALL THAT OUR SWEET LITTLE BOY HAS BEEN THROUGH, YET HE CAN LIGHT UP OUR HEARTS WITH ALL OF THE SMILES THAT HE GIVES....IT IS HARD TO BELIEVE HE HAD OPEN HEART SURGERY JUST OVER A WEEK AGO. THERE WERE SO MANY REMINDERS OF THE STRUGGLES WE WENT THROUGH WITH SEVERINS FIRST TRIP IN MICHIGAN. THERE WERE SO MANY NEW FAMILIES GOING THROUGH WHAT WE HAD ALREADY EXPERIENCED. WHAT HOPE OUR SEVERIN WAS FOR THEM, JUST SEEING HIM AT SIX MONTHS WAS A LIGHT FOR THEM TO DRAW FROM FOR THEIR LITTLE ONES. IT IS TRULY HEARTWRENCHING TO SEE THESE FAMILIES ON THIS HUGE ROLLERCOASTER (NORWOOD) I SHARED MANY EMBRACES AND TRIED TO OFFER WORDS OF REASSURANCE WITH THEM THAT THEY TOO WOULD SEE THIS DAY.

PLEASE KEEP US AND ALL THESE OTHER FAMILIES IN YOUR HEARTS AND PRAYERS. THERE ARE SO MANY LITTLE ONES AND THERE PARENTS THAT NEED ALL OF YOUR PRAYERS RIGHT NOW! SEVERIN HAS MADE IT THROUGH THIS NEXT STAGE BUT STILL HAS LOTS TO OVERCOME IN THE DAYS AND YEARS AHEAD. WE THANK GOD FOR GIVING US OUR LITTLE MIRACLE BOY.

WE CANNOT EVEN BEGIN TO THANK EVERYONE FOR ALL OF YOUR LOVE AND SUPPORT YOU HAVE GIVEN TO US! YOU HAVE NO IDEA WHAT IT MEANS TO US! YOU ARE ALL ANGELS TO US!

GODS BLESSINGS TO ALL AND YOUR FAMILIES,

AMY, CHAD, LAUREN, CARSON & SEVERIN

April 08, 2003 at 06:14 PM CDT
HELLO EVERYONE! JUST A LITTLE UPDATE ON SEVERIN. HE IS FEELING PRETTY GOOD THESE DAYS. HIS HEADACHES ARE TAPERING OFF LITTLE BY LITTLE. LAST TUESDAY HE HAD A SWALLOW STUDY DONE TO SEE IF HE STILL ASPIRATES FOOD ORALLY. THIS SHOWED THAT HE IS NOW PROTECTING HIS AIRWAY WHILE SWALLOWING THICKER FOODS (RICE CEREAL) HE DOES HOWEVER STILL HAVE A LITTLE DIFFICULTY WITH THE THIN LIQUIDS(FORMULA). THIS IS GREAT NEWS AND WE ARE MARCHING FORWARD WITH HIS ORAL THERAPY. SLOW BUT SURE WE ARE VERY OPTOMISTIC THAT HE WILL BE RID OF HIS N/G TUBE. WE GO ON FRIDAY TO SEE HIS CARDIOLOGIST AND WILL LET YOU KNOW THE LATEST AFTER HIS VISIT. THANK YOU ALL FOR YOUR CONTINUED SUPPORT, THERE ARE NO WORDS THAT CAN EXPRESS OUR GRATITUDE AND HOW MUCH IT MEANS TO US! PLEASE KEEP OUR FRIENDS BENJAMIN & BO IN YOUR PRAYERS. BENJAMIN IS STILL IN THE HOSPITAL AFTER HIS TRANSPLANT AND WISH FOR A FULL RECOVERY SO HE CAN GO HOME SOON! HE HAS BEEN IN TWO HOSPITALS 6 OUT OF 7 MONTHS. LITTLE BO WAS AIRLIFTED BACK TO MICHIGAN TODAY FROM TENNESEE AND WE WISH FOR A QUICK RECOVERY FOR HIM ALSO(HE HAD HIS HEMI-FONTAN THE SAME DAY AS SEVERIN). HOPE YOU ARE ARE DOING WELL!!

GOD BLESS,

AMY, CHAD, LAUREN, CARSON & SEVERIN

May 14, 2003 at 07:50 PM CDT
Hello everyone, just thought we would give you an update on Severin, sorry for the delay. I wanted to get this new picture scanned of the trio from Easter….yes it is a real lamb!

Severin ‘s cardiologist told us that he was no longer a post-op patient and said he would not need to see him until June! We did however have to take him back in before this due to an infection with his incision. It was the underlying stitches that must have caused this. He just finished off his round of antibiotics and things are looking fine.

His feedings/therapy has been very discouraging. He has oral aversion and will not suck from the bottle. He just cannot get it that his aspirating and reflux days are in the past. On May 22nd he will be going to see Gastroenterology which will probably lead to discussion about surgery for a permanent feeding tube. We are not looking forward to another surgery but we hope that this will be short term, how nice it will be for Severin not to have his cheek taped up or the tube down his nose irritating the back of his throat.

On Tuesday early childhood & development from the school district came out to evaluate Severin. There was an occupational & physical therapist checking him out. In two weeks they will be back to have a planning meeting on what goals we want to set for Severin and they will be working with him to catch him up on reaching those so important milestones. He is doing really well considering all of his down time recovering from surgery, but does have struggles with some of the gross motor skills (sitting-up). It will be great to have them coming to our home to work with him.

We count our blessings every day having our amazing little miracle boy! Words cannot describe the changes in him since this latest surgery….his color, energy level, he just looks & feels so much better! There is never a dull moment in this house with two very curious playful almost eight month olds in the house.

As always we ask that you keep Severin in your prayers and ask that you keep some other families in your prayers as they are in the hospital. Benajamin Dillard, hopefully will be going home in the near future. Rachel, as she awaits a heart transplant in MI.

We will update again soon when we find out about his surgery date!

God Bless!

Amy, Chad, Lauren, Carson & Severin

May 22, 2003 at 11:25 PM CDT
Breaking News!!!!!! Our friend Benjamin Dillard is finally home!!! What a wonderful day!!!!!

Today was such a busy day! We went to see Gastroenterology about a PEG(feeding tube) for Severin. Severin's Dr. is at Minneapolis Children's hospital next week so surgery is scheduled for Tuesday, wow that was fast!!! Needless to say it was hectic this afternoon trying to get everything lined up or switched around while we were on our way out of town for the holiday.

This is a small surgery compared to his two open heart operations that he has been through but, nonetheless we are very nervous about Tuesday. As a parent it is never easy to see your children go through any type of procedure.

We will update you Tuesday after surgery. Please keep Severin in your thoughts & prayers...also, Halle & Rachel friends still in Michigan!

Hope everyone has a wonderful & safe holiday!

God Bless,

Amy, Chad, Lauren, Carson & Severin

May 27, 2003 at 09:03 PM CDT
Hi everyone. HAPPY BIRTHDAY TO YOU GRANDMA FLORENCE!! Severin had surgery today to have a g-tube put into his tummy. It was a quick uneventful trip thru the operating room!! We thank the Lord!! He is now resting comfortably thanks to morphine (I am sure he thinks this is a cake walk after the Hemi headaches he had after his Hemi-Fontan surgery in March). Tomorrow they will introduce his feedings thru the tube and see how his tummy tolerates it. We anticipate two nights in the hospital and if all goes well we will bring him home on Thursday. In two or three months we will be back in here again to replace the g-tube in his tummy with a button (kind of like a gas cap on your car) it will be flush with his tummy and we will just flip the cap open....right now it is a longer tube that is placed in his tummy. We are hopeful that he will not need this too terribly long! Once he eats, maintains & gains orally they will remove the button. Chad has gone home for the night and I am on night duty....Carson & Lauren are at G&G Brenny's for the night....Wow is dad lucky to get a night of uninterrupted sleep....it has been months & months!!! The boys turned 8 months on Friday and this is the first time that Severin has been tubeless!!!
God bless,
Amy, Chad, Lauren, Carson & Severin
May 30, 2003 at 09:09 PM CDT
Hello everyone, just wanted to let you know that Severin is now home and feeling pretty great. He was back to himself keeping us up late last night, and of course getting us up early. He will continue his therapy and hopefully will realize at some point that food tastes yummy! Hope everyone has a great weekend and we will update again soon!

God bless,

Amy, Chad, Lauren, Carson & Severin

July 04, 2003 at 03:20 PM CDT
Happy 4th of July everyone. Just wanted to give you the latest update. I have a few things in the works right now regarding Severin. His feeding therapy has been regressing lately. When we were in Michigan in March, I happened to save this airline magazine with an article about NWA kid cares program. It was about a family who traveled from CA to OH due to her child's feeding difficulties....the reason I kept the magazine was the program that the airline has where people can donate there flyer miles to the kid cares programs for families to use the miles when traveling out of state for medical reasons. I kept it for that reason. At Severin's last therapy session we came to the conclusion that his dysphasia (difficulty swallowing) is getting much worse instead of better. So there came that article from NWA into my thoughts, recalling about the story I had read. Yesterday I made several calls regarding the bioelectrical (a non invasive treatment that stimulates the facial & larynx muscles) therapy they do for dysphasia. One call was to the University of Cleveland. This is the only place offering this new FDA approved treatment right now. Later in the day I received a call back & talked to the therapist who started this program. I asked what kind of back log they had in getting him in. It turns out that in a mere five weeks they will be relocating to Washington state. So we are hopeful to be dashing off to Cleveland before they make there move. So the next update you read will hopefully be coming from Ohio.

Other than that he is doing very well. Just one year ago we were devastated with the news that our baby "B" had a fatal heart condition and were not given any hope that he would be with us here today. It was a bumpy ride out of the gate but God has truly blessed our family. Please keep Severin in your prayers as we will hopefully soon embark on this new journey. We also ask that you keep Rachel, Logan & Jonathan in your prayers as they have been hospitalized since March, and there familes are separated with dad's & kids back home.

God bless,

Amy, Chad, Lauren, Carson & Severin

July 25, 2003 at 09:55 AM CDT
Hi everyone, just thought I would let you know that this update is coming from MN not Ohio. We could not get into the program in OH before the move to WA. So now we have several different things that we are pursuing.

First and foremost Monday Severin will have surgery to replace his PEG with a button. This is his feeding tube that he had in May. Right now it is a long tube that they will switch out to something that will be more flush with his tummy, like a flip cap. This will be same day surgery so we will bring him home on Monday.

Then on August 5, we will be talking to Richmond Children's hospital in Virginia via satellite. This is a conference with the team out there that will observe Severin eating(not eating really) and they will determine if he meets the criteria to come to VA to their day feeding program. If accepted....of course we will be!! Severin & I will go to VA for 6-8 weeks!!!!! Yes this is a very long time and very far away from home!!! Unfortunately there are not very many feeding programs out there....turns out they are not $$$ makers! It would probably be mid-end of September when we go there.

We are still considering going to WA first for the e-stim treatment...we will just wait & see how the conference goes and see what they recommend. We will also be going to U of MI in September for some research appointments. These are just follow up appointments from his Norwood procedure and we will just be out there for one night.

Other than Severin's feeding issues he is doing great! So is Carson & Lauren...just the regular 3 year old testing the limits stuff!
Dad & mom...tired all the time!!

Please keep Severin in your prayers, although a small procedure...any surgery your little one has to go through is tough! Also please keep Rachel, Halle, Faith & Logan in your prayers. I will update again when we know more about where & when.

From our hearts to yours,
Amy, Chad, Lauren, Carson & Severin

July 29, 2003 at 12:12 PM CDT
Hello to all. Severin had his button operation yesterday and is doing well. BIG SIGH....NOT OF RELIEF! Many of you are aware that we have felt that things have gotten worse for Severin since he had gotten the PEG back in May. Prior to surgery yesterday we spoke to his surgeon. She was already aware that the PEG we felt had not been an improvement over the NG tube for Severin. She was hoping that we would like the button a little better as other families have been really pleased with the G-tube/button/PEG. During the procedure she was going to take a peek in his stomach to see why he was having so much trouble with the reflux/gagging. After speaking with her post-op she told us what the problem is.....It seems that his PEG was initially put in closer to the opening of the small intestine than where they are usually placed. This is what is causing his problems.....can this be fixed you asked? Not really! I imagine this would take several months to let it heal....go back to the ng-tube (down his nose) and then two surgeries again. We were not given this option as she feels with time & growth this will get better......we have no idea how long this will be. We have others friends who love having the g-tube. This was a error....we do not know how or why. August 5, we will have the satellite conference with VA and go from there. The feeding issues have been very discouraging for us & other families....not knowing what resources are available. Our feeding clinic did not even know about this program in VA.

Everyone has those "what if" times in life....this is one of them....what if we had known of this program before we were pushed into this permanent feeding tube? Unfortunately we cannot go back....and of course we know how blessed we are just by all of the other families we know who have had or are in far worse situations than this. It still does not make it easy and is quite a hearbreaker to watch our little guy get so violently ill...daily!

Thanks for letting me get that of my chest!!! Sorry!

Prayer request for the Frank family as Halle is having problems post Hemi-fontan surgery from Friday.

God bless,

Brenny bunch

August 21, 2003 at 08:56 PM CDT
Hello everyone, no big news other than we did have the satellite conference with Virginia. Severin has been accepted into the day feeding program although his reflux needs to be under control first. This means that we will not be going anytime soon! We are trying some different things that are showing no improvement, switching formula, increasing the reglan and will have the GI study on Monday...this is the second attempt as the first try he threw up and that was the end of that. We are doing this under the recommendations of VA although we already know the cause of the reflux is from the feeding tube placement.

I would like to invite all of you to watch Dateline NBC Friday August 22...as they followed a hlhs baby from diagnosis through surgery. I am sure this will give a great appreciation to what these babies have gone through and what miracles they truly are. I know we will be watching with the tissues at hand as this will surely touch our hearts as we think of Severin and all of the other babies we have met through this journey.

September 14-15 we will return to U of M for some research appointments. These are just follow up appointments from his first Norwood surgery. As always we ask for your prayers for Severin. We still request that you keep Rachel & her parents in prayer as she still awaits a heart transplant in MI and this family is separated. Logan we met in March and is still in MI, he needs to get bigger for his second sugery. Marybeth & family as she is a hlhs baby and this family has gone through this with 2 other children.

God Bless,

Brenny bunch

September 18, 2003 at 10:05 PM CDT
Hello,

We just returned from Michigan on Tuesday. It was a very bittersweet trip. We visited with some of our favorite staff. Who are amazing to us, they truly are angels working in such an extremely stressful environment where everything with these babies is minute to minute. It is hard to imagine that the next time we go to Pod "A" it will not be a social visit.

Severin is doing well. He enjoyed the “only child” moments he had with us in MI. We have no news on going anywhere to a feeding program as his reflux is still an issue. He saw his cardiologist in MN two weeks ago who shocked us by saying we could be heading off for surgery in 6-12 months. I was not even thinking of surgery until age 2. However, talking to Cyrus a cardiology fellow we know (okay you are our favorite), he says the bigger the better age 3. I am starting to lean towards this. We will know more in December…..that is the next cardiology appointment.

We also saw Jennifer & Faith Forrest, Faith is also an hlhs baby who was born just a few days before the boys. They live in MI and had her appointment scheduled for the same time so we could see them. It was great to see them, wish we had more time!

It was hard to go back to MI knowing that three families from our March trip were still there. I tried to be strong (and was not at all).... my heart just aches so badly for them. They are all truly amazing families whose faith & strength is leading them all through this extremely difficult journey. Rachel Hooten is a very sick little girl waiting for a heart transplant, finding a match for her is very difficult, with all the antibodies she has built up from blood transfusions. Jonathan Hall is also a very sick little boy who is having problems with one of his lungs, prayerfully a trip to the cath lab next week will bring positive results for this family. Logan Pope is too a very sick little boy who awaits his stage 2 Hemi-fontan surgery, right now he is fighting off infections so he can have his heart cath and then surgery. These families are separated as the dads/husbands are back in TN & TX working and taking care of older siblings. Please keep these families in your prayers. We also ask that you keep the Hoagland family in prayer as sweet little Ella is an angel in heaven and their mother is very ill with cancer. They are another truly amazing family that always reminds us that “God is good, all the time.”

May God bless you all!

Brenny bunch

September 23, 2003 at 09:16 PM CDT
THE BIG ONE!!!!!!!9/23/03 Hard to believe it has been 1 year!

LOOKING BACK BRINGS HAPPY MEMORIES...
CELEBRATING TODAY BRINGS A THANKFUL HEART...
YOU HAVE BEEN AND STILL ARE
TWO OF THE GREATEST BLESSINGS
GOD HAS GIVEN.

Just posted a few pics.

God bless,

Brenny bunch

November 09, 2003 at 10:11 AM CST
Just a post to share a few things with all of you. Severin is doing well. He goes to his cardiologist in December for an echo. We will post then about any news. His feeding issues are the same so we are still "on hold" for any feeding program. In October we had a "meet & greet" for the boys. It was a beautiful day shared with family & friends, our greatest supporters.

I wanted to let you know about a TV show Monday night, many of you recall we asked for your prayers for our hlhs friend Benjamin last January when we was hospitalized with RSV and awaiting a heart transplant. What a gift this family has given sharing the most stressful uncertain time in their life with the world. It is a great opportunity for you to see his story.

(below copied from Benjamin's care page)
This coming Monday Benjamin will be on a television show called “Resident Life” on TLC (The Learning Channel). The show highlights Residents and Fellows who were training at Vanderbilt this winter and spring, and Frank Scholl, a cardio-thoracic surgery fellow, was one of the doctors that TLC followed for several months. Frank was the one to go to Memphis to harvest Benjamin’s heart, and assist in the transplant, so that is why Benjamin is making his TV debut! The show focuses on four doctors this coming week, and each segment follows one patient’s progress—Frank’s patient was Benjamin.

Brad and I had a lot of trepidation about being involved with the show, for fear that it might be “over-dramatized,” but we thought it would be an opportunity to possibly help other HLHS parents who need hope, and to spread the word about organ donation.

The producer sent us a copy of the show this week, because I was very nervous and anxious about the show, as it got closer to airing. I was wondering what in the heck we were thinking, to re-live that emotional time on national television, but they did a pretty good job of telling his story accurately and tastefully. I must say that I sound like a “hick”—I’m sure everyone at the U of Michigan already knew that,:-) coming from TN , but I was pretty shocked at what a redneck I sound like! They do refer to him as “Ben Dillard” though, which bothers Brad and me—he’s “BENJAMIN!”

The show enabled us to find out a little more about Benjamin’s donor (that we wouldn’t have been permitted to know otherwise), and let us see our child’s transplantation surgery—interesting! They even showed the surgeons removing the old heart (and Dr Bove’s beautiful work!) and it’s last beat, outside the body. I don’t think I have words to describe how we felt watching that.

Benjamin was in the hospital so long, they didn’t get to film him coming home and going to his cardiology check-ups as planned, which is a shame because he was still so sick looking when they finished filming. He looks so great and so normal now!

Here’s the info on the show, which is Monday and replays again on Saturday:

TLC
Mon, Nov. 10, at 8 p.m. Central
Sat, Nov. 15, at 3 p.m. Central

Please as always we ask for your prayers for Rachel & Logan and their families as they are extremely critical. May there faith continue to lift them up & give them strength & guidance in the days ahead.

From our hearts,
Amy, Chad, Lauren, Carson & Severin

November 26, 2003 at 05:59 PM CST
Happy Thanksgiving. We have so many blessings that we are thankful for in our family. I hope everyone has a safe and happy holiday.

Please take a moment to say extra prayers for Rachel & JT whom are both hospitalized.

(the following is copied from Rachel's care page):
Rachel is having a very difficult day. Around 12:30 PM today she had cardiac arrest. The doctors think she may have another one within twelve hours. We ask all of you to pray for Rachel and Tracy and Matt and all of the family. The road has been long and difficult for Rachel and her family but we work on GOD's watch and HE is never late. May God grant Tracy and Matt and the family peace and rejoice in all the love everyone has shown them.

Posted for the Hootens by Rachel's Grandmother Quinn



We ask for your prayers for a few families we met in Michigan that are dear in our hearts, whom have lost a loved one. The Hoagland's who lost sweet baby Ella & Nana Carole. The Pope's who just last weekend held a memorial & celebration service for their sweet baby Logan. I can only speak from my experience of losing my father & brother-in-law how difficult that first Thanksgiving & Christmas was not having them with us in an "earthly way" although they are with us always in "spirit".

God bless,
Amy, Chad, Lauren, Carson & Severin

November 27, 2003 at 05:20 PM CST
Shortly after my post last evening Rachel passed on. Please keep her amazing parents Matt & Tracy in your prayers.

God is good. All the time.

Love,
Brenny's

December 12, 2003 at 04:23 PM CST
Severin had a cardiology appointment last Thursday. They did an echocardiogram of his heart and confirmed what we already knew, how well he is doing!! Hard to believe that his third open heart surgery the fontan is right around the corner. Dr. Bove his surgeon likes to do the fontan at 18-24 months. I have posted before about wanting to wait until age three, but the graft they use in the fontan is not anything that age or size will have any factor in. We are looking at early June heading to MI. They will do a heart cath the day before his surgery. We think this recovery process will be longer that his hemi-fontan, we are planning for this to be about a three week stay. It easily could be shorter or longer depending on variables. Severin is doing awesome! Yes of course there are still the feeding issues at hand. We do know that someday he will be an "oral" eater. Things could be worse!

Yesterday we had quite the experience for pictures for the boys & Lauren. How exhausting! Everyone was all happy & smiles.....that was a very small window of opportunity that was missed! We made it through the shoot.....boy what a challenge to get three kids happy & smiling together. Hopefully we will get them posted soon!

Here we are in the Christmas season and I find that it has been very challenging to get into the spirit of the season. We have so many blessings that we thank God for everyday. I find myself shedding so many tears of sorrow for the families of Rachel, Logan, Ella, Samuel, Lexi, Michael, and so many others. Meeting these families although some were brief, they have touched our lives in such great magnitude. What gifts these babies have given our life. Please pray for the family of JT Hall, his parents Michael, Heather and sister Ashely. He is hospitalized at Vanderbuilt in Nashville and along with his hlhs his left lung is not functioning. He is not a candidate for a transplant or the third surgery and now they are making arrangements for hospice care to bring him home.

I remember when we first received the news that “baby b” had a fatal heart defect. I recall going to renew my drivers license that summer and the little box you check to be an organ donor truly has so much meaning to my family personally. Donations we make to organizations now, I check first to see if we can direct it to research for congenital heart defects. I know there are things that I can do to make a difference. Severin has already particpated in research at the U of MI that will help babies in the future. We pray for a day that no family will have to go through this.

We are so thankful for all of our family & friends we have supporting us through this journey. We hope this update finds all of you & your loved ones well. We will update again on JT as we know more. We hold Hall’s and the families mentioned above, including you in our hearts & prayers!

God bless!

Amy, Chad, Lauren, Carson & Severin
 
January 19, 2004 at 01:35 PM CST
February 14 is "A Day for Hearts" congenital heart defect awareness day. Please help support all efforts to raise awareness for continuing research and funding for CHD's. Please take a moment to copy & paste the link below and sign this petition to President Bush.

www.petitiononline.com/chd2004/petition.html

From our hearts to yours,

Amy, Chad, Lauren, Carson & Severin

February 03, 2004 at 10:08 AM CST
Hello everyone. Just thought I would share some of the exciting things that have been happening in the Brenny household. Severin’s reflux is GONE! Wow, after eight long months. It is great to see him feeling so much better. Prayers answered! Now that he is feeling better we can definitely see the changes in him. He is ON THE MOVE! We have a crawler now, he likes to stand & cruise the furniture, and roll around and hang out on his TUMMY! These are all new developments that are all happening now that the reflux has dissipated. He is a new little boy, the changes are tremendous and we are so thrilled!

May 26, 2004 is Severin’s surgery date for the Fontan. It weighs heavy in our hearts and thoughts to have to go back to Michigan and hand over our precious little boy for a major open heart surgery.

On Sunday Chad’s Grandmother Dorothy Spiczka passed on. We will be celebrating her 85-year life and legacy this coming Wednesday and Thursday. It was almost 21 years to the day that her husband passed away. What a glorious reunion they are having! It gave me great comfort to read Psalm 23 to her on Sunday a few hours before she passed on.

JT Hall (heart friend from MI) is now in St. Louis awaiting a heart transplant. He has suffered a major stroke. Please pray for JT to pull through this as he has amazed all who know him with his strength.

We thank you all for your continued support & prayers for our family. Just want those to know who do not live in MN that we have been experiencing the coldest weather we have had in the past 5-years right now it is a balmy –4 and probably a –20 windchill. It did warm up into the 20’s yesterday so it could snow about 12+ inches. Cabin fever is running at extremely high levels in this house! God’s peace & blessings to you all!

From our hearts to yours,
Amy, Chad, Lauren, Carson & Severin

February 11, 2004 at 03:45 PM CST
Hi everyone, I have very sad news to share. It is always hard to know which should be first. So I will start at the beginning of this post as how life begins. In March while in MI for Severins second surgery we met so many great families starting out on this journey of hlhs with their babies. Jonathan(JT) Hall was born March 10, 2003. He spent much of his life at U of MI and we had the great pleasure to visit him and his mother Heather when we were back out there in September. It is with tears that I write this that JT passed on last night in St. Louis. In the loving arms of his parents Michael & Heather.

For every baby we know living with HLHS we also know an angel from HLHS.

How appropriate that I was planning this post to share with you the exciting news that our paper wrote about Severin, in hope to get more awareness out there. February 14 is "A Day For Hearts". CHD awareness day. This is also the day the Hall family will celebrate Jonathans life.

Please copy & paste the link provided if you would like to read the story on Severin. We also please ask that you sign the CHD petition to President Bush & pass it on to everyone you know. The link to the petition is on a recent post and the info is at the bottom of the article on Severin. The article will only be posted online until next Tuesday. I also have hardcopies if anybody needs one.

Please keep the Hall family in your thoughts and prayers as this is and has been such an extremely difficult journey and we know the days ahead will be difficult.

www.forestlaketimes.com

From our hearts to yours,

Amy & the rest of the bunch

March 04, 2004 at 02:45 PM CST
The family returned to Forest Lake on October 29, 2002 before going for the second surgery in March of last year.

The goal of the Hemi-Fontan is to lessen the workload for the right ventricle. When completed, the right side of the heart only pumps blood to the body. A lot of kids never make it home. A lot of kids never make it to the second surgery. “We felt so victorious he made it to the Hemi,” Amy said.

Severin still has problems with swallowing and gets his nutrition via a feeding tube. He recently overcame a problem with acid reflux and his parents report he is improving—crawling, getting around by himself and being more cheerful. “He’s a new little guy,” Amy said. “He’s advancing by leaps and bounds now. You can just tell he feels so much better.” This fall, he will attend a feeding program to help him learn to eat traditionally.

Severin will have his third surgery late this spring. The purpose of the Fontan surgery is to bring the blue blood coming back from the body to the lungs. This surgery, the Brennys say, will be the hardest emotionally. It’s heart wrenching for the parents and for him,” Amy said. It’s a hard age and it’s going to be hard on mom and dad, too.”

After the surgery, Severin will be hospitalized for 2-6 weeks. All along, the Brenny’s have been looking to the next surgery. Now, the future is more uncertain. “We don’t know what the future holds. We know we do need more medical advances and research,” Chad said.

Sitting in the living room of their Forest Lake home, Chad and Amy have pride for their children. “They’re very good babies,” she said.

And they are thankful for their families.

“Our parents have helped us so much,” she said. “That’s how we survived the three hour feedings and Severin’s medication given eight times daily when we first came home—the grandmas and the grandpas. We have a lot of help from our family.”

The Brennys chose to share their story because they said awareness of congenital heart defects and organ donation is vital. With more awareness comes more action, with more action, more success.

“Severin is our heart hero. He is such a brave little boy. He has people from all over the U.S. praying and cheering him on via his care page. He has taught us many lessons—one of them that every day is such a gift to be cherished,” the Brennys said.

“Throughout everything we know that while his defect is devastating, we know from watching other families experiences that things could be worse. We have experienced many positive things throughout this journey, like the friendships and bonds made with other families going through the same thing. Our lives have been enriched with wonderful friendships. Our family has truly been blessed with Severin, Carson and Lauren.”

They tell their story to help others who may be in their situation.
“There is hope out there for families that are diagnosed with congenital heart defects,” Amy said. “Be your best advocate or your child’s advocate. Do the research. Ask about success rates. Do what you’re comfortable with.“Being out of state for two months was a long time. We learned that home is where the heart is and that happened to be Ann Arbor for awhile. Now there are times we actually miss Michigan.”

The Brenny’s also hope to raise awareness of the importance of organ donation. Eight people die every day waiting for a transplant. And they have seen the miracle in familes who received the ultimate gift off life for their children from another family’s loss. And they know a family from Tennessee who lost their daughter, Rachel, as time ran out waiting for a heart.

“I remember when we first received the news that “baby b” had a fatal heart defect,” Amy said. “I recall going to renew my driver’s license that summer and the little box you check to be an organ donor truly has so much meaning to my family personally.”

People can make a difference for babies like Severin in day to day decisions.

March 04, 2004 at 02:53 PM CST
They decided to travel to Ann Arbor, Michigan and sought the expertise of Dr. Edward Bove, who is renowned for repairing HLHS.
While the procedures are done with success at Minneapolis Children’s, the Brenny’s decided on C.S. Motts Children’s Hospital at the University of Michigan Medical Center because they do about 60 surgeries a year, compared to about 6 here.Michigan is considered to be one of the top pediatric heart centers in the nation, next to Boston Children’s and Philadelphia. “Michigan was absolutely the best decision we ever made. It’s the whole package, they don’t just take care of your child—but your whole family,” Amy said.
A long road

The boys were born on September 23, 2002 in Michigan at 38 weeks. Severin was 5 lbs. 7 oz., Carson at 6 lbs. 4 oz.

Amy, Chad, their daughter Lauren and mothers, Florence Grunwald and Carol Brenny had arrived in Michigan early, on September 2. Chad and Carol returned to Minnesota after getting them settled in. It was important for Amy to be in Ann Arbor early, due to the risk of premature labor in carrying twins. Chad returned to MI a few days before Amy was to be induced into labor.

As little babies, the boys would spend twin time together in the NICU issolette as Severin awaited his first open heart surgery. Carson in his hospital pajamas and Severin hooked up to monitors and lines.

“I was not able to hold him until he was eight-days-old,” Amy said.
Nine days later, on October 2, little Severin was in surgery. The goal of the Norwood surgery is to rebuild the heart so the right side is the pumping chamber. The right ventricle pumps blood to the lungs and body.

“The first surgery is the most risky, it’s a very difficult surgery to perform. It was so extremely difficult for us,” Amy said.

The family stayed at the Ronald McDonald House, with other families who were praying for their own children. Florence Grunwald stayed for a month as did Chad’s mom, Carol Brenny. The Brennys saw families from South Dakota, Illinois, Tennessee, Texas, Kentucky, Michigan and Malaysia mourn losses and they saw families enjoy triumphs.

“The day of his surgery was just the beginning of the rollercoaster ride. The highs are so high and the lows are so low. Everything can cange in an instant, like when we first saw Severin after surgery and he went into cardiac arrest in front of us. That was the night we thought we were going to lose our son. His amazing nurse, Mindy, saved his life. After her shift ended she even called in the middle of the night to check on him. That is just one of many stories of the amazing staff at “Pod A” that cared for our son.”


March 19, 2004 at 10:31 PM CST
Hello everyone, it is so hard to believe that one year ago today was Severin’s hemi-fontan surgery. I will never forget when Dr. Bove came to talk to us after his operation with a smile on his face, totally opposite from the norwood. I do not know where the time goes, I think sometimes I need a reminder to “stop & smell the roses”. Of course our anxiety is at extreme levels these days as his next surgery quickly approaches.

We have been doing a little spring cleaning in the Brenny house. I had to dust off the baby spoons because SEVERIN IS EATING ORALLY! It is such a blessing. I am not sure if it is Severin that is wrapped around Grandma Carol’s finger or vise vera, but last week she offered him some yogurt and he opened his mouth willingly and has been like a little bird 3x a day ever since. 1-3 ounces each feeding. IT IS A GREAT START! His speech & occupational therapists almost fainted in disbelief! It is so great to see such progress! We hope soon that he will get a little daring and try some liquids via cup/bottle. Severin has also turned into quite the little smoocher, another thrill for mom & dad since previously he has not liked anything near his face/mouth, as long as he does not start chasing girls!

I just wanted to share the news with you all. I know there have been many previous posts of frustration when things were so discouraging with his long 16 months of terrible reflux. We are so thankful to have such great support from all of our family & friends. I hope all is well with you & your families.

*One more quick note as of Saturday a.m., he took a few sips of a bottle contraption I picked up last night! Check out the new pictures to see for yourself!

God is good all of the time.

From our hearts to yours,

Amy & the rest of the bunch

May 19, 2004 at 09:41 AM CDT   (back to top)
Good morning everyone. Well here we go again. We are preparing to leave for Michigan on Saturday. Chad, Severin, my mother Florence & I will drive out. Tuesday Grandpa & Grandma Brenny will drive out with Lauren & Carson. We give thanks for our parents for there never ending love & support.

Monday Severin will have his cardiology work-up. Tuesday he will have his heart cath, & surgery on Wednesday. It is another open- heart surgery where he will go on bypass again. As parents it is hard to even try & describe the anxiety we are feeling. We ask for your prayers for a safe trip to Michigan a successful surgery & speedy recovery. We are planning for this to be a 2-6 week stay depending on recovery.

We will be reunited with a few other heart families upon our return, we have all been through so much together it is wonderful to have each other for support once again. Bo Luff (hlhs) from TN, will have his fontan the same day. Halle Frank (hrhs) from MI, is having feeding issues & will be getting a feeding tube like Severin has next Friday. Also, Faith Forrest (hlhs) from MI will have her heart cath while we are at U of MI the first Friday in June. Please keep these families in your prayers.

All of your support & prayers are so heartfelt, there are no words to describe what it means to us.

From our hearts to yours,

Amy, Chad, Lauren, Carson & Severin

May 23, 2004 at 10:40 PM CDT
Hello everyone,
Just a quick note to let you know that we are safe & sound at the RMH in Ann Arbor. Severin is happy to be out of the car. We saw the Santiago family last night in Chicago. Jordan was born with HLHS & we met them here in the beginning as he was waiting for a transplant for over 15 months. He is doing awesome! It was great to see him running all over after he had been so ill for so long!

Tomorrow (Monday) Severin has a chest x-ray & then an echocardiogram of his heart at 9:00 a.m. He will be sedated for his echo at 10:00. Tuesday his heart cath is at 8:00 a.m. We will post more Monday or Tuesday.

Just to let you know that we have had a bit of a setback with the return of his reflux in the last week. It is pretty bad again & we are unsure as to why it is happening.

Ronald McDonald House/Brenny
1600 Washington Heights
Ann Arbor, MI 48104

From our hearts to yours,
Amy, Chad, & Severin

May 25, 2004 at 06:51 AM CDT
Yesterday Severin had his echo. The cardiologist came in for a look himself. He is concerned with his Tricuspid valve. It has a moderate leak. They like to just have a mild leak. Our pc in MN has been watching this but Severin's function has been really good thus far. I have had a very stressed out 24 hours over this, but today will bring more answers with his heart cath.

Last evening we were invited to our favorite nurse Whitnie's house. She made us such an awesome dinner. She even brought out the good china (her daughters were so excited!). She is so good to us! We are a little disappointed that she is not working the day of or following Severin's surgery. We are planning on being out of "POD A" by the time she works this weekend!

My mother Florence is a little under the weather. She has a nerve problem that flared up in her neck/shoulder. Please keep her in prayer also as she is in great discomfort & feeling very bad that she is down & out while here in MI.

Severin is the first case this morning for his cath. We will update later this afternoon when he is admitted to the floor. We are also anxiously awaiting the arrival of Lauren, Carson, & Grandma & Grandpa Brenny. I hope the long drive with two kids is going well for them. They should arrive in the afternoon.

From our hearts to yours,
Amy, Chad & Severin

May 25, 2004 at 11:37 AM CDT
Right now we are waiting to speak with Dr. Lloyd regarding the findings of Severin's cath. Unfortunately Severin had some airway issues and had to do an emergency intubation. What this means is that he is now on the ventilator. We will now be going up to POD B, or C (POD A is full) which is the pediatric intensive care unit. Severin will not be extubated before surgery. We had hoped that we would be able to take him back to RMH with us tonight and we would get alot of snuggling in before surgery tomorrow. We had not expected this to happen and mom & dad are pretty emotional right now as we cannot hold him before his surgery.

As you all know from his previous surgeries he loves the ventilator and extubating him has always been a challenge, so they will not even attempt this before his surgery. We pray that this will be the only bump in the road & tomorrow will be a better day. I will post later when we find out the results of his cath. Please keep our little heart hero in your prayers.
Amy & Chad

May 26, 2004 at 04:31 AM CDT
Lauren Carson & Grandma & Grandpa are here safe & sound. We had a trip to the ER with Lauren last evening as she brought a friend with to MI. A woodtick. They do not have any lymes disease here so we caused quite the commotion in the hospital. They removed her friend behind her ear, which was quite bloated & they took the precautionary measures for Lymes. Never a dull moment!

As for Severin. We have a change on plans for his surgery today. First Dr. Bove will try & repair his Tricuspid valve which has more than a moderate regurgitaion (leak). If this ends up being more complex he will just focus on this repair for Severin. I suppose if they are not able to improve the leak in the valve, the scenerio will change to Severin needing a heart transplant as he would not be a candidate for the fontan.

If they can repair his valve in minimal time, then he will proceed with the fontan. If the valve takes more time & it is the only thing repaired today then we would come back for his fontan in six months.

Lots of "what if's" going on here & no way to know until they get into surgery. I just wanted to post quick before I sit with Severin this morning before he goes into surgery. He is first case today. He may be the only case today as they are extremely full in the unit here and are not accepting any more patients. The only reason Severin is a go for surgery today is because he was intubated yesterday! Praise GOD! There is a silver lining in every cloud!

We ask for your payers for Severin & Dr. Bove. Things are extremely serious here. Our Faith is strong & we Trust in HIM.

God bless you all,
Amy, Chad & Severin

May 26, 2004 at 10:17 AM CDT
It's all good, they were able to repair the valve and do the Fontan. Will post more later.

May 27, 2004 at 07:12 AM CDT
Good morning everyone. I am sorry I did not get a chance to post more yesterday, just did not want to leave you hanging with all of the "what ifs" that we had the past couple of days. I have already seen Severin this a.m. & he is resting & has been pretty stable. He has the "post pump fever", his extremities are a little chilly. They will give him some fluids to help him with being a little "dry" (vascularly)this will make him a little more puffy/swollen. He has been breathing above his ventilator settings (which is great!).

This morning when they came through on "rounds" the plan for him today is to due a couple trial "sprints" (this is like a trial run to see if he is ready to be extubated, breathing/not needing the ventilator). If all goes well they will go ahead & extubate. Severin has never been extubated easily. Given the airway problems in the Cath lab & his prior extubation history we all want him at optimum before they do this.

We spoke with Dr. Bove yesterday afternoon & it was great to have him smiling when he was giving us the report on how the surgery went. He went ahead & started of with preforming the fontan. After that he repaired the tricuspid valve, which was successful. Severin's tricuspid valve is very deformed, it is very "thick & chunky" as Dr. Bove informed us. It most likely will be an issue again, but for now it will grow as he does & Dr. Bove thinks it will not be any trouble in the near future.

I do not even know what to say about the heartfelt prayers & overwhelming support we have received. The messages, care packages, posts on Severin's care page & the fact that we feel the power of all your prayers lift our family up. Keep it up...Severin still has a long recovery ahead. With all that said, I give thank to the Lord for giving us Severin. In the bed next to Severin is a 14 year old boy Michael Czapek, he was 100% heart healthy when he got the flu & a virus attacked his heart. What a fluke! His mom Kitty, lost her husband 11 years ago. He is on a mechanical heart machine, ventilator & Kidney dialysis. He needs to be off the ventilator & his kidneys functioning before he can be listed for a heart transplant. Please lift up Kitty & Michael in your prayers. He also has two nurses taking care of him....that should give you an idea how critical he is.

We will keep you updated.....no news is good news! God's peace & blessings to you all.

From our hearts to yours,
Amy, Chad & Severin

May 27, 2004 at 01:43 PM CDT
Hi friends and family,

It's Jennifer Dillard posting this time--Amy called and asked me to post a quick update. Severin is not having a good day, and neither is his Mommy and Daddy. Severin's vitals are out-of-wack, so to speak. His heart rate is high today--in the 190s, and his blood pressure is low. Currently his temperature is about 105 degrees. No one knows what that means just yet. They're ordered an ECHO to check his heart function, to rule that out. He's just not feeling well today--she said he's pretty "out of it," for Severin.

I know Amy would really appreciate prayers today for sweet Severin. It is so comforting to know others are praying for your child, especially when there are so many unknowns. Not knowing WHY his body is reacting this way is frightening. I THINK IT WOULD BE GREAT IF WE COULD ALL SAY A PRAYER TOGETHER FOR HIM TONIGHT AT 9 PM EASTERN/8 PM CENTRAL. The power of prayer is an amazing thing, and so comforting to know that others around the country are praying for Severin at the same time.

I know Amy will post an update tonight, one way or the other to let us know how Severin’s doing. I just don’t think they know what’s going on or how serious it is, just yet.

God Bless,
Jennifer Dillard


May 27, 2004 at 03:20 PM CDT
Amy just called--She and Chad did not receive good news from the ECHO. Evidently the Fontan is not working for Severin. His heart is functioning only "moderately" and his pressures aren't good. They cannot get his blood pressure up, so his extremities are cold, due to poor blood flow.

Amy said they are "taking down the Fontan." I'm at a loss--I've never heard of this scenerio. I presume they will return his blood flow pattern to the previous stage repair, which Severin did well with. Dr Bove and Dr. Ohye are out of town, so their partner Dr. Devaney will be doing the surgery this afternoon.

Amy and Chad have a very high level of anxiety right now, as you can imagine. I know she would much prefer Dr Bove to be the one performing the surgery, but Dr Devaney is an excellent surgeon, and Dr Bove wouldn't have selected him to do his fellowship and become an attending under him if that weren't the case.

For those of you who remember him--Cyrus, a fellow we got to know well, is still there and taking great care of Severin, Amy, and Chad (even though he completes his fellowship in June and is no longer doing PICU rotations). She said he was on his way down "to put me back together." :-) I'm sure he'll be a great help in understanding more about Severin's situation.

Remember to pray at 9pm/8 central!!!!!!!

God Bless you all,
Jennifer Dillard

May 27, 2004 at 07:37 PM CDT
Severin has not gone to surgery to "take down" his Fontan. Dr. Devaney wanted to try another option before surgery. They decided to open-up his chest in the unit, hoping that this will relieve some of the pressure and his heart will be able to relax more & pump better. They opened his chest at 4:30 and it took about 1 hour. There they were able to remove alot of fluid around his heart. They also started him on across the board antibiotics, IV Lasix and he is now on nitrous oxide to help his lungs. His numbers have improved. Right now it is shift change so we cannot be with him. What he needs right now is your PRAYERS, a very quiet night, and to pee off alot of the fluids they have been giving him for support. His medication support is at the maximum, (HE IS ON A LOT OF SUPPORT). If his numbers do not stay the same (we still need them to imoprove). Then he will be going to surgery where they will take down the fontan. Life with these hearts babies is minute to minute. All is calm right now.....we pray for a boring night.
We love all of you....
from our hearts to yours,
Brenny bunch
May 28, 2004 at 02:45 AM CDT
Just checked on my sweet little boy. Still one very sick little cookie, but no changes/this is positive, he does need to pee more. He has not woke up in over 24 hours, liver might be holding onto his sedation from the procedure yesterday. I will let you know the plans for today after they round later in the a.m.
Amy

May 28, 2004 at 08:00 AM CDT
During rounds this a.m. they have decided that the Nitrus is not doing anything for him (he does not need it/good). They went up on his epinephrine & give him some sodium bicarb to up his blood pressure & some more bolus fluids. He is doing a little better with the blood pressure being at a higher level. His glucose level is very high so now they may give him insulin. It is just wait & see today & tweaking things, to see if they can improve things. He did open his eyes for a second, but it was to check out his nurse. Mom & dad were not there yet. We appreciate all of your prayers & messages....keep them coming...this will be a long road!
Gods peace & blessings to you all!
Love, Amy & Chad & Severin

May 28, 2004 at 05:26 PM CDT
It's Jennifer again. . I'm going to try to do my best at getting everything Amy said correct, but Brad spoke to her and then relayed it to me. .

Severin is doing a little better, overall. The problem is that today they found that he does indeed have a bacterial infection in his bloodstream. They are treating it, but the culture has not had time to grow out so they don't know exactly which bacteria it is or how best to treat it.

His blood pressure is better and his heart rate is down, which is good. It's not quite down to his normal rate yet. His SATs are 90+ which is also good news. He is not moving enough fluid yet, so I know they're doing the "pee" dance and watching every drop fall into the foley bag.

She also said he's moving his extremities and his pupils are reactive-all good news.

Overall, they're going to try to get the infection under control and hope for more urine output. At this point they can't tell if it's the infection or the Fontan that's causing his problems.

(Hope this sounds okay Amy!)

Thank you for the prayers last night--PLEASE keep them coming for Severin.

May 29, 2004 at 08:34 AM CDT
Good Morning, Severin continues to be a very sick little boy. I cannot thank Jennifer Dillard enough for the great job she is doing doing posts for our Severin. She has first hand experience of the rollercoaster ride, as we met this great mom of her own HLHS baby Benjamin out here in the beginning. I asked her before we came out to MI if she would help us with postings if needed. GOD had been helping me prepare for a hard road this trip.

Severin is still not peeing off all the fluids he is receiving. He is up about 2 kilograms in weight (this almost 4lbs in fuid). His fever is back & he continues to be quite lethargic. He will be receiving more fresh frozen plasma & platletes this morning. His Nitric Oxide was slowly weaned off this past 24 hours. Our FAITH is strong, we take great comfort in knowing that GOD is with us throughout this journey & we draw strength from your prayers & well wishes. It is just a wait & see here & we will keep you informed & up up date as possible.

Bo Luff (our HLHS buddy from TN) has been doing AWESOME, he is going to "THE FLOOR" today from "MODERATE CARE". Prayers for Michael today for a successful extubation off the ventilator. He needs to be off the vent & dialysis before he can get listed for a heart transplant. We love the messages on the care page, they are a tremendous "lift" for us.

Lauren & Carson are pretty "out of sorts" here as we realize they would be better in there "home" environment. We have had maybe about 10-15 minutes a day with them & then we run off to the PICU. The Grandparents are doing a super job with them. They will be heading back to MN on Tuesday.

Our time is very limited outside of the PICU. Messages left for us will probably not be returned. I will post the RMH info again for those who have might have missed that info.

Ronald McDonald House/Brenny Family
1600 Washington Heights
Ann Arbor, MI 48104

#734-994-4442

God Bless,

Amy, Chad & Severin

May 30, 2004 at 07:02 PM CDT
Good evening. Not much news to post. He is still not peeing enough so they are going to start dialysis. He is up over 8 lbs of fluid (his "DRY" weight was 20 lbs before surgery & now he is weighing in at over 28lbs). They need to help him by pulling this fluid off for him. Hopefully this will make him more comfortable and allow for his functions to improve. They also identified one of his bacterial infections as ENTEROBACTER, a nasty one. They immediately started him on Zosyn yesterday (a big gun antiobiotic). Thats all we really have for now. We will wait & see how he responds to the dialysis the next 5 days or so.
God Bless.

Brenny Bunch


June 01, 2004 at 08:58 AM CDT
Morning,

Well not much to post. He is down from approx 12.8 kilos (about 28lbs) to about 11.4 kilos. So the dialysis is helping. Hopefully in the next couple of days his kidneys will kick back into shape. They have slowly weened down some of his meds. He seems to tolerate it well. He is going in the right direction. We measure his progress in millimeters. He has a very long road ahead of him. He is our little hero. We appreciate all of your prayers it gives us all strength, its heartwarming to know he is so loved. Keep the prayers coming, as you know he needs them all. We will update again soon.

God Bless,
The Brenny Bunch


June 02, 2004 at 10:55 PM CDT
Today's progress report: Severin has been weaned off the Nitric Oxide today....so far so good! They have pulled about 1 liter of fluid off today. I do not have the weigh in for the day yet. His platlets still are an issue and has been getting platlets replaced a couple of times per day...this has been due to the infection. His kidneys have not kicked in yet and are still needing time to recover. His liver is looking improved. His heart rythym showed a flutter and that he was a little "tacky". They hooked up the pacer and got his sinus rythym back on track this morning, we definately saw his numbers improve from this.

It was pretty rough for mom & dad today when Severin was crying on the ventilator and we were unable to settle him down. The last week he has been so ill & out of it....they are down on his morphine and he is awake a little more & pretty scared!

Today was definately a good day...he still has a long way to go! His chest is still open, glucose levels are still at issue along with the kidneys, and the heart function needing to improve. Then they will wean him off the ventilator after that. We love reading all of your posts! The Grandparents & kids are still in town here.

God bless,

Amy, Chad, Lauren, Carson & Severin

June 03, 2004 at 07:50 AM CDT

Pray for strength for Severin's mommy....I called to back to see him & the nurse would not let us come back because they were "rounding" on him (all the Dr.'s talking about him & the plan for today). It is my right as a parent to be back there! I will update later.....I will be requesting a new nurse.....imagine that!

June 03, 2004 at 10:14 PM CDT
Thursdays are not Severin’s best day out of the week. I guess out of the entire previous week, the best day for Severin was Wednesday, when his surgery went well for him. The days leading to his surgery where extremely stressful with the Tricuspid valve issues & the emergency intubation during his heart cath. Then we had last Thursday when everything went down hill so fast.

Today of course started out with new worries & anxiety regarding Severin. His night nurse Whitnie was concerned with his labored breathing. All the numbers look good, blood pressure, oxygen saturations, heart rate etc. That raises the concerns of it being a neurological issue. This was another reason I was extremely upset when I could not get back into the unit for “ROUNDS”. Severin had a CT scan today. It took several hours before we heard any preliminary results. It was NEGATIVE!!!!!! Praise the LORD!

We still do not have answers for why he is breathing so labored when from a respiratory standpoint things look relatively good. His lungs are pretty gunky but they need his chest closed before they can pound on him to loosen things up. Another possibility could be the liver still holding onto medications/sedations longer since he has been extremely ill with this bacterial infection. As the fluids are still coming off Severin we see the left side of his rib cage looking like it is inverted. Things looked good when the nurse did the dressing change of his open chest. We pray for Friday to bring more answers & positive results for our little hero. No kidney function as of yet.

Tonight Dr. Bove came by. He gave me a hug and we talked for a while about Severin. I cannot say enough about what a remarkable person he is. He is very optimistic about the kidney function returning, and that the neurological concerns would have presented on the CT scan since the sepsis was evident last Thursday. Thank you all for the continued prayers & messages……it is great for the spirits!

From our hearts to yours,

Amy, Chad, Lauren, Carson & Severin

June 06, 2004 at 08:40 AM CDT
Sorry about the lapse in updates. The kids and Grandparents are back in MN as of 5:00a.m. We are so thankful for a safe trip home for them.

Severin had another CT scan yesterday as his nurse noticed a few episodes where his arms would tighten up and his breathing changed etc. They also had done an EEG on Friday. We are still unsure of the results as it is the weekend and hard to catch Neuro when they come by to check on Severin. I know at somepoint when he is stable they will do a MRI on him to get a better picture of what may be the cause of these episodes. They did start him on a seizure medication as a precautionary measure.

That is all for now...they have not had "ROUNDS" yet this a.m. as the unit has been closed.

We thank you again for the continued prayers & messages. We wish this were all just a bad dream and we would wake up and have out little boy smiling, and doing his shake-a-shake-a-shake-a for us! Please know that our FAITH is strong and HE will see us through this storm.

Just another quick note to ask for prayers for William, Severin's roomate was just moved to POD C and put on ECMO. He has Tetrollogy of Fallot and will turn ONE on June 10. Also Halle is back at Mott for observation with her oxygen saturations dropping very low.

GOD IS GOOD, ALL THE TIME,

From our hearts to yours,
Amy, Chad & Severin

June 07, 2004 at 07:24 PM CDT
Accentuate (sp?) the positives. #1 EEG results...no seizure activity. They did even catch one of Severin's episodes while doing the EEG, when his blood pressure went up to the 150-160's. This is good that it is not seizure activity. #2 Platlet count is up, into the 70's as I recall from this morning, this is good, he has not received any platets in about 48 hours. #3 They are going to sprint him tonight to see how ready he is to be extubated.

Kidney function is not ready to be put to the test yet. They still do not have any explanations to his episodes where his BP is high, other than hypertension, his pupils fix, arms tense & breathing is different other than maybe he needs to come off the vent & could still be holding onto the sedation. We have had a meeting with Neuro and there are concerns regarding the "watershed" part of his brain that sustained some injury due to his first day post-op when his blood pressure was so low. He was not getting enough perfusion to the brain. What this means....we still do not know. It could mean some intense physical therapy for his lower extremities. It could mean that he is totally fine. We will not have answers until he has recovered more.

We are trying not to jump to conclusions as of yet, and are refraining from the "what if", we have the "wait & see" attitude.

We will let you know tomorrow how his sprint went! Take care, God's peace & blessings to you all!

from our hearts to yours,

Amy, Chad, & Severin
June 09, 2004 at 10:58 AM CDT
No big plans for today. They were thinking they might extubate, but his sprints have not been the best. They will probably do another sprint today, then sprint him tomorrow to see if he is ready. He is still up a kilo (2.2 pounds) from his "dry" weight with fluid, so they are switching his dialysis solution to try & get some more fluid off.

In another day or two they will take him for another CT scan. I have great concern since he is not very alert. He has not had any sedation in a few days and should be more responsive than he is. That is all I have for now. Please keep Severin in your prayers as he has such a long road ahead of him.

Thanks for the posts!!! We appreciate all of your support!

From our hearts to yours,

Amy, Chad & Severin

June 10, 2004 at 05:31 PM CDT
Hi all. Well they did not extubate Severin today. His blood gas after his last sprint was not good. He started to struggle so tomorrow is another day. Other than that he has had a quiet day (FOR A THURSDAY!). Still trying to get more fluid off.

On another note....I wanted to ask for some more prayers for someone very special to Severin & I. Mary is Severin's Occupational Therapist back home. She delivered her baby boy today at 31 weeks 3lbs 12 oz. Please keep mom, dad & baby in your prayers. I have no other details on how they are doing as of yet. Mary is so special to us & I have no words to describe the special bond she has with Severin. She is the one who taught him the SHAKE-A, SHAKE-A, SHAKE-A! She has an incredible gift working with kids & we will miss her terribly as she is starting her new career as a mom!

Our former roomate in POD A, William celebrated his 1st birthday today. He has a big surgery tomorrow so please pray for a great success! He is still in POD C on ECMO.

Gods Peace & Blessings to you,

From our hearts to yours,

Amy, Chad & Severin
 
June 11, 2004 at 09:49 AM CDT
The plan for Severin today is to get him set up for a 24 hour EEG to check once again for seizure activity. His sprints have not been going well at all & they think that it is something related to the Neuro issues that are holding him up with the breathing. They also are thinking of pulling his pacer wires so they can get him down for an MRI. The metal on the pacer wires are keeping him from the MRI & they feel they can pull them since his heart rhythm has been stable & they have only needed to pace him last week to get him back into sinus rhythm. The plan for today was/is? to challenge his kidneys today to see if they will kick back into action.

It is another tough day on mom & dad....to think it was just three weeks ago we had our little guy getting ready for the trip to MI and he was swimming in the pool with the Santiago family, visiting for dinner at his nurse Whitnie's house. Not having answers to the Neuro issues is so frightening. Prayers for our heart hero to pull through this.

Love from our hearts to yours,

Amy, Chad & Severin

June 13, 2004 at 10:13 PM CDT
This morning I was feeling alot like the weather cloudy and grey.

One of our main concerns with the "watershed insult" that Severin has sustained is the reality that he may not ever walk. It is hard to forsee what his recovery will/may be from this as of yet. We have been at a standstill with the neuro issues and as of yet we have no answers. The one thing we do know from his 48 hour EEG is that he has no seizure activity.

I went over this morning to see Severin & there was Rita...a very favorite nurse of Severin & ours. She had been gone all last week to "vent camp" where she was volunteering a whole week so that kids that are wheelchair bound & on ventilators can have the true summer camp experience. Rita is an amazing nurse 25 years old & single, just says a little of how much she cares for kids. The night she got home she called in to check on Severin. She picked up the shift today to come in & take care of Severin.

Rita flushed his foley catheter (this is his urine cath) immediately 30cc of urine came out.....THE DAM BROKE!!! What this means...his kidneys are functioning! He has had over 4 ounces of urine today! There was a lot of sediment in the catheter....she immediately changed his foley and the river is flowing! Thank God for Rita. She also was his nurse the first day post-op when things went downhill fast...she was the one who suggested they culture Severin when she came in that a.m. & they were thinking his temp was "post pump fever".

Although things are still very uncertain with Severin coming off the ventilator and the Neuro issues at hand....we did have a little positive today with the kidney function coming back....we are still "guarded" with our optimism as he will still be on dialysis for a few more days to come. On days like today it is great to read all of your messages & we rejoice in all of the support you all provide for our family!

***We still need for our buddy Michael's kidney's to kick in so he can be listed for a heart transplant!!!!

Gods peace & blessings to you all!

From our hearts to yours,
Amy, Chad & Lauren

June 15, 2004 at 07:28 AM CDT
Good morning. Just came from "rounds" no big plans for today...the focus is still to get Severin off dialysis. Slowly they are weaning him off this & in doing so he is peeing more. Yesterday they fit him for splints for his feet to help prevent "foot drop".

He has had a a good night & yesterday was a good day. Still trying to get him back to his "dry weight". Slowly but surely.

Update on Lauren & Carson. They are doing well with Grandma & Grandpa. They went to the cabin last weekend & have now spent a couple of days at our home. The plan is to have them come out at the end of June for a visit. There is a heart reunion here in MI that we had planned on attending. We had anticipated that this would have been a visit back to MI. Severin will not be in attendance but it will be fun for his brother & sister to go. We are looking forward to seeing our family along with our heart families that will be coming for this. I am very excited to see the Dillard's (Benjamin) as I have not seen this family since we were here since 2002.

My great friend Melody is starting her shift with Lauren & Carson back in MN. Aunte Mel had come to MI for Severin's 2nd surgery to help with the kids. What a wonderful friend to help us!

We love you all & thanks for the great posts!

From our hearts to yours,

Amy, Chad & Severin

June 16, 2004 at 11:58 AM CDT
All is another quiet day here.....they have stopped the dialysis...need some more pee dancing as his output is a little slower. We got to hold our little boy yesterday!!!!! It had been 21 days too long. He tolerated it very well! I will have Chad post the pictures later. Somehow the update message for yesterday's post did not go through. God Bless!

From our hearts to yours,

Amy, Chad & Severin

June 16, 2004 at 06:56 PM CDT
Well the last day or so has been quiet and therefore good. Yesterday afternoon we got to hold Severin for the first time in over 21 days. Amy held him for about 45 minuets and myself 15 minutes. What a feeling that was. You just do not want to let go. (Picture attached). He is still peeing; we of course want/need more pee. Today they discontinued his dialysis. We suspect that the dialysis will be back since he is starting already to puff up (retain fluid). The good news is that he is still peeing. His liver is still very congested with all the medications, that just needs time. Everyone is very happy with how far he has come. He is a very strong willed little boy, we thank God for that. They also have started to sprint him again, their plan is to do that for several days before they think about the next step. He is improving, as you can see, yet we know he still has a very long road to travel before getting back to where he was hours after surgery.

We thank you again for all of your support and prayers; we canýt imagine going through this with out all of you. We havenýt even thought about when we will all be back together at home, in Minnesota, we know it will be some time before we can think about that. It sounds like the Grandparents, Lauren and Carson will be returning to Michigan sometime late next week. We are looking forward to having all of us in one room again even for a short period of time.

Other notes: They are talking about starting physical therapy, he is on a continuous feeding (diaper changes are back, and they are quite the ordeal). Chest tube drainage has not slowed.

We will keep everyone posted when we can. Words cannot say enough about what it means to have all of your support.

God is good always.


Chad, Amy, Lauren, Carson and Severin

June 16, 2004 at 11:10 PM CDT
Here we go again....tonight Severin had a little episode with his blood pressure dropping. His two pressure support sprints were not the best today. I am assuming we have a very good chance of starting up the dialysis again tomorrow. He is getting very puffy again & I am sure his weight has increased dramatically throughout the day.

I wanted to let you know about a couple of other families we have met here. Ramond Winter from NC had his Fontan today. He also was having serious issues with his blood pressure tonight following surgery. They opened his chest back up (same as they had done with Severin) his blood pressure has improved. I have just left them in the waiting room. I am relieved that they acted quickly to open his chest up to relieve the pressure.

Jordan Lambert, Kansas is HLHS and is 5 yrs old. He has had all of the three stage repair but has had PLE, RSV & has been here four months. He will have surgery next week to "take down" his Fontan. THIS FAMILIES HOME WAS A COMPLETE LOSS TO A TORNADO LAST WEEK!

We feel the power of your prayers for Severin & ask that you add our heart buddies Michael, William, Raymond & Jordan to your list.

God is good, all the time.

From our hearts to yours,

Amy, Chad & Severin

June 17, 2004 at 12:35 PM CDT
The plan for the day. Severin needs to pee. They will decide this afternoon whether or not his output has improved, if not I think the dialysis will be reinstated. He will not sprint today on the ventilator. Tomorrow & the weekend will be the deciding factor with his sprinting....they have started to mention the Tracheostomy word to us if the sprints do not look any better.

He is scheduled for his MRI today at 5:00p.m. They pulled his pacer wires this morning & then called to schedule. Can you believe that MRI did not believe them when they told them his pacer wires were pulled??? They wanted proof & made them get a chest x-ray...can you say WASTE OF MONEY!!

Chad will be heading back to MN tonight. He has a job interview tomorrow. He will be back in Ann Arbor Monday morning. We sure will miss him here. We pray for a few quiet days for Severin while he is gone.

I know Lauren & Carson will be so excited to see daddy! We miss them terribly.

Today is another day of new worries with Severin. We will probably not have any preliminary report on the MRI until tomorrow since it will be done this evening. The final read on the MRI will probably not be until Monday since we are vastly approaching the weekend.

I have no news on our buddy Raymond & how his night went yet...it has been a crazy a.m. waiting for the MRI to be scheduled & trying to get Chad his ticket booked. Have a great day!

Thanks for all of you love & support!

God is good, all of the time.

From our hearts to yours,

Amy, Chad & Severin

June 19, 2004 at 12:31 PM CDT
Friday was a crazy day. In the morning they moved Severin to bed 11. This was suprisingly our first move....by the afternoon we moved again to bed 6. It was due to staffing issues so they had to move him around because of that. It was hard to move to bed 11, the night before we lost a little heart buddy in that bed, Blake Miller HLHS, who was just over a month old. Please keep Angie & Chad Miller in your prayers through this difficult time.

Raymond Winter had surgery this a.m. to "take down" his Fontan. Michael will be trialed off the dialysis for the next 24 hours....please huge pee dancing & prayers for his kidneys to kick in so he can move forward to get listed for a heart transplant.

Severin needs to sprint well today. I have even thought of putting his sneakers on to see if it would help when he sprints. If he does not have good blood gasses after he sprints he will get a tracheostomy. THIS WEEKEND IS HIS LAST CHANCE!

I spoke with Neuro yesterday & have no answers to what the future will bring. It will be a long road of rehab when he comes home & wait & see for a few months.

From our hearts to yours,

Amy & Severin

June 20, 2004 at 03:14 PM CDT
HAPPY FATHER'S DAY!

Forgot to mention two big things that happened on Friday. They did REMOVE Severin's dialysis catheter! Yeah!! I was able to hold Severin again on Friday, he did great with that rocking session, no increase in his blood pressure or anything....he was extremely comfortable!

Saturday was a very good day. His three pressure support sprints all were GOOD! (could not ask for a better Father's Day than that!) He did end up receiving platelets that day, they cut back on his sodium in his drips which brought his sodium to the right level. One of my "heart family" mom's Amy Frank & Halle came to town to visit. She picked strawberries & left off stawberry shortcake for the whole RMH house. What a great treat both were! The company & dessert!

So far his first two sprints today have gone well, one more to go! We will see what the attending cardiologist says tomorrow during rounds. Extra prayers for a little 11 year old boy today that is having serious issues in the unit. I do not know his name but I did speak to his mom Caroline recently (he is also a twin), they used to live in MN & this is his 3rd heart transplant.

Gods Peace & Blessings to you,

From our hearts to yours,

Amy & Severin

June 22, 2004 at 08:04 AM CDT
Yesterday Chad, Lauren, Carson & Grandma Carol had a safe return to MI. It is great to be together! Severin continued to sprint well for two hours at a time yesterday. The plan for today is to sprint & possibly try & extubate tomorrow. It has been 28 days that he has been intubated, so I am nervous. Given that his past track record coming off the ventilator has always been difficult & this time he has had so many more complications.

Sunday I had a visit from another heart mom Jennifer Forrest (Faith's mom). She came after work (an hour away)& waited for me for 2 hours before we connected. She stayed with Severin & I until 2:00 a.m. & then stayed over at RMH. I cannot say enough about what it means to have such great support from all of our family, heart family & friends!

We were asked by the staff at RMH here if we would do a radio interview on staying at RMH. There public relations firm wants to interview a family staying here at "the house" now. Well now it has turned into a TV interview here locally. It is supposed to be Wednesday, but I am pushing for it to be on Friday since many of our heart families will be in town. I could not think of a better way to show the public how staying here at the RMH has made such a difference in such a stressful time in our life. The staff, volunteers & other families we have met staying here are unbelievable. I just wanted to give "fair warning" to any of our heart families coming into town Friday that I really am hoping to include you in this public realtions opportuntiy for RMH. There is no way to describe what all the lifelong friendships we have made through here mean to us & the support that we continue to receive from all of you. No where else could we meet such amazing & wonderful families that we all have so much in common with & share so many triumphs & sorrows.

From our hearts to yours,

Amy, Chad, Lauren, Carson & Severin

June 22, 2004 at 08:36 PM CDT
The news as of late is that they had to stop sprinting Severin. He has another infection. The longer you are in an ICU with lines in (PICC LINNE, ARTERIAL LINE, INTUBATED ETC.)the more you are at risk to get another bug. He has received more platelets today. When the infection is gone we will start over with the sprints.

Also, the TV station has decided to drop the RMH story, so you are off the hook along with us!

Below I have posted a link to any of you who want to learn more about HLHS. This is the link to the main page for Cincinnati Children's, mid way down on the right, you can click for a flash video which demonstrates the heart. It is the best way to understand how a normal heart & Severin's heart works. Click here to read the article.

God is good, all of the time.

From our hearts to yours,

Amy, Chad, Lauren, Carson & Severin

June 25, 2004 at 02:05 PM CDT
These past couple of days have been tough. Severin's cultures have all grown and it is Enterobactor again. This is a very serious infection as before, only now he is not responding to the Zosyn so they are trying another antibiotic that it is sensitive to. His sputum, arterial line & blood have all came back positive. He has had several days where he has been either hypertensive & hypotensive (high & low blood pressure). They are taking him for a CT scan this afternoon to check his abdomen & chest to see if this infection could be walled off somewhere possibly in his stomach or chest which neither is a good thing. It could be a long road to fight this infection. I believe I said before that this could be a fatal infection to even a heart healthy child.

He has been receiving a lot of fluids and is very intravascularly "dry". He also has had terrible "breakdown" on his bum. He has no skin left on his bum & they have stopped his feeds & are trying to get a little relief. It is so raw on his bum it breaks you into tears. Of course this is the least of his problems but it is something that should not have gotten to this point. He had a nurse the other day using a cleanser on him that specified not to use on skin if there is breakdown.

We have a lot of our "heart family" coming into town today & tomorrow for a heart reunion. How bittersweet it is to see them. We are so thankful for there love & support, yet sad since Severin will not be joining all of his other heart buddies.

Please continue to lift Severin in prayer. He is so very ill. Take care & God bless.

From our hearts to yours,

Amy, Chad, Lauren, Carson & Severin

June 27, 2004 at 07:38 PM CDT
Yesterday Severin had a really rough day. He was retaining a lot of fluid, having serious blood pressure issues & working very hard to breath. They were getting ready to pull fluid from his left side & if that was not successful they would have to put a fourth chest tube in his chest for drainage. We had two of our favorite nurses taking care of him yesterday,one who stripped his chest tubes(milking his chest tubes to get things draining) & got a big clot to move through....immediately 600cc drained!!! Things are looking better from some aspects today, but he is fighting a big battle with his Enterobacter & Gram rod positive staph infection. Today he is still needing extra fluid support for his blood pressure & he is back on insulin.

We were thrilled to see some of our "heart family" this weekend. Severin was very ill & time was limited. Our great friends understood & gave us great support just like the "old days" when we were all together for the Norwood. It was a very emotional day to be at the reunion w/o Severin & we were of course missing several of our friends Ella, Logan, Connor, JT, Rachel, Blake and their parents. We love you all and there is never a moment that you are not in our hearts & prayers.

Please pray for our former roomate Mary Schwartz & her parents. She is a very ill little baby who had her Hemi-fontan several weeks ago. She is now being put on ECMO. The unit is closed right now for Mary.

We appreciate all of your ongoing love & support!

Gods Peace & Blessings to you all,

From our hearts to yours,

Amy, Chad & Severin

***Mary passed away, please continue to hold Mike & Joanne & family in your hearts & prayers.

June 29, 2004 at 03:12 PM CDT
On Monday Severin finally got a little tummy time (prone position). It provided some needed relief to his bum. It is not an easy task to do, there is risk of extubation while on the ventilator. My persistence finally paid off & now he is getting his tummy time. It has helped his lungs tremendously & his 02 sats were reading in the 90's last evening. They also finally wrote for the Sylvadine creme I had been requesting for over a week. The bum is starting to look a little better but is far from being healed. (we are so thankful to his/our super nurse for getting these executed)

This morning he looked pretty good. When they rounded they had decided that it was time for another Echocardiogram of his heart & to switch out his lines that are continously growing when cultured. They were hoping to be able to get a couple peripheal IV lines started & a new arterial line since his arterial & picc lines are from May 25. They were not successful in a new arterial line & rewired the existing one. The picc line they will hopefully replace later in the week in the cath lab. They want another look at his pressures & function so he will be going for a heart catheterization later this week. It is an ongoing stressful time since he is not moving forward & seems to be a mystery boy to them. Since they pulled his old picc line & peripheal IV this morning he is looking very pale & puffy, very septic again, which is attributed to pulling the lines that are infected.

We just came from saying goodbye to Dr. Cyrus Samai. He was the first Cardiology fellow who took care of Severin from his first surgery. He has been great to us since we started out here at U of MI. He has not taken care of Severin during our stay here this time, but has kept close tabs on Severin & "put me back together" several times since May. It was very hard to say goodbye to such a great person. It had been our "plan" to have left before Cyrus.

July brings the "new" cardiology fellows on the unit. Not looking forward to the first week/month when that change comes. We are thankful that Severin has such great nurses looking out for him!

Thank you all for the great posts! Gods Peace to you all.

From our hearts to yours,
Amy, Chad & Severin

June 29, 2004 at 07:07 PM CDT
Hi everyone. This is Wendy, Amy's sister. I'm on the phone right now with Amy and she wanted me to post a message for her. Amy wants us all to please pray for William (parents are Jamie & Scott from Missippi). William isn't doing well and his family was told he would not make it through the night. Scott is flying back to the hospital now and let's all pray for a safe journey for him as well. Our hearts and thoughts are with you all...


June 29, 2004 at 10:14 PM CDT
New post. . new author!
It's Jennifer Dillard this time. Chad & Amy have had a terrifying night tonight. First let me say Severin is stable right now, but he had the unit jumping earlier tonight.

Amy had run over to the Ronald McDonald House earlier to get tissues for Jamie, William's Mom. She was rightfully hysterical and Amy, always trying to do for others, wanted to get Jamie some decent kleenex for the long night ahead. When she arrived in the unit a few minutes later, Chad told her that Severin had been extubated! Evidently the nurse was trying to change Severin's head position while he was in the prone position (on his tummy) and his neck was so stiff it caused the ventilator tube to come right out! The loss of oxygen support was such a shock to his system that he quickly spiraled and needed chest compressions and they had to shock him. His heart rythmn was abnormal but he is stable now and his heart is back in sinus rythmn. They gave him blood, which they had planned on doing later anyway, but became a necessity. His potassium is now higher than they'd like.

They said his echo is okay, but they will be going to the cath lab this week. He's had a rough few hours.

As for William, he has improved a bit and they are now giving him a 50/50% chance to get through the night--prayers are working!

I hope to not have any more exciting news tonight and Severin and William have an uneventful evening.

God Bless,
Jennifer

June 30, 2004 at 09:26 PM CDT
Tonight I am posting about our heart buddy William. I ask for your prayers for Scott, Jamie & William & please ask for you to each post a message or prayer for them. If there is any special verse or thing that has helped you through a difficult time, please share this with them. I am at a loss & know that through all our difficult times we have always have all of you to "lift us up". We pray for courage & strength for them & for William to be healed. They had not used a carepage so if you post them on Severin's I would love to share with them.

All is fine with Severin. No plans just yet for the heart cath.

God is good, all the time.

From our hearts to yours,

Amy

July 01, 2004 at 03:57 PM CDT
Dad & mom are sitting here in the cath lab. This afternoon just before shift change the attending cardiologist came & mentioned they were going to do the cath today since the schedule permitted. We had a couple of minutes warning & maybe that is for the best. We are sitting here waiting for the first update. This is a diagnostic heart catheterization & they will be putting in a new PICC line for access. Severin had a restful night & day. It would be nice if this would become a pattern for Severin. I will update later when we know more.

I wanted to ask you to continue to lift Jamie & Scott in prayer as William has passed on this afternoon. He is an amazing little boy who was so brave & strong through this journey. I have no words & just cannot imagine their tremendous grief. I know William is now at Peace and his heart is healed. I will be sending them all of your wonderful messages.

There has been so much loss here in POD A, B & C in the last few weeks. Our hearts are heavy as we are all filled with grief. Please continue to pray for the families of Blake, William, Mary, Brandon, Luciano & the five other children (sorry I do not know all of their names)who have passed away here in the last few weeks.

One of our HLHS friends Nicholas Hale had his Fontan yesterday. He is doing GREAT & is already on the floor. Nathan Wells-HLHS will have surgery tomorrow to repair his Tricuspid valve. We met this wonderful family when we were here for the Norwood. I do want to let you know that although there has been a tremendous amount of sorrow here with many, there are kids that do great.

***We just got an update from the nurse & Severin is snoozing & very comfortable. We will let you know later what the results are.

Please continue to pray for Severin, Michael, Raymond jr., Nicholas, Nathan, and all of our other heart friends.

Lauren & Carson have been home since Monday & Aunte Melody has been staying with them. Tomorrow they head to the cabin with Grandpa & Grandma Brenny.

Gods Peace & Blessings to you.

God is good, all the time.

From our hearts to yours,

Chad, Amy & Severin

July 01, 2004 at 06:51 PM CDT
Just a quick post to let you know that everything went well with Severin's cath. Pressures & function look good. He was very comfortable throughout the procedure. They were successful in getting a new Picc & Arterial line in. Things remain a mystery as to why he is still in the PCTU, but we feel he has just been very ill/septic & always needs a little extra TLC from his nurses. They will continue to wean some of his extra medications from the arrest a few days ago & wean his vent settings so they can start sprinting him soon. We pray that another bug does not show up. It is always an added risk after a trip to the cath lab. Dad & mom are very relieved for the uneventful trip to the cath lab.

Take care & God Bless,

From our hearts to yours,
Amy, Chad & Severin

July 03, 2004 at 09:43 PM CDT
Just realized there it has been a few days since an update. We are concerned once again about more Neuro issues with Severin. Since he arrested the other night it seems that there is a step back again. He has been extreely agitated the last two days and really not sleeping at all. With Versed or Morphine he might drift off, but only for a few minutes. No one will even attempt Chloral Hydrate because if his BP would bottom out they can not reverse it. None of the staff is really comfortable with sedating him, even if he drifts off without anything his blood pressure drops off into the 50's & 40's. Once he wakes up his BP goes back up. It is quite the mystery. We requested Neuro be paged this morning, but received no response due to the holiday weekend.

On a positive note they have been weaning his vent settings & that has been going well. Maybe in the next couple of days he will be "sprinting" again. They also started giving him 5cc of pedialyte per hour to see how his tummy will handle it. He actually had some "tummy time" today the first time since the extubation the other night. His bum is looking a little better, but is still quite raw.

We hope you have a wonderful Independence Day! Thank you for all of your love & support.

From our hearts to yours,

Chad, Amy & Severin

July 05, 2004 at 12:59 PM CDT
Today is a new day. They have started to sprint again. His first two sprints were not as good as hoped, but good enough to keep sprinting. They will continue to sprint for the next week or so, we need improvement! If the sprinting does not get better they are talking about the "T" word again. They have started half strength formula this morning. Finally he gets to eat again. He does look better than he has which has helped mom and dad. We do know that he has a long way to go even, to get out of the ICU. He has many issues in which he has to work on, ie. Neuro etc.

We will post a 4th of july picture sometime today. Its hard to belive that its already July 5th. We have somewhat lost track of time, since every thing is day to day and everything has become routine. So hard to believe that we've been in the PCTU for 40+ days.

We look forward to the day we can all be together in our home. Thank you again for all your prayers and support they are very comforting to us. Keep them coming.

We will post again when we get a chance.


God bless,

Chad, Amy, & Severin

July 06, 2004 at 07:52 AM CDT
Severin is not doing well. They have stopped his feedings. He will be receiving blood this a.m., & is back on Dopamine. His urine output has dropped off during the night. His ventilator settings have been increased. The plan is to get another Echocariogram of his heart today. They have increased his Diuretics. He has been very Hypotensive (low blood pressure) & receiving Sodium Bicarb to increase his BP, & his CVP has been very high. They are also going to culture him again.

Michael has also not had they best night. He is very Jaundice & they are going to check his liver via ultrasound today.

Please keep Severin, Michael, Raymond Jr. & Shay in your prayers.

From our hearts to yours,

Amy, Chad, & Severin

July 06, 2004 at 02:52 PM CDT
Severin has improved greatly from this morning. It was ANOTHER pleural effusion on the left side. His chest tube was clogged once again. The attending Cardiologist was stripping the chest tube & immediately fluid started draining. Within 3 hours he was at about 300cc from the chest tube & 100cc of urine output per hour. His blood gasses are looking good & the Epinephrene & Dopamine are back off with feedings resumed.

Thank you all for your continued support!

God is good, all the time.

From our hearts to yours,

Chad, Amy & Severin

July 07, 2004 at 06:53 PM CDT
Today has been uneventful which we will take. They have increased his feedings up to 20cc per hour. They are weaning his vent settings today and his blood gasses (labs) have been good. He has received platlets 2x today. He has been very active most of the day ie: moving his arms, and twitching his legs, not very restful. PT was up today working with his extremities & neck (neck is very stiff & will not turn). The plan is to really push him in the next couple of days towards sprinting again. They are really watching his chest tubes now since this has set him back a couple of times in the recent past.

We thank you for your messages, its so nice to hear from all of you and feel your love & support.

From our hearts to yours,

Chad, Amy & Severin

July 09, 2004 at 11:28 AM CDT
It has been a quiet couple of days. They have weaned Severin off his Milrinone, Insulin & Adavan. He sprinted well yesterday other than one short episode where his O2 Sats dropped into the 60'-70's. They were thinking that it was positional or has something to do with the large leak with his ET tube. They did have to switch his formula to Portegen as it looks as if his chest tubes are draining Chyle.

There has been mention today that they may try & extubate Severin. I feel he needs a little more time sprinting. We will see what his afternoon sprint reveals. It would be great to move forward & losing the ventilator is the next step or a Tracheostomy.

Please pray for a successful extubation for Severin & continue to pray for Michael, Ramond jr., Shay, Angelina, Halle from Iowa, & also Caleb our HRHS buddy who is having his heart cath today. We also ask that you continue to lift up the Seale family (Scott, Jamie & Sydney).

Nathan Wells was discharged yesterday, just seven days after his valve repair!!

God is good, all the time.

From our hearts to yours,

Amy, Chad & Severin

July 09, 2004 at 10:59 PM CDT
Just wanted to let you know that they decided to hold off on extubating Severin until Saturday if his blood gasses look good. He will sprint again in the morning. They will hopefully change his left chest tube before they extubate. It broke last evening & has quite the patch job. This is his chest tube that always seems to clog off & has had a lot of stretching/stripping done to it. It will definately need to be replaced as he still has a lot of fluid draining from it.

I ask again for you to lift some of our heart families in prayer as their children are very ill. Michael 14, is waiting to get listed for a heart transplant & his liver function is not good. Jordan 5, had PLE & had his Fontan taken down. He went to the cath lab today & the results were not good.

God is good, all the time.

From our hearts to yours,

Amy, Chad & Severin

July 10, 2004 at 07:06 PM CDT
Severin was extubated today.....for about 10 minutes. He was doing fine but he always has quite a bit of oral secretions (mouth goobers). Once he was suctioned it just sort of clogged him up & his 02 sats, heart rate etc. dropped. The crash cart almost came to his bedside, & then he came back up. He was reintubated with a larger ET tube so his air leak is not bad anymore. Dad & mom were praying that he would do well, but we were also well aware that he would more than likely be intubated again. I am sure they will be weaning his ventilator settings throughout the night & start sprinting him again.

We are very concerned about his Neurological status being the reason he will not come off the ventilator and will need a Tracheostomy.

God is good, all the time.

From our hearts to yours,

Amy, Chad & Severin

July 12, 2004 at 12:17 PM CDT
No more plans for sprinting today. Severin sprinted twice, but the last one he was looking a little dusky, desatted into the 60's for a bit. He is snoozing right now very comfortably.

My heart is very heavy with concern today for our heart buddy Michael & mom Kitty. Please as you go throughout your day keep the Czapek family in your prayers. This morning he was very swollen from the chest up to his neck & purple. His feet are also purple. They have no answers as to why. He is the 14 year old waiting to get "listed" for a heart transplant. The BIVAD that is functioning for him, one side is not working.

BiVAD:
Bi-ventricular assist device; the use of two blood propulsion devices or eccs to assist the failing right and left ventricles.

Care page name
Michael Czapek

Gods peace & blessings to you.

From our hearts to yours,

Amy, Chad & Severin

July 12, 2004 at 08:54 PM CDT
I just wanted to let you know about Michael. Below is the post I made on his carepage. I ask that you lift Kitty & family in prayer now more than ever in these difficult days ahead.

carepages.com
michaelczapek

This post is by Amy, a fellow heart mom of Kitty's.

It is with a heavy heart that I make this post. Michael passed away this evening at 8:45p.m. The past few days had been very rough for Michael. His liver was failing & the staff had exhausted every effort to figure something out.

Michael was surrounded by family & friends & the loving staff of POD A whom cared for him. He captured all of our hearts. Father Tom of the Reform Church of Ann Arbor had also spent the day here with Michael. He passed on very peacefully and his heart is now healed, and he is reunited with his father as he begins his new journey. It is Kitty & all who love Michael that have broken hearts & we look to Him for peace, strength, comfort in these hard days ahead.

I ask for you all to lift Kitty & family in your prayers. Michael & Kitty have shown us all there amazing strength through this. I know how much they appreciate all of your love & support & it is needed now more than ever.

We will post arrangements as they are made.

Below is a message from another heart family who lost there sweet daughter not long ago:

One thing that has helped to comfort us since our own loss, is something one of our priests told us during counsel. He said, that when we meet with our children who have passed away, it will seem like no time has passed since the last time we were with them. Although, at this moment, it seems like time crawls - once you are rejoined it will be like you didn't blink an eye. I can't wait for my own "longing" (to be with Rachel again)is over. But, hopefully these words that have brought comfort to us, might be of some comfort. I also know that these children are loved in Heaven more than they could ever be on earth, and that their every need is met. There is no suffering or pain. They have made it to the place where we all are striving to be, and the day when we are all reunited, we will rejoice.

I love you Kitty & hold you in my heart & prayers.

God is good, all the time.
From my heart to yours,
Amy Brenny

July 14, 2004 at 10:04 AM CDT
Plans for Severin today. EXTUBATE. Severin has been sprinting again the last day or so, they started Robinal a medication that should help with his secretions. We are of course very guarded with optimism that he will "fly". I had a talk with Sarah the fellow that was on last evening that I want Severin to have the best chance in being ready for this. I guess they are much more convinced that he is ready than we are. I had not mentioned that Chad had gone back to MN on Saturday and is returning today. They will wait for Chad to get back before they extubate given his last performance when the crash cart was heading to his bedside.

I just was going to be leaving to pick up Chad at the airport when I found out that he had not left Mpls yet. It seems they had a power outage & he has been sitting on the tar mat waiting.

Later today I will be heading to Grand Rapids for Michael's visitation. It has been very rough on all of the staff & families with all of the sorrow around here. Last night another baby passed away. I know as parents & in speaking to our friends who have lost their children how much appreciated the staff is here that care for & love our kids. I cannot imagine working on this unit day in & out. They get close to families & share our pain & sorrow with us. We had even thought of having Severin airlifted back to Minneapolis Children's, but could not even imagine taking him to a place where no one loves & cares for him as he is here. We thank God everyday for bringing us to U of MI & the wonderful, amazing, loving care he receives here.

I wanted you to know that Jordan was extubated yesterday....I posted last Friday that things were quite serious with him.

Please keep Shay in your prayers as they were planning on discharging her on Friday & she is back in the ICU for closer monitoring. This is so heartbreaking for her family to once again step backwards instead of closer to the door.

Raymond is having a quiet day...the plan was to extubate him, but decided to hold off today.

Please continue to keep all of us in your prayers & we pray for continued strength for all the staff here in POD A.

God is good, all the time.

From our hearts to yours,

Amy, Chad & Severin

July 15, 2004 at 10:32 AM CDT
Plans for Severin today RE-intubate. He has been on a bipap mask since extubation yesterday. We have been talking again about a transfer back to MN. If he needs a Trachestomy (most likely) we have a ENT surgeon that we would like Severin to see at Mpls Children's.
July 15, 2004 at 04:40 PM CDT
Amy and Chad have been struggling the last day or so, trying to make the decision as to whether or not to transfer Severin home to Minneapolis Childrens.. They've decided to start the process and have asked Michigan to begin paperwork. This has been a very difficult decision to make, as they know the staff at Michigan, and more importantly, Michigan knows Severin and the rest of the Brenny’s.

HLHS is probably the most complex of congenital heart defects and the most deadly. Michigan cares for more children with HLHS than any other and has an amazing staff of doctors and nurses who are experienced in caring for these special children. Amy and Chad have spent months at U of M and the staff has cared for Severin AND his parents. They love Severin and know him and his medical history so well. It’s very hard to leave that loving, comfortable environment for a new one that knows nothing about Severin and all that he has been through. Amy and Chad have no doubt that they’ll get great medical attention at home at Children’s, but it’s hard to take Severin someplace new, none the less. Amy was even ridiculed recently for expressing her hesitation to move Severin to Children’s in her last post, but her hesitation had nothing to do with the medical care he’d receive—just the unfamiliarity of it and the sadness of leaving the place that has cared for him and saved him time and time again.

Please support Amy and Chad as they move towards this new path of their journey with Severin. He needs our prayers as much now as any time. He was re-intubated today around 3:30, after being on bi-pap (a tight mask that forces air down his lungs to breathe) and they do not foresee him being able to be extubated at all now, due to neuro issues. He will mostly likely be getting a trach sometime soon. Amy will post later to update on his status.

Please keep sweet Severin in your prayers, as well as Amy and Chad—they need to feel your strength as they are struggling with theirs.

God Bless,
Jennifer Dillard

July 15, 2004 at 11:01 PM CDT
This morning I spoke with Severin's wonderful cardiologist Dr. Wright in MN. I wanted to speak with him about transferring to Children's Minneapolis. After my emotional conversation with him we spoke of a few issues that need to be addressed before the move. His chest tubes are still draining substantially. This issue needed to be addressed by MI.

After we discussed our wishes with Dr. Armstrong (attending cardiologist on the unit) this afternoon regarding the transfer to MN plans are rolling into place. Friday Severin will go to surgery to have a Thoracic duct ligation to hopefully solve the drainage problem. He is 2nd case...sometime in the afternoon. Dr. Bove cancelled his 2nd case so he could take care of Severin. Sorry to the family that was postponed. It must be the seniority we have in POD A. This morning before all of the move conversation, they discussed Severin's PICC line that has gone bad. The plan was to take him back to the cath lab to place another PICC line. I mentioned to the fellow on call this evening if this could be addressed in the operating room tomorrow. They will discuss this tomorrow morning & hopefully this will be taken care of then. Severin will still have chest tubes draining after the surgery. I am not sure what the time line will be if it does in fact solve the problem. It will take probably a week or two to facilitate the transfer. The doctors here will have to communicate with all of the appropriate doctors in MN.

DEEP BREATH>>>>>
I know I have mentioned the Neurological insult Severin sustained from the sepsis regarding the Enterobactor infection. What Neuro had told us then was that there was insult to the watershed part of his brain. This affects the movement of his legs (walking). They had told us it was a wait & see, and last evening they came & told us that we would have seen improvement by now. Also we were told there was basil ganglia which affects behavior. We were also told that Severin is blind. This was only mentioned to us before by our nurse about his vision being affected. It has been quite obvious to us but really took us back hearing everything verbalized by Neurology. The Neuro issues are what is keeping him on a ventilator.

It is quite devastating that we are not leaving U of MI with a happy ending. We are leaving to start down a new uncertain beginning of long term care. I imagine once Severin has a Tracheostomy it will be a few weeks in the hospital of figuring out his vent settings as he will come home on a ventilator. Then there is the rehab, we are uncertain of what the plan will be just yet.

We appreciate all of the messages from all of our heart families who have been in this situation & can relate to our hesitation of leaving our security blanket (POD A). It will be leaving our home away from home where we have spent about five months total here. Severin has several nurses that follow him & often if a couple of them are working the same shift it is up in the air to who will win the coin toss to care for him. From a cardiac standpoint he is doing well & so there is no reason to stay here in MI.

God Bless.

Amy, Chad & Severin

July 16, 2004 at 01:37 PM CDT
Just wanted to let you know that Severin is out of surgery. Everything went well & we are just waiting to see him. We will not know if this fixed the problem for a few more days, it is just going to be a wait & see. We will post more in the days to come as plans are arranged.

Amy, Chad & Severin

July 16, 2004 at 10:53 PM CDT
Things have been shaky post-op. There is blood when they suction him. Severin's 02 sats are in the 60's & his vent settings are at the max. He has received albumin several times to keep his blood pressure up. Mom & Dad will be staying the night in the waiting room. There is a chance he will go to the cath lab tonight. We are praying he just needs more time from surgery & that is not a even more serious issue of a pulminary embolism. Please pray for our little boy.
Amy

July 17, 2004 at 08:10 AM CDT
Severin is very ill. He is receiving a lot of support to keep his pressures up. His tummy is very swollen & rigid & if this ends up being the problem it would not be good. There is some fuid in his stomach that they will try & pull out. Our family is flying in this afternoon. We pray for strength for some very difficult decisions that we may be faced with, as this day moves forward.
from our hearts to yours,
Brenny bunch

July 17, 2004 at 07:59 PM CDT
Today was the hardest day of our life. We let our sweet little boy go to the loving arms of God. It was very peaceful at around 7:50p.m. in the loving arms of his mother & father.

God is good, always.
From our broken hearts,
Severin's mom & dad

July 19, 2004 at 04:17 PM CDT
Chad & I arrived back home around 8:00 p.m. last evening. We are working on arrangements. If any of you have pictures that you have taken of our sweet little boy we would love for you to share them with us. We also ask that if you wish to send flowers, that you consider a memorial instead. We would like to find a special organization to honor the memory of our angel.

Visitation
Friday 5-8 p.m. Mattson Funeral Home
343 North Shore Drive
Forest Lake, MN (651)464-3556

Funeral
Saturday 10:00 a.m. Faith Lutheran Church
886 North Shore Drive
Forest Lake, MN (651)464-3323

*visitation is also 1 hour prior to the service.
*buriel with be immediately following at Calvary Cemetary in Forest Lake.
*Luncheon to follow back at Faith Lutheran Church

*we are about 40 minutes north of the Minneapolis-St Paul airport.


Brenny
Severin Grant Brenny, born September 23, 2002 at University of Michigan Hospital, Ann Arbor, age 21 months of Forest Lake. Our brave little boy passed away in the loving arms of his parents Saturday July 17 at U of Michigan Hospital, Ann Arbor. He fought so hard to come home with us. He enriched our lives with so many gifts & showed us what life was truly about. Preceded in death by grandfather Eugene Grunwald, & many other heart angels. Survived by loving parents Chadwick & Amy (Grunwald), big sister Lauren, twin brother Carson, grandparents Harvey & Florence Grunwald, Forest Lake, Severin & Carol Brenny, Andover, aunts & uncle, Tina Brenny, Maple Grove, Wendy Grunwald, Fridley, Bruce & Susan Bain (Pepin) of Hugo, and many cousins.

91 July 31, 2004 at 08:43 PM CDT
Here we are two weeks later. We were shocked last weekend to see so much of our heart family come to support us. Kitty from MI (mom to angel Michael), Jamie from MS (mom to angel William), Jim & Karen(Nathan), Amy (Halle), Wendy (Caleb), Jennifer(Faith) all from MI. Jessica (Bo) from TN. Not to mention the family & friends that came as far as NC & CO. Also there is Melody, what an angel...taking care of Lauren & Carson as if they were her own. All of the help when we came back into town (at the brunt of my crankiness). You are an amazing friend/sister!

Kitty stayed the week here. How wonderful to spend the time together. I had a hard time last evening just thinking of her going home. We have had a very eventful week. We spent a couple of days at Chad's parents cabin in Alexandria. Tuesday evening I missed the dock while getting off the boat & broke my tooth along with some bruises, my cell phone also drowned. Just call me Grace. The heartbreaker was that someone broke into our cars that night. So upsetting because our digital camera was in Chad's car. The memory stick with pictures from Michigan...gone. I have called the pawn shops but chances of recovering the camera are slim to none.

We are doing as well as can be expected. It helps to have two little distractions running around. Lauren & Carson have their own issues going on too. I cannot be out of Carson's sight. He thinks we will dissapear on him again. Lauren talks about how she misses Severin & wishes & prays for him to come back home. We are grieving privately. If your phone calls go unanswered please do not be offended. Just wanted you all to know that we appreciate all of your love, prayers & support.

Please keep our heart buddy Shay in your prayers as she has had many setbacks & is back in POD A. A few weeks ago they were getting closer to going home. She has been hospitalized for several months after her heart transplant. We miss you Lisa, Adam & Shay. Start clicking those ruby slippers harder!

We miss our little boy so much. It is so hard to believe he is gone!

God is good, all the time.

Amy, Chad, Lauren & Carson

August 01, 2004 at 12:23 PM CDT
www.kare11.com

Tonight at 5:00 or 10:00 p.m. news they should be running our plea to have the memory stick returned. I did not do very well speaking. Emotions were running quite high.

September 01, 2004 at 12:06 AM CDT
Many of you have inquired as to whether or not the memory stick or camera has been recovered and the answer is no. Stolen memories.

Nights are very difficult for myself to fall asleep as my thoughts reel about my sweet little Severin, my heart is so heavy with sadness. There are so many “what ifs” that run through my mind. I am sure as you sit here reading this update & are one of my heart friends grieving for you own child as well, you can relate to this very well. There are so many unanswered questions that we will probably never have answers for. Perhaps most difficult is that it was not Severin’s heart, but he lost his life due to an infection.

Here we are heading into September. On September 2, 2002 was the day we first went to Ann Arbor. This month brings many birthdays of our heart family we met on our journey, Meric & Jordan (August), Benjamin, Bo, Faith, Nathan (September), & Caleb (October). I am happy to report that everyone is doing well. Also good news to report that Raymond jr., Angelina, Jarom & Shay are all at home doing well.

Chad started his new job yesterday. It is just about 25 minutes from home just before Minneapolis. He has kept very busy here since we returned from MI with many projects around the house, but he is happy to be back to the grind after 5+ months since he left MB.

October 1st I will be in MI, I am going to hear my song "Angels among us" at the Alabama concert in IN with Kitty & Elaine. On Saturday in AA they are having a memorial walk & tree planting ceremony, so we are also planning on attending that. There will be several other heart families there in honor of their children. Sad that these are the circumstances that brings us all together.

There are no words I could adequately use to thank all of you for your ongoing love & support and what it means to our family. We are so thankful for all of your calls, cards, messages etc. Also, please feel free to visit www.severinbrenny.com a webpage my sister made in honor of Severin.

Take care & God Bless,
Amy, Chad, Lauren & Carson

October 20, 2004 at 10:13 PM CDT
How difficult it has been to bring myself to post on Severin’s carepage. So many previous posts that I can go back to & read the great news & joy we had posted about, 1st Birthday, holidays, milestones. Every day was such a great day because I saw such a miracle from the moment I jumped out of bed!

September was very difficult, but then I think every day is. As I last posted I was headed to MI the 1st weekend in October. Just getting off the plane was difficult, although it was good to have a few days without the kids, just to have my thoughts uninterrupted. I spent time with many wonderful families, although this was the group we so did not want to belong to. The day of the memorial walk was two years to the day that Severin had his Norwood operation.
Ella’s father Heath told me something that maybe can give you some insight into the loss of a child. Losing a child is something you never get over or recover from, he compared it to someone with alcoholism disease saying that you find ways to cope & get through one day at a time. At any moment you can “fall off the wagon”. There are days that are harder that others but we are getting through each day.
Another thing we have learned is not to tell someone how they should grieve or what they should be doing. Just as I would never tell someone who they should vote for. I could never relate to anyone who has lost a spouse whether from death or divorce because it is something I cannot relate to. I have however lost my father, brother-in-law & all my grandparents in a very short period of time (all within about 4 years). When people often say to me I know what you are going through I just lost my grandparent…it really does not compare when I think of how my grandfather had 98 more years to live than Severin.
I often think of our parents & how difficult it is for them, not only do they suffer the loss of Severin, “grandparents cry twice” for us as well as Severin.

The other evening we celebrated Carson’s second birthday (late) he was sick on September 23 with an ear infection, none of the day had gone according to plan. Thank you all who thought of Severin & Carson on their birthday, it was so thoughtful for all of the cards etc. It was very bittersweet to mourn Severin yet still celebrate for Carson. It breaks my heart to think of Carson as a twinless twin growing up.

We recently purchased over 100 books called “The Angel with the golden glow” I have sent almost 20 out other families who have lost a child & the rest we are donating to U of MI hospital. What a sweet children’s book that we even find comforting to read. A heart family we know from email (littlehearts.org) sent it to us (thank you again Lois). It is just one of the many things we will do in the future in Severin’s memory. We will always be advocates of CHD awareness/research the #1 birth defect of babies!

With the anticipation alone of the upcoming holidays, we had decided back in July to go away for Christmas. We are by no means avoiding the holidays, we just know our limits & what we can handle. This year we need a change of scenery, right now we are looking into Cancun or somewhere on the beach. We invite all of our friends & family to come along.

Sorry this could not be a more upbeat post for you all, just needed to update all of our wonderful supporters. Just want you to know that we do laugh & smile with Carson & Lauren.

Take care & God Bless,
Amy, Chad, Lauren, Carson & our angel Severin
 

October 21, 2004 at 10:02 AM CDT
Info on the book:

*The Angel with the Golden Glow is based on the true, heartfelt story about a special little boy & his family. Lessons of life & beyond are portrayed beautifully in this magical children's tale. Join the Angel with the Golden Glow on his journey of love, joy & courage. Discover with him the power we all have to warm the hearts of those we touch.

Elissa is a hospice nurse who cared for this little boy.
www.angelwiththegoldenglow.com

#1-877-887-2828
Elissa Al-Cokhachy

The book we received was signed by the author, she was happy to personalize the inside cover of 15 books for us. I know she would be happy to do the same for you.

*she also has another book to check out. I know it is for children whose parent/grandparent or loved one is termanally ill to help them understand.

 

December 01, 2004 at 09:23 PM CST
Just wanted to post this info below for anyone interested in this ceremony on December 6th. I have heard the turnout is very large at the one here in MN. I will post the link to the website for anyone wanting to check out the map of locations for the "Angel of Hope" statue. I know there is one in Memphis TN, a couple in MI etc.

Candlelight Memorial at Angel of Hope
Each year a candlelight memorial is held at the Angel of Hope statue. This year the memorial is on Monday, December 6 at 7:00.

The Angel of Hope is one of more than 50 Christmas Box Angels throughout the world that are gathering places for anyone grieving the loss of a child of any age, for any reason.

The statues are replicates of a statue commissioned by Richard Paul Evans, author of The Christmas Box. The public is invited to attend this short, simple secular ceremony. Candles will be provided. Attendees are invited to bring a white flower to leave at the base of the statue in memory of loved ones.

www.richardpaulevans.com/statue.html

***Also on December 12 at 7:00 p.m. is the Worldwide Candle Lighting in Memory of All Children

The Worldwide Candle Lighting is held every year on the second Sunday in December, at 7:00 PM in every time zone. As candles burn down in one time zone, they are lighted in the next, creating a 24-hour wave of light that encircles the globe.

I ask that you all light a candle that evening in your window.

Love,
Amy & Chad

 

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