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!

Day Nine Post-Glenn - Thursday, May 21, 2009

"Peace I leave with you; my peace I give you.
I do not give to you as the world gives.
Do not let your hearts be troubled and do not be afraid."
John 14:27
Tyson had his heart cath done today. Thankfully they did not have to do any coils or stents at this time! There were no collateral veins that they could find and although the pulmonary arteries are a little small, the cardiologists do not think it is significant enough to be causing low sats. So the heart cath was completely exploratory and it ruled out any cardiac issues. I asked about the future prognosis for the hypoplastic (small) pulmonary arteries. (If you remember, Ty's surgeon Dr. VanArsdale said they might need one more surgery before he can continue on with the final Fontan surgery.) This cardiologist Dr. Benson said that it is possible that Ty might need another surgery on these arteries but it is unlikely. If he did, it would be a balloon angioplasty or a stent done in the cath lab again (so no open-heart surgery.) They will keep a close eye on these arteries with future echo cardiograms, but as long as they continue to grow as Tyson grows, they should be fine. (But we are keeping an open-mind to changes of heart/mind along the way!)
So they are thinking that the low sats are from his respiratory issues and with a combination of the antibiotics, regular physio therapy, and time, they should improve. How much time? Only God knows and we will not let our hearts be troubled about this. In His time He will heal Tyson.
So there are two respiratory issues that could be causing the low sats and it is difficult to tell which one is affecting the sats the most. The right upper lung collapse (where the pneumonia was found) is healing more and more each day. There is also the left lung compression I described yesterday. No one knows which one is causing the low sats, it will be a waiting game to figure it out and hopefully it doesn't last too long.
I asked the doctors on rounds this afternoon what the plan is for the next few days. They said that we continue with the antibiotics and physio and the sats should slowly make their way up.
This morning before the heart cath, the sats were better than I have seen them since before Ty's surgery, mid-to-high 70's. In the back of my head I thought, "Hmmm.....maybe we won't need a heart cath afterall." But it's good to rule out the cardiac issues too. Once Ty got back from the heart cath, the sats were back in the 50's, even dipping into the 30's when they suctioned and bagged him. After physio they made their way back up to the high 60's.
Ty handled the heart cath ok. He came out of the general anasthetic ok and smiled at me when he woke up. He's been very happy lately but still needs to have his hands restrained or he will try to pull the ventilator out. He's very sneaky too! He tends to hook a finger or thumb in there and not let go!
Ty also had a hearing test done this morning. We have entered Tyson into a study on babies on lasix for prolonged periods of time, as they can sometimes suffer hearing loss as a result. We've also met a lady here whose daughter suffered profound hearing loss as a result of being on gentamicin. (Ty is on gentamicin as an antibiotic for the pneumonia, and lasix as a diuretic to help him flush out fluids.) Anyway, Tyson endured an hour long hearing test which indicated that he has mild hearing loss in both ears. The audiologist was pretty sure that it is a result of congestion in his ears due to the pneumonia, and she says the nerves appear to be in tact. Hopefully his hearing comes back once the pneumonia clears up completely. It sure explains some suspicions I have had about his hearing since the surgery.
We plan to have the kids over for Friday night and Saturday. A wonderful charity called the Jennifer Ashleigh Children's Charity has given us a donation to use towards hotel accommodations. So I am sure the kids will look forward to another visit to Toronto, sleeping in a hotel and swimming at the pool. They also enjoy Marnie's Lounge, a games lounge here in the hospital. Although they cannot see Tyson until he is on 4D, it's good to have some family time, even if it's not in our own home.
Till next time,
Mel:)

7 comments:

Mel said...

Well that is awesome news! Yay!! Great to hear that there are no collateral veins and that there is a lesser chance that he will need that additional heart surgery. What a great relief. Hopefully Tyson will heal quickly and his sats will improve soon so that he can be extubate (any ideas when they plan on doing this?!?) and can come home soon. Love you seesta!!

gerryandmargaret said...

Great news!! Hope he'll be coming home soon. Enjoy the w/e with the kids!

take care

Margaret

Anonymous said...

Wow! What a busy day with lots of info! Tyson seems to be on the mend (albeit s l o w l y) but improving!!
Enjoy your weekend with your other children!
I've got the camera emptied out for field day, so hopefully I can get it together to email you some pics...
Keeping you in our prayers.
jkjajh?

Anonymous said...

Hi Brian & Melissa
We look out for your update each day. We continue to remember you in prayer and thank God for eery little improvement. Keep strong and cast all your cares on your Heavenly Father. he will carry you through!
love Henry and marg

Sara said...

Have a wonderful weekend together!

Grant and Marg Kottelenberg said...

Hi Brian & Mel,

We are thankful to hear that Tyson is making some progress, even though it is slower than hoped. We pray that God will bless Tyson's recovery and give him ... and you ... the strength, patience and comfort needed to persevere during this trial. I would have loved to come and visit ... and seriously considered it except that we have had our week of everyone being sick with the flu and we definitely don't want to expose Tyson or you to that. Go in God's strength which He will give to you each day ... His mercies are new every morning!

With Love,
Grant, Marg & family

Scott and Tanya said...

Hi,
still thinking of you and praying for you everyday. Hopefully we'll see you next week either in Shelburne or I'll come to Toronto. Take care.