TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

Slowly Getting Better But They Did Find Pneumonia!

Since our last update, Tyson’s blood work indicated some sort of infection and was put on oral antibiotics.  On Tuesday morning Dr Murphy heard less air entry into Tyson’s left lung, so he ordered chest x-rays.  You’ll never guess what they found!  Pneumonia.   

 So on Tuesday evening Tyson had an IV placed in his hand and IV antibiotics were started.  He wasn’t thrilled about it but at least the IV is in his hand he is able to bend his arm and lay on his side if he wants.  Yesterday the O2 was turned off at about 6pm for the evening, so we were able to get out of the room for a bit.  Unfortunately, when he sleeps he de-sats considerably so O2 had to be turned back on at about midnight.  I wasn’t really holding my breath, because I know this is the trend with Tyson, although I did lay awake just waiting for the sats monitor to alarm.  Inevitably, it did, and his O2 sats hovered in the mid to high 70s.  Not good enough, so O2 was started again.  We never take the nasal prongs out of his nose or off his face until we know for sure he’s good to go.  It’s much easier to just turn the O2 machine on while he sleeps so he doesn’t even realize he’s back on the O2.  Except for the fact that the condensation that built up in the O2 tubing for the past 6 hours blasted up his nasal passageway at 12:30am and he awoke with a shout and temper tantrum.  Fun times!
 

Today the O2 is off again and he is satting in the mid 80s on his own.  His heart rate has also come waaaay down in the past 24 hours, indicating that the antibiotics are doing their job and he is feeling a LOT better.  I am hopeful that he will be able to get through the night without O2 since we’re giving his body a good head start by being off O2 for most of the day before heading into the night.  It will likely be a restless sleep tonight.  When he’s on O2 overnight he barely de-sats at all, unless he needs it turned up a bit.  Except for every  2 hours when his IV pump alarms, it’s not a bad sleep.  Tonight might be touch and go, depending on how he tolerates being off oxygen overnight.  I’m not going to hold my breath.  But in your prayers, *please* pray that Tyson has a good night and we can go home tomorrow.
 
Talking with his brother 'Boy' on the phone.  This was the biggest I'd seen him smile all week

Tyson is in pretty good spirits.  Yesterday we took him out of the room for a ride in the wagon.  We moved only two inches inside the room and he exclaimed, “This is so FUN!”  Then when we entered the hospital hallway, he looked around and exclaimed, “This is so BEAUUUTIFUL!”  I think it’s safe to say he’s pretty sick n tired of the same four walls.  For the past two days he’s been much more tolerable, which indicates he is starting to feel much better.  He enjoyed a visit from his brothers and sisters yesterday, and he talks on the phone with them or his Dad daily.  Things are a little easier on the family when the oldest is old enough to babysit for a few hours.  Brian gets the 3 oldest off to school, brings Addisyn to a babysitter, then continues on with work as normal. He doesn’t have to rush home for the older kids since they can be home on their own for a while until he gets home from work.  Last night I was able to go to our last choir practice before the upcoming concert, while Brian stayed at the hospital, and the three oldest were home on their own.  Then after choir I came back to the hospital right away so Brian could get back home and the boys could get to bed.  I’m hoping we don’t have to do all this juggling very often, but at least with the kids getting older it makes it somewhat easier. 

 We’ve been so blessed by the communion of saints.  Brian and the kids have never been without a meal, and I even have had some delicious food brought to me here in the hospital.  There are definitely some blessings to being hospitalized locally as opposed to being way down at Sick Kids.  Even though I feel I have to be a little more pro-active with the nurses here who don’t always understand Tyson’s cardiac issues,  I am confident in the doctor’s abilities.  If they ever suspected it was more than a respiratory issue and could be heart-related, they wouldn’t hesitate to transfer Tyson.  
 
Playing on Uncle Garth's iPad
 
 
Being here it’s also much easier for people to drop in and visit, and Brian and I can trade places much easier, and of course having my Mom volunteer to stay overnight twice was very helpful too.  A good night’s sleep is always a good thing when you have to have patience to deal with Tyson who can be challenging when he’s sick.
Playing 'Angry Birds' with Uncle Derek

Some pretty serious Lego building happening here with 'Aunt' Karen and Lydia
 
Thanks to everyone for all the love and support, and especially your prayers.  We would like to ask you to please pray that Tyson has a good night tonight, that he doesn’t require oxygen at all and we can go home tomorrow morning.  I’d love to be able to update you tomorrow from the comfort of our own home J

 Melissa <3 o:p="">

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