We had an appointment today with the general surgeon, Dr. S. He is the doctor who will put Ryan’s omphalocele back in place. It is the first time I’ve met him although I have heard rumor of him since Ryan’s birth.
We talked over the options and he feels since Ryan is tolerating feeds and going to the bathroom (quite well I might add), the bowels are the least of our concerns. We really can put them in at any time.
Ryan has two surgeries coming up – 1) To have skin spacers put in his chest in preparation for 2) the Glenn procedure in August. So, Dr. S talked about the pros and cons of performing his piece of the puzzle during one of those procedures.
The main concern is how the skin covering will react to being cut through, i.e., will it heal properly. Because we are unsure what it will do, Dr. S prefers dealing with the omphalocele during the Glenn. That way, they can cut through everything at the same time and close everything up at the same time.
The second procedure Dr. S will need to do is to give Ryan a prosthetic diaphragm. I think I’ve mentioned before that Ryan’s diaphragm is compromised. Dr. S explained to me today that the diaphragm is a band of muscles between the heart and stomach that support breathing. They believe that Ryan has a hole in the mid-section of his diaphragm. From what they can tell on the outside, Ryan’s stomach and heart are sitting too close together to have an in-tact diaphragm between them. So, he is suggesting he place a prosthetic (made of gortex) there during the first procedure.
I didn’t think to ask him how long a gortex diaphragm lasts. Of course, that was Henry’s first question. I’ll have to remember to ask Dr. S next time we meet with him.
So, that answers our questions about what the plan is going forward….kindof. I still need a date from Dr. B, the plastic surgeon, on when he wants to put the skin spacers in. We are on the cardiac surgery list on Aug. 27 so it’s a matter of counting back 6-8 weeks.
Also Ryan’s nasal congestion seems to be resolving itself. The pediatrician suggested it may be a reaction from his mucus membranes which protect themselves by creating – you guessed it – mucus. So, with his feeding tube being in his nose, his mucus membranes may be lubricating themselves. He’s back to accepting a bottle so I’m assuming he can breathe better.
And, the boy is gaining weight. He weighed in at 10 pounds 6 ounces this week. We are thrilled he is gaining as heart babies have a hard time not losing weight.
(c) 2016 Leighann Marquiss
Comments (9)
wow, lot’s of good information, thanks for sharing and now we know how to keep praying!
Thanks for the update. Always look forward to reading the blog. We love you all and pray for you daily. The girls are always excited to tell thier teachers good news about baby ryan. He has become a household name in many of our school and church families. I am constantly being asked how he is doing. Praise the Lord, He answers prayers.
That sounds like a good visiit and the Dr had wisdom about combining the procedures. We will continue to pray for strength for Ryan’s body until the date gets here! As well as protection form any other illness. Keep up the good work mom!
Yeah, so glad to hear such a good update. Great job Ryan.
Way to go Ryan!!! I always found writing down my questions before my doctor’s appointment had been helpful!
Just a little FYI…”little” Polly wieghed in at a hefty 10 pounds 6 ounces at birth! So glad Ryan is doing well!! I think about u all the time…love ya!
Richelle
Totally random question here, Leighann… any chance you can get a new button with an updated picture of Ryan on it? he has changed so much & I was noticing how different he looks:)
Madeleine just had the surgery to remove the NJ tube (I think Ryan is NG) and we can already see a huge difference in how less runny her nose is. The tube is incredibly agrivating for the whole system and not surprising that snot is increased. Hopefully that’s all it is!
Great to hear the updates!
Kirsten
I’m glad you have a good plan for your little man. Waiting and planning for heart surgery can be hard.
Praying for widsom in decision making and peace for your heart as you wait.
Blessings
Leslie