Over the last few days, several of you asked questions in the comment box. I wanted to answer them and think they will clear up a few things.
Q: DG Darling and The Scherms both asked: “Do you think he will miss (his heart) now?”
A: Although they haven’t taken Ryan’s surgical dressing off yet, I can see a little hump where his heart is that is pumping. Meaning…it’s not really gone. I am curious to see how much hump is left though and hope to find out when they remove the dressing (maybe as early as Friday). However, I do think if it was totally gone, he would miss it. I liken it to a pacifier or as DG Darling called it – his woobie. He has put his hand on his heart since the day he was born (which really freaked me out the first time I saw him do it) and probably in utero. I imagine it will be very different for him the day he can no longer feel it beating.
Q: SuziQCat asked “To put the heart back in the right place, did Ryan have all the proper bones in place?
A: Ryan does not have all the bones he needs. Well, let me rephrase that. He has an incomplete sternum that ends about the place his defect opening started. That is probably one reason his heart is outside his chest (along with his skin not coming together properly). So in that sense he doesn’t have what he needs.
However to clarify, the doctors did not move Ryan’s heart at all. They simply pulled skin over top to protect it from the atmosphere. This is much different from the recent news story of the baby in India with ectopia cordis. The doctors there moved several of his organs to make room for his heart and pushed his heart back inside.
Ryan was born with a membrane covering his heart and bowels, but it wasn’t proper skin and the plastic surgeon was skeptical it would heal sufficiently should it be punctured in any way, including for heart surgery. Therefore, he developed the idea of expanding Ryan’s own skin to pull over the heart long-term. They surgically removed that membrane during the anatomical repair yesterday.
This may lead to the question of if Ryan’s heart is in a ‘bad’ place. I asked the cardiac surgeon that when Ryan was born and he explained that many people’s hearts are low and almost centered (as Ryan’s is) and isn’t necessarily behind the ribcage. So, the placement isn’t the issue, just that nothing is keeping it tucked in nicely. There is talk of placing some sort of protective plate or bone graft during Ryan’s Fontan surgery (still to be scheduled somewhere around the age of 18-24 months).
The thought is that as Ryan grows, his chest will grow around his heart and it will become less noticeable.
Q: Kirsten asked “When do you get to go home?”
A: This is the question we asked immediately after surgery! At this point, it is anybody’s guess. But, we know that Ryan needs to be weaned from his narcotics and from his ventilator. This can be a frustrating process with several considerations. So we don’t know for sure what the time line is, but we know it won’t be a week. Some doctors are estimating three weeks, some five, some won’t give us an answer. We will know more when Ryan is out of pain and we are able to start weaning his sedation (you can’t wean the vent past certain settings on the levels of sedation Ryan is on).
This is a great segue to Johanna’s question. She asked “Will he need to re-learn how to breathe or will it come naturally since he is more normal as far as structure?”
A: We are unsure and won’t know until we are able to wean him further from the vent. One side of the coin says that since he was breathing on his own pre-admission on July 28 he should be able to breathe on his own now. The team chose to leave him on the vent after his Aug. 5 cath to allow his body rest during his expansions. He was not tolerating them well (desatting often and rebounding slower) perhaps due to outgrowing his shunt. Because it was voluntary, we know his breathing mechanism didn’t stop working per se, as much as his shunt disallowed proper oxygenation.
The other side says that since he has been on a vent for so long (five weeks now), his diaphragm most likely atrophied (only takes a few days in an adult) and will have to go through training as he did at birth. We just won’t know until we try.
Incidentally, Johanna is my older sister whom I love dearly. She has five beautiful children and is a wonderful mother and sister. She has the greatest giggle and is funny as all get out.
Q: Sara asked “Do you ever wonder if our docs realize how much they are prayed for?
A: I think this was a rhetorical question, but I want to answer it anyway…
I highly doubt it! Henry and I don’t even realize how many prayers are being prayed for us so I can’t imagine the doctors know. However, one thing I do know is that God answers prayer whether the person being prayed for knows. I rest assured that HE has Ryan’s best interest in mind. That is where I draw my strength from.
Have a question? Put it in the comments section and I’ll answer it in a follow-up post. Or, you can email me by clicking on the link in the navigational bar.
(c) 2016 Leighann Marquiss
Comments (13)
AAAWWWW!!! Johanna….she does have great kids and they are incredibly smart!! AND your right, she is SO funny….I miss her!
Thanks! for the answers to the “hmmms” going on inside my head! Still praying for all of you.
I think the thing that has actually been resting on my mind with all of this is that… this blog is going to be SUCH a blessing to him when he is older! He will be able to read and see how VERY MUCH HE IS LOVED! By his family of course, those of us who know you and those who only know him and you from inside their computers.
For better or for worse, this will be so much more meaningful then any words we can tell him would be. You all would never remember ALL of the miriad of feelings you have had through all of this, nor all of the fun little things that have happened… the funny quotes and thoughts of his sisters, and your humor Leighann would have be somewhat lost in the retelling.
The fact that you maintained your wonderful humor through all of this will be a great lesson for all the Hobbits.
Love you guys, Jennifer
ps, if you’re ever looking for a blog post idea, I think you need to have a contest to see who comes up with funniest anagram sentence for the word verification thingie…
This
Henry
Inspires
Neverending
God’s
Incessant
Exaltion
Forgot to put my name….Marmi
I think you should earn some type of honorary medical degree after all this. You know a lot that boys little anatomy. Mind boggling really.
I am glad u post these answers, as I sometimes wonder the same things and don’t ask. My mom and I were just discussing about his sternum, etc. the other night. Good to know. I hope time in the hospital goes quickly and you can get your precious family all under one roof again. Love ya!
Richelle
WOW!! Can you say “blogtime”. I feel so special. Love you too, Leighann.
Thank you for answering the questions. I agree with another poster that you should recieve an honorary degree when this is all done.
Mom and I were talking about Ryan today. We said that in just 6 short months of life, he has affected so many people (for good). A lot of people come up to me in church and ask about him and mention they have been praying for him. They have never read your blog. I am sure their are others like that plus the 8900 people that read it last week. He is being used by God to show us God’s power. It always amazes me to read the comment section and see how many people care about one sweet little boy. (maybe I am partial)
Well me and my sweet children pray for Ryan everyday. We love him and you very much.
Maybe its because I’m in school but I’m curious if you and Henry are being guided on helping Ryan develop since he can’t be on his belly or has this been put on the second step because of his situation?
God is amazing in taking care of this boy, you all are such a strong inspiration to me!
There are LOTS of people praying for y’all. A whole lot.
I am so glad to read about Ryan’s successful surgery!
I was also wondering about his development, especially since you said that the doctors would be looking into giving him an implant or doing a bone graft at 18-24 months. At what point do they anticipate that he’ll be crawling, walking, etc, and would he use a chest plate until the Fontan? I know that probably seems very far off!
Praying for your little blessing!
I wanted to say “Hi” and let you know that I am praying for you and your family! Your precious little guy is so strong and tough, he has endured so much in his short little life. I pray that he continues to do well so that he may come home and be with his family!!
He IS a an amazing baby and our God is an amazing God to have answered so many prayers for your sweet Ryan. I do have one question. How are YOU? I know that Ryan is in wonderful hands and we are all praying, but how is his Mommy?