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 nine 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!
Dr. McCrindle reported that the results of his ecg are unchanged from his last ecg in August. No change is good, it means his heart is still functioning how they expect it to after a Glen surgery. His Fontan surgery is likely to be between 18 months and 30 months of age....but this estimate changes every time we see the cardiologist so we aren't counting on anything concrete.
Tyson also saw the audiologist today to follow-up on his hearing. We are happy to report that there is nothing wrong with his hearing!! We weren't surprised at this result because we haven't really been worried about his ability to hear, and he can already speak some words.
He now weighs over 23 pounds (bigger than my other kids at this age!) and he is eating and sleeping well. He is going to be one year old next Saturday and is still not crawling, but he is soooo close! He is able to pull to a stand with great effort and is starting to cruise around furniture. Once he starts crawling we're sure he will be motoring around like everyone else his age.
Some of you have asked if his heart will be "fixed" after his third surgery. Tyson's heart will never function normally. The surgeons have just "replumbed" it the best that they can. It is completely under-developed on the right side and the surgeries have made it so that the left side now does all the work, without any help from the right side. His heart will never function like a normal heart and will always need close monitoring to make sure it is still functioning well.
For Tyson's upcoming birthday, we will be hosting a come-and-go birthday party in the church basement on Saturday, November 21, 2009 from 10am-12pm.
Please join us there for some coffee, cake and refreshments.
Brian and Mel:)
The next stage of surgery, called the Fontan, will be when Tyson is somewhere between 18 months and 3 years old. It seems that every time we see Dr. McCrindle, he gives us a different idea of when surgery will be. (He also hesitated when we mentioned our trip to Florida by plane this coming fall - a trip that he consented too at our last appointment in June. We didn't let him change his original decision okaying the idea though, since the flights are already booked! LOL Dr. McCrindle also knows the Chief of Cardiology at the Paediatric Hospital in Orlando; this cardiologist actually trained under Dr. McCrindle! So they happen to know each other quite well.)
Tyson now weighs 19 pounds, 12 oz at 8 months old. He is gaining good weight, and seems to pretty much be keeping up with what our other kids weighed at this age. And they don't have a heart condition! He is also sitting well on his own, and although he is nowhere near crawling yet, he is starting to show some interest in moving around to grab toys that are out of reach. He'll get there when he is good and ready.
That's the update for this time.
Brian and Mel:)
Yay! We finally made it home yesterday afternoon. The doctors were happy with Tyson's progress so they released us. We are trying to settle back into the swing of things. Despite Tyson being awake all night in the hospital on Monday and Tuesday night, he had an OK night last night...probably because it is a bit darker in our house. He is still not as strong as he used to be and most likely will require some physiotherapy at home to rebuild his muscles. The surgery has interfered with the strength of his head and neck muscles, shoulder muscles, and pec muscles so he is not quite as sturdy as he used to be. We will also be receiving home care 3 times a week to keep an eye on his heart function (like heart rate, respirations) and the state of his incision. He is still not eating quite as much as he used to so we have to keep a close eye on that, but overall he seems happy to be home. And we are too!
For who is God besides the LORD ?
It is God who arms me with strength
I will be glad and rejoice in you;
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.
Even youths grow tired and weary,
but those who hope in the LORD
We will shout for joy when you are victorious
Now I know that the LORD saves his anointed;
Some trust in chariots and some in horses,
In the morning, O LORD, you hear my voice;
"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1: 2-4
Today Tyson had to take a big step backwards in his progress. (Two steps forward and one step back is what he seems to like to do!)
Brian and Mel:)
On Thursday we went back to Sick Kids for a check-up and Tyson's pneumonia has cleared up quite nicely. You'd barely know he had anything last week, as everything seems to be cleared up and his chest and lungs sound completely clear. He remains on the antibiotics for another few days to make sure the bug is killed.
He did, however, lose a bit of weight from his discharge day until now. I am a little concerned about this but do realize that, like any of us, it does take time to regain a full appetite. I am borrowing a baby weigh scale again from Community Care Access Centre to keep a close eye on things. Hopefully he can gain some of the weight back that he lost as he needs to keep strong for his next surgery.
We have another date for surgery. It's Tuesday, May 12, 2009. Hopefully things don't get changed again; we sure have had enough waiting! Tyson's echocardiogram last week showed that from a heart perspective, he is doing fine and the surgery can wait till May. From a respiratory perspective, the doctors would like Tyson's lungs to be 100% healed before going in to the surgery. If he goes into surgery 100% healthy, he will have a shorter recovery time than if they operated on him while still a little sick.
The expected recovery time for the Glenn surgery is 5-7 days. This is just a general guideline, based on how other healthy babies have recovered. We never know what to expect, of course, but as long as Tyson progresses and heals as he did the first time, one week or so is a realistic timeline.
Thanks for keeping us in your prayers. We pray that Tyson will remain healthy until this surgery date and that all will go according to God's will.
Brian and Mel:)
Tyson is doing much better. He is still coughing a fair bit and his chest still sounds a little rattly but the antibiotics should clear things up nicely.
I am glad to say that Tyson didn't take long to figure out how to sleep in his own bed again. He went to sleep at 9:30 pm and wasn't up until 8 am this morning. So happy that he is back to his normal sleeping pattern. So far so good!
We go back to Sick Kid this week Thursday for a check-up to make sure things are staying in the right direction.
Thanks everyone for your prayers and words of encouragement. They mean so much to us and we are reminded again of how precious life is. We also entrust Tyson into God's Fatherly Hand.
Brian and Mel
Braden, Merrick, Kenya and Tyson
Keeping this one really short (honest!)
What a Good Friday it is! Today we can remember God's gift of grace to us in sending His Son to pay for all our sins. It's days like today when I miss church that I realize how much we sometimes take for granted that it is indeed a privilege to go to God's house to worship Him.
When I called in to Tyson's room this morning to see him, I was informed that he was moved from his isolation room to room 53 in ICU. I sat with him for a while, then later crawled back in bed because I realized it was only 6:10am. When I called in later to see him again at around 8:30, he had moved again, but this time to a Step Down room on the fourth floor! He only spent a few hours in Step Down and then was moved into his own room on 4D, room 22. YAY!
Before we can go home, Tyson needs to be breathing well on his own, need no more suctioning, be feeding well and his lungs must be clear. So those are the things we are waiting for.