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!

We're Home!

We’re home!  Dr Murphy said that even though Tyson has been weaned off the oxygen and the antibiotics are working well, he can still hear that the pneumonia isn’t 100% gone.  He said we could go home but we had to promise that Tyson will rest for the next two days and I won’t let him run any marathons.  He was sent home on oral antibiotics to continue to treat the infection.  We will also continue with his ventolin and pulmicort, we will see his family doctor as soon as possible next week, and then follow-up with another chest x-ray in the next month to make sure the infection is completely gone.  Because it was completely respiratory, we won’t have to follow-up with cardiology at Sick Kids.  *phew* I was hoping we can make it that six months in between Sick Kids visits, as we’ve never gone longer than 5 months between visits ever.  We see cardiology again at the end of May.    
I love how his eyes are the exact same colour as his Sick Kids scrubs
 
Although he is still quite tired, (and gruuuuuumpy!) Tyson is very glad to be home and so is the whole family.  We once again give praise and thanks to God who has allowed Tyson to heal and come home.  Thanks for all your prayers that Tyson would be off oxygen overnight, they worked!  We both had a pretty restless sleep last night so we are really looking forward to our own beds again!  I’ve definitely seen enough of Headwaters Hospital for a while now. 
 
Thanks to everyone who helped our family out in the way of providing meals, bringing food to the hospital, spoiling Tyson with toys and treats, taking care of Addisyn, and most of all for your prayers.  Please continue to pray for Tyson’s health in the month to come as he completely recovers from the pneumonia. 
 
Brian and Melissa

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="">

Have I Ever Mentioned How Much I *Strongly Dislike* March?

March and April have been interesting months to say the least.  Ever since we arrived home from Florida at the end of February, Tyson just hasn't been himself. The first 2 weeks after our trip he had an upset stomach, didn’t want to eat, and was just super irritable.  His INR level was always out of whack and we’ve been messing around with his Coumadin dose ever since.  Then he caught a very bad cold, which thankfully he was able to overcome on his own. 
 
His sister Addisyn was next with the cold, resulting in little sleep, lots of coughing, and then her respiration rate increased.  It's hard to know when to panic with our 'heart healthy' children, but when she started vomiting mucous and her resp rate increased, I brought her in to emerg on Saturday evening, March 23. 


She was admitted to Headwaters with bronchiolitis and pneumonia.  She was admitted to the pediatric ward for some oxygen therapy and regular ventolin masks to maintain healthy oxygen saturations. (She was satting 84-89 when we got her to emerg...those looked more like Tyson's numbers than hers.)   She stayed overnight for three nights on ventolin masks and oxygen.  They sent her home on antibiotics and inhalers to strengthen her lungs. 
She remained pretty happy through the whole ordeal
We finally got home from the hospital on Tuesday, March 26th, and then Tyson started coughing again.  By Saturday we knew he was likely not going to be able to fight it off.  Early in the evening he spiked a fever, so we gave him some Advil and his ventolin mask, tucked him into bed and prayed for the best.  We have an O2 sats monitor at home which indicated that for most of Saturday night his sats were 71-76.  This is way too low for Tyson, who normally sats at 88-92.  Cardiologist at Sick Kids has ordered that he always stay above 80 whether awake or asleep.  We knew late on Saturday evening we’d be bringing him in to a hospital for some oxygen, but we wanted him to get a good night’s sleep first.  We knew if we brought him in on Saturday night, we could say good-bye to the whole night and Tyson would just be too grumpy to deal with.
In Emerg they put him on high-flow oxygen mask - he certainly doesn't look to sick yet...
So he was admitted early Sunday morning, March 31.  The respiratory therapist was paged as soon as we got into Emerg and Tyson was put on O2 immediately.  His chest x-ray at that time did not indicate pneumonia but showed he has a viral bronchioloitis.  His blood work didn’t show any indication of elevated white blood cells and all his numbers were normal.  There’s no sense treating a virus with antibiotics, especially on a child with an already weakened immune system – as antibiotics kill all the good bacteria along with the bad.  Both Dr Murphy and Dr Cormier didn’t like that option for Tyson, also because antibiotics really mess with his INR levels (how thin his blood is – antibiotics would complicate his Coumadin dose too.)  So the plan of action was oxygen therapy and regular ventolin masks and just ride the virus out. 
He's happy to be going to 'his bedroom' to watch tv
On Monday he wasn’t feeling or looking any better at all.  Actually he appeared much worse. Fevers continued, low oxygen continued throughout the day but especially when sleeping, and he was pretty cyanotic looking (blue).  His O2 requirements on Sunday overnight were up to 5 litres at 80%...that’s quite a lot of oxygen for him.  Even on 80% O2,  his sats would still dip into the mid 70s when he got into a deep sleep.  The type of oxygen he is on is heated to his body temp and humidified so he won’t dry out.  It’s also the highest flow O2 we can get here at Headwaters.  His next step if he needed more O2 would be CPAP or intubation.  Once that happens to a child his age here in Orangeville, they automatically transfer him to Sick Kids.  Thankfully, he made it through Sunday night on 80% O2 and close monitoring, with respiratory therapy in and out of his room all night long. 

Tyson got a giant Easter Bunny from the nurses
 
 Monday morning I spoke with Dr Murphy and expressed concern that although what they found was viral, how do we know Tyson’s not brewing pneumonia in his lungs as we speak?  His fevers continued, coughing was getting worse, not better, and Tyson was absolutely miserable.  Unbearable.  Intolerable.  So Dr Murphy ordered more blood work,  and the results were an elevated white blood cell count, and his differentials and lymph counts indicated he is indeed brewing a bacterial infection.  This also means we brought him in to ER even before his wbc indicated a problem - feeling like a really good Mom right now!! :)  We don’t know where the infection is right now, since his lungs still sound clear on examination (they often *sound* clear but I’m sure if he was x-rayed right now I am pretty sure I know what they’d find…..)  So, he is now finally on antibiotics to treat it, before it has a chance to settle in his lungs and cause even more harm.  Thankfully, because he is eating and drinking ok, the antibiotics are oral and not IV. 
Monday night my Mom stayed with Tyson overnight so I could go home and get a good sleep.  (And it was a great sleep, thanks Mom!)  She said he only de-satted twice, with activity or coughing.  This morning he looks much happier.  His cough is still very ‘yucky.’  Dr Murphy heard something in his left lung, so he also ordered chest x-rays today to double check his heart for enlarging or fluid.  I havne’t heard results from those x-rays yet, but my guess is if there was anything alarming, we’d know about it by now. 
 Tyson watches a lot of tv right now, since he will de-sat with too much activity.  I have the laptop here at the hospital, so he has been playing some games too.
Playing Lego and Spiderman in his Sick Kids scrubs
On the whole, it seems as though he has turned the corner from bad to slightly better.   He is definitely heading in the right direction, but could still be a few more days. We know from past experience, that his O2 requirements can still be high even after the infection clears. We don't have home O2 so he'll be here until he can sleep through the night without O2. 
Please continue to keep Tyson and our family in your prayers.  Thanks to all who have offered help in the way of meals, or helping out with watching Addisyn.  We appreciate all the help and the communion of saints is indeed a blessed thing!
Melissa