Ryan is not getting better. You know the saying, three steps forward, two steps back. Well, it seems we are in the two step back stage. Since coming in two and a half weeks ago for surgery, he is not back to his baseline sats and has had several episodes of desatting for no apparent reason.
We don’t know if these episodes are new. He could be doing it at home, and since we don’t have monitors at home we just don’t know it’s happening. We do know he wasn’t doing it when they released him at two months old and we know he didn’t do it when he was here for five days in May (three months old). So, we are treating it as a new thing.
Because it is new and because it could indicate a problem, Ryan is being looked at by a few other departments. Neurology came and visited as did pulmonary (lungs). The issue could be one of several things.
Sleep Apnea – He could have sleep apnea. Pulmonary would typically do a sleep test, but there is a strap that goes across the patient’s chest so Ryan is not able to have that test done until his anatomy is fixed. They are playing around with positioning to see if that might help. You see, one of the causes of sleep apnea can be obstructions and well, Ryan has quite the double chin. We are now positioning him so that his chin is not placing pressure on his trachea. Hopefully this will help. His episodes have calmed a bit since the repositioning tactics, but who knows if this will remain the answer.
Shunt – He could be outgrowing his shunt. This might be causing incorrect blood flow and result in decreased O2 sats. To figure this out, he will have to have a heart catheterization. This is fine since he has to have his pulmonary arteries measured before the Glenn surgery anyway. They are considering doing this in about two weeks.
Tissue Expanders – The tissue expanders could be causing issues with Ryan’s breathing. Our original thought is the tissue expanders are putting pressure on the very muscles Ryan uses to breathe, tiring him out or causing him not to breathe as deeply. This is just as likely as the other theories although in other children without compromised structures it hasn’t been seen before. The plan going forward is to inject the saline twice a week depending on how Ryan is doing day-to-day. If he is having a rough day (sats sitting low or desatting episode(s) ), the cardiologists will tell plastics to wait another 24-48 hours. He already missed one expansion this week. There are definite ramifications to this plan that I’m trying to wrap my emotions around.
The result is that Ryan’s skin will not be expanded as quickly as we thought. And, the Glenn will not be done until there is enough skin to pull over the heart. If Ryan outgrows his shunt before he has enough skin (which we will know more about in a few weeks), he will need to have a replacement shunt. I really, really, really hate the idea of having another heart surgery that isn’t the Glenn. But, I understand why we need that skin. I understand Ryan is at risk for major infection if his heart is not covered. The Glenn is scheduled for August 27, but that date is likely to change.
So, now it’s a waiting game that will continue to change as often as Ryan’s stability does. For now, we know he will be in the hospital for at least another two weeks-ish.
Comments (12)
((((HUGS))))) Thanks for sharing this information so I know what to specifically be praying for. May God give you and the doctors wisdom as to what to do!!!! And we are praying for your emotions as well… that is really important…
Praying that God gives all of you much peace…I’m sure this is a lot to digest for all of you – how wonderful to remember God’s sufficient grace! And, yes, Mr. Ryan does have quite the double chin 🙂
Remembering you often in prayer!
We will be praying for Ryan and the rest of your beautiful family…
good luck to your family and Ryan. 🙁 Hope he will be doing well after all these. 🙁
yes, thanks for the details…we are praying!
Leighann, My husband and I have been praying for Ryan. I am sorry to hear that things are not quite where you want them to be, and that there have been some setbacks. I know this must be so hard for you.
It is hard to have to be in the hospital for so long, and I know you can grow weary pretty fast in that place. (Even when staff and doctors are nice,..and caring people,…it is still hard). So, we will keep praying for you all Leighann. Keep your chin up and just take one day at a time,…hold on to your faith.
Yes,hold tightly to the Lord,…He is your strength…and your peace.
Place a kiss for me on that sweet baby’s face. ((hugs for you))
Love & Prayers,
Linda @ Truthful Tidbits
Praying for Ryan, you, and the rest of the family. I hope His grace is overwhelming and He gives you that peace that passeth all understanding today!
My heart is sad for you guys… I hate steps backward for you guys! I just know that God is still in control! I am praying.
Praying for guys, I cannot imagine the agony you are in.
(friend of Courtney C.)
Bless you, each of you, with a spirit of peace. And for the docs, tender hands and very sharp minds and intuition.
Praying that God gives you all the peace needed at this time. I know this is alot to figure out, as you are doing keep trusting in our wonderful Lord! Praying for you and baby Ryan.
Your family is in our prayers daily!!
I am praying for wisdom for the docs and peace for you guys! I think about you and your little guy often. God is in control and His timing is perfect.