Ryan came through his cath and got back to his room a little after one o’clock. It was a loonngg morning! Dr. K gave me the update on what he saw inside and it’s not a pretty picture. But then, Ryan’s never really taken a pretty picture when it comes to his heart.
Preliminarily, without having talk to Ryan’s main cardiologist, here is what I understand at this point:
1. Ryan is getting to a big boy and his shunt is ‘small’: reading between the lines, I’m guessing Dr. K thinks Ryan has outgrown or is outgrowing his shunt maybe explaining why he is having a hard time keeping his sats elevated. The Glenn is on the horizon so that will fix that problem.
2. Ryan’s pulmonary arteries have not grown since April, probably because his shunt is not giving great blood flow due to his body growth. That is okay since they are within a range to make Ryan a candidate for the Glenn.
3. Ryan’s right PA is smaller than his left PA, most likely due to the fact that the shunt is connected from the aorta to the left PA making blood flow more prominent on the left side.
4. Ryan’s right lung doesn’t seem to be as strong as his left lung. This could be because the blood flow is different, or could be the way his body came to us. If you remember, his right lung collapsed when they tried extubating him shortly after birth. It might just be more compromised no matter what.
5. While his right lung is weaker, the oxygen pressure in the left and right lungs is relatively equal. Normal and healthy is 500; Ryan is measuring around 350. This too is okay, but not ideal. (could be much, much worse though – Dr. K has seen as low at 30 so we are thankful it’s not the worst.)
Dr. K’s assessment is that while Ryan is a candidate for the Glenn, it will be a risky Glenn. This reiterates what Dr. D told me a few weeks back in the cardio clinic. Ryan is fragile, no bones about it. If his body thinks life is tricky now, it will think it even more so once we require his PAs and lungs to take on some function of the right ventricle. However, everyone I talk to feels it is reasonable to proceed with the Glenn…that is Ryan’s best option and in his best interest.
The best news from today is the cor triatriatum membrane that was choking Ryan’s heart back in April is reading at a gradient of 2. A perfect reading to be left alone at this point. Dr. J (the cardiac surgeon) is not required to be in the atria during the Glenn and prefers not to mess around in there if it’s not necessary. He does have to be in the atria during the Fontann, so this means he can wait until then to cut out the membrane for good. If the membrane should cause a problem in the next 12-18 months, Dr. K can balloon it again in the cath lab as he did before.
The Plan going forward –
Again, not having spoken with Dr. D this is preliminary, but it seems Ryan will stay intubated for now (which I hate since it also means he’ll be sedated) to give his little body rest. The setting will be low to decrease chance of more damage to his lungs…just enough to take the pressure off for now.
Plastics will come up tomorrow and expand the expanders and will confer with cardiology on how quickly and how often we can get Ryan fully expanded giving us enough skin to perform the Glenn.
The Glenn is scheduled for three weeks from tomorrow. We hope Ryan will tolerate the expansions and will be able to come off the vent before then; however, he may be sitting pretty with the tube until then.
It has been an exhausting day – has it really only been a morning? When Ryan returned from the lab he had a desatting episode that had us all scratching our heads. He is stable again and hopefully will stay that way! For now, that’s all folks!
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Comments (13)
I know you are both tired. Rest, little one & dear Leighann! We are praying.
Praying for you and ryan. We know Ryan’s health and future is in God’s hands. Praying that God will continue to perform miracles in ryan’s life and shock the doctors once again. HE is able!! Love you all.
Praying!
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I wish there was something we could do. It sounds like you have a wonderful family and church that is there for you and you have support. I am so glad for that it truly does make a difference.
I know we are somewhat a good distance apart , but please don’t hesitate to ask us to do anything what ever you guys need we will do our best to do. We will continue to pray as always.
((HUGS))
Kelly K
I wish I was closer to do something for you too! Thanks for such a specific update, we are praying!
thanks for the update, i know you have so much to deal with, and it seems so overwhelming, but you are so good at sorting through the medical jargon and making it make sense to us! (i wish more of my professors were like you). always praying for you guys. <3
Prayer all around – wisdom, gentle and precise hands, rest, peace…whatever you need, praying that you feel how closely God holds you all.
Wow, what a day! Again not much I can say to offer you comfort after what you have been through but I trust the one who is the God of all Great Comfort will giove you the comfort you need and resting peace this night! Ever praying for you all!
Wishing I would have checked your blog before heading to Children’s today! I didn’t realize Ryan’s cath was delayed until today or I would have stopped up to check on you after our appt with Dr. K. Hang in there girl….you guys have really been through the storm and God has been faithful….and will continue to be faithful. Hope you are able to get some rest! Praying for all!
We’re praying for you guys. What a day! As one of your readers said, God is able to do much more than we could ever dream. He is good. We just sang one of my favorite songs at praise team practice tonight: I have a maker. He formed my heart. Before even time began, my life was in His hands. He knows my name. He knows my every thought. He sees each tear that falls and He hears me when I call. For whatever reason, God formed Ryan’s heart exactly like he wanted it. We don’t know why, but He did.
Hugs!
whew that is alot to take in! i’m sure you are happy to have your little guy back in his room, and we’ll be praying for him over the next few days (like we ever really stop, right?)
take care and get some rest!
We continue praying for you all. Please let us know if we can do ANYTHING to help.