So, in mid July Ryan flew to New Jersey for a two week training for work. I was home alone with the G Man. The first Friday Ryan was gone Gavin woke up crying an unusual cry, then proceeded to turn a very odd shade of maroon, then stopped breathing. He snapped out of it, and I assumed he was pushing down on a major vein, which is called a vagal response. Well, Saturday night rolled around and the same thing happened, but much worse. Clearly something was very wrong. I called Seattle Children's in the morning and they sent an ambulance to take us to Children's since I was home alone. The EMT's arrived and when they put Gavin in his carseat on the gurney he quit breathing again and actually needed to have CPR performed for about 5 minutes. It was terrible. I am very thankful that I stay calm in chaos because I was able to think fast. So the ambulance ride went from non-emergent to very emergent. We arrived at Children's and we went from the E.R. to the PICU, and we stayed in the PICU for some time. Nobody could really get a good idea about what was going on, and Gavin's surgeon was out of town. When he got back he instantly figured out what was wrong, and after some tests to confirm it, he discovered that Gavin had an artery laying over his airway that was causing compression. The condition is called tracheamalacia. So when Gavin would get upset and cry, the artery would clamp down and his airway would close off. The good news is that Gavin's surgeon could fix this by suturing Gavin's aorta to his breast plate. Had he just had a floppy airway, which was the original concern, we were staring into the eyes of a tracheostomy. Not good. Not good at all. I am not telling this story to scare people, but to let other parents of O babies who stumble across this blog know about tracheamalacia because O babies are at a higher risk for having this. I had no idea!
Gavin had surgery on August 1st, and it went very well. His surgeon was very happy with the outcome, and he would know since his dad wrote the textbook on the procedure! The plan was to take him off of the ventilator the next morning and then go home in about a week. WELL, as always, Gavin had a different plan. At 5:00AM the vent started alarming because Gavin was breathing very fast and his heart rate was through the roof. He was also very swollen. He was retaining quite a bit of fluid post surgery, and actually had fluid in his chest cavity around his left lung. This is somewhat common after surgery, but Gavin's lungs are already small, so he doesn't have the reserve to battle this kind of thing. Also, he had a urinary tract infection! Gavin remained on the ventilator for 15 days after that, and if it wasn't for an amazing PICU attending (Dr. Brogan), he likely would have been on the ventilator longer. After he was extubated he was doing great and we went to the floor. BUT, then he got another urinary tract infection, so back to the PICU we went. We were there for three weeks while they tried to figure out what Gavin needed. Unfortunately Gavin is hooked on narcotics and also got used to having diuretics. So, when he doesn't have diuretics, he retains fluid which makes breathing a little more challenging for him.
Where are we now? On the floor, trying to get him to a good spot with his fluid balance, and then hopefully get him off of high flow oxygen. The FDA doesn't allow kids to go home on high flow, so we need to be off of that to get home. The hope, and most likely scenario, is that once he gets his fluid balance to a good spot he should come off of high flow. Then we will go home and let him grow out of his diuretic dose and also finish his narcotic wean. Let me tell you: a baby going through withdrawals is the most emotionally draining thing you can ever experience. They sweat, cry and twitch. It is horrible to see our normally happy little guy do that. So sad. But he is getting better and he has been smiling and flirting with the nurses like his old self more often.
It is so funny to think that Gavin's omphalocele is such a non issue. It is almost fully covered in skin, and it is much smaller. Well, it is smaller when he isn't swollen from retaining fluid! The plan is to do surgery sometime after the viral season has ended. I often wonder if this will really be the end of this chapter for us. It is hard to imagine since we have had six months of medical complications. I think I am just so used to this life that it might be hard to imagine not having this stuff going on.
People continue to amaze us. Having a medically complicated baby brings out the worst and the best in people. Some people who we thought would be supportive have vanished. But others have shown a side of themselves we have never seen. For instance our next door neighbor is paying their lawn service to mow our lawn. Another great example is a great friend I made on the Moo's website brought me lunch and visited with me today. When I have a down day (like the last couple of days after the nanny I had lined up dropped a bomb on me that she couldn't watch Gavin....a week before my next quarter of school started), I remind myself that at some point this is all going to be history for us and then Ryan, Gavin and I can have the chance to go out and do stuff like that for others. This has been such a great lesson in how we want our family dynamic to be moving forward.
Well...hoping to be home before Halloween!!! I might have a good costume planned. :)
