A rocky road home
Our visit to CHOP was quite productive. We had a wonderful time exploring Philadelphia and meeting with our care team. Dr. Rychik, Katie, and Dr. Spray were all very encouraged by Paul’s echo cardiogram and his general clinic status. They explained that Paul’s status is about average in terms of what they see with HLHS children who have had a Sano conduit like Paul. His function is still depressed though they think it looks even better than the last echo we did with Dr. Parra. His saturations, while lower did not seem concerning to them and his regurgitation looks ok. We did the MRI on Friday and do not have the official reading from it just yet- we are praying for good results and will know more next week. The initial glance at it looks pretty good. There are some collateral vessels and the regurgitation and function depression are there; we are just not sure to what degree this all measures. We spoke about having the Fontan a year from now. Our family will likely move to Philadelphia temporarily from Aprilish to Augustish this coming year. They suggested we work on tube weaning and development for Paul until then.
A lot of HLHS babies that are Glenns travel with oxygen on the plane. Paul needed a little bit on the way up which was no big deal. On the way home, however, he needed some again once we hit about 20,000 feet. This time, he would not let us give him the oxygen- he fought with every ounce of his being against it. I will spare you the details but as we hung at 40,000 feet he was struggling to breathe and we were very very afraid. We got some help from medical folks on the plane and were able to use the plane’s oxygen mask to deliver O2 to Paul. It was, by far, one of the scariest moments I have ever had as a parent. Once we landed, he seemed to be doing ok. We met paramedics in the Nashville airport who cleared him to go home.
Saturday night Paul had lots of “tummy” trouble that continued into Sunday morning. We spent Sunday at Vanderbilt Children’s for monitoring. We had lots of visitors that assured us that we did everything we could on the plane, he was suffering from a GI bug, and he was ok to go home. It was a relief to be there and have other eyes on him. We got home last night and all crashed out. We pray he is on the mend now. Needless to say, we are all tired and scared but this is parenthood! I recently read a blog on the website of Sisters by Heart. It is from a psychologist that talked about parenting a child with special needs. The premise of her post was that in any child and parent relationship the parent must rally forth and have the strength to sit with her child in their pain- no matter the pain. She writes to be conscious of “this parent. this child, this moment.” I kept repeating that on the plane in my head and will continue to do so as we walk this path with Paul. This parent. this child, this moment. Here’s to a lifetime of moments with more happy than sad, more calm than anxious, and more healing than hurt.