The heart surgeon is satisfied with the current oxygenation level and doesn’t want to risk surgical intervention at this age. Therefore, he would like to wait until the bi-lateral Glenn operation to do any rewiring of the heart. This will take place anywhere from 4 to 6 months.
The cardiologist has some concern about the collaterals. Collaterals tend to be unstable and can put a lot of pressure on the lungs. Ryan’s numbers look good at this point, but should she see any change resulting from the collaterals, she will order cardiac catheterization tests to explore if anything needs to be done pre-Glenn surrounding the collaterals and pulmonary stenosis. For now, nothing will be done.
Each heart baby has their own unique heart. While there are set congenital heart defects, some children fit the textbook case and some don’t. Ryan’s heart is showing some resemblance of Tetralogy of Fallot (Tetralogy) in that he has a Ventricular Septal Defect (VSD) and pulmonary stenosis. While to be classified as having Tetralogy you need to display three of the four components, the cardiologist will still look for symptoms on Ryan since he has two of the four.
Because the cardiologists on the case are waiting several months, the plastic surgeon and general surgeon are forming a plan for dealing with the ectopia cordis and oomphalocele. They will need to enclose his stomach and reconstruct his chest wall to create a cavity for his heart. They will likely try to do this around 6-8 weeks of age. To prepare for that surgery, they will utilize tissue expanders, which have never been done on a one week old before so we are in uncharted waters. They will likely start this next week and see how Ryan’s body reacts. As with other things, Ryan continues to push the limits of the known science. Hopefully, this will work and blaze a path for other kids that come behind him. Once his tissue is stretched, they will form a protective layer consisting of muscle and skin for the heart. They will wait to create bone structure, as the surgeon would have to break it to do the Glenn procedure. They will simply wait to place that bone during the Glenn.
As far as his current condition, Ryan is holding up well. They removed his breathing tube on Tuesday to see how well he could breathe on his own. His ventilator was on its lowest setting and his numbers were good, so they felt taking the ‘training wheels’ off was a step in the right direction.
Ryan worked very hard to sustain life on his own; however, he is not ready to go without the ventilator completely. He was on own for about 8 hours and in that time his oxygenation levels dropped (even with supplemental oxygen) and his heart was working in overdrive. The doctors felt it was best not to stress his body. The tube was replaced around 10 p.m. This was disappointing for us as we were hopeful he was strong enough to breathe on his own. However, the good news is that he is stronger than he was at birth, and the hope is he will continue to grow and get stronger in the days to come; enough that the breathing tube won’t be necessary.
Comments (10)
Thank you so much for the update! You and your family bring me so much inspiration. God is with you and baby Ryan through all of this!
*hugs* and much love!
Thanks for the update, many prayers still coming your way.
Gustavi
Thank you for the update. I am praying for Ryan daily. We love you all.
Leighann – so….how soon til you get your medical degree? I don’t know how you are keeping up with it all. Will be praying that your mind stays clear as you must listen and process all the info.
praying for you all. ryan is precious…what a big boy! 😉
Hey Leighann (and Henry occasionally),
Thanks for updating– My friends and I have been praying for you guys. I just wanted to let you know that I know of several people who have been blessed by reading your blog. So thanks for letting God use you in that way. I love you.
well, at least the surgeries can be pushed back until ryan is bigger and stronger. AND at least there are doctors who have and idea of what to do in a case like this. God is good and we are so glad ryan is a part of the family. can’t wait to meet the little guy!
Thanks for the update. It is amazing how you are able to articulate this information so well to us and I can even understand it! That is a miracle in itself. I continue to pray daily for you all. Have you been able to see your girls yet?
Sounds really positive that he will be able to hold off on the heart surgery a few months! We will be praying for the surgery to enclose the heart and stomach. Also, that the skin procedure would work great!
I’m glad to hear that he is defying science!
We are eager to hear how you and Ryan are doing each day. We are so thankful for his safe birth. Our prayers and thoughts are with you!
Having been a tet baby and having a tet baby as we talked about (although no where near as serious as Ryan) I am praying that the repair when done, goes as smoothly as possible. I know Ryan is blazing the trail, my heart is going ou to you, and I know God will continue to give you, Henry and Ryan the strength to persrevere.