Well, today we had our last Interstage appointment before Owen has his Glenn surgery on August 28th, provided that there are no medical emergencies. Owen is still doing well. Everything looks great, his blood pressures are good (they check on his leg and on his arm), his blood oxygenation levels are still good, and he is still gaining weight and meeting his maintenance goals every day. They decided today to cut back on his dose of Captopril, actually to halve his dose because his oxygenation levels have been coming down, they still aren't anything to worry about, but there has been a steady decline recently. They also decided to increase his dose of Ranitidine (the medication for reflux), they found one article stating that there might be a link between reflux and sleep eating in babies (Owen still only eats when he is a sleep which gets very stressful during the day, it is the rare occasion when Owen is actually awake and sucking on the bottle, usually when he wakes up already sucking on the bottle). At the end of Owen's appointment, we were talking with Dr. Afolter and he said that Owen will be the oldest Glenn baby that they have operated on in a long time, with most babies in Owen's condition it becomes necessary to perform the Glenn at a younger age. Only a few short days after Owen's surgery he will be five months old. It is amazing to think of how far we have come. It has been a long road and we have learned a lot along the way, but that road is still longer yet. I think we will be happy to reach that next mile marker along the road, it will mean some big changes at home. After Owen's Glenn we won't need to weigh him every morning and his fluid intake won't be of such a big concern. I think the hardest part of his recovery will be that we won't be able to hold him all of the time like we do now and a lot of things that we do to comfort him we won't be able to do anymore. It will be hard but it will be a great relief to have the Glenn out of the way.
I've been following from the beginning. I am so happy Owen is doing as well as he is. I wanted to share an article I found. It just demonstrates how far medicine as come and how much of a "normal" life some one with a CHD can lead. Best Wishes for the upcoming surgery! Here's the link to the article: http://www.gmtoday.com/content/m_magazine/2012/July/m_072012_79.asp
ReplyDeleteThis is a very heartwarming article!
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