I know it's been a long time since I updated the blog (I've been reminded of this NUMEROUS times), but, in my defense, I've had a couple of things to worry about since October 17th.
Briefly, here's how things went after that. Mason seemed to do a turn-around after they put in the 4th chest tube to try to drain fluids away from his lungs, making it much easier for him to breathe and for his heart to pump. I had a really hard time when they did that procedure because it was the first time that we had to leave Mason alone; I had been adamant that any time I had to leave him, some family member would be with him. Chris made me go across the street to get lunch with him, and that was the first time I had seen daylight since Tuesday afternoon. It was shocking to see that life was going on as normal, ignorant of Mason's struggle in the PCICU. I know that sounds ridiculous, but it was really difficult for me to maintain a sense of reality holed up in his room with room almost 24 hours a day. The chest tube immediately drained almost 2 ounces of fluid, and his stats started to creep up, and from that point on we saw many more gains than losses. He was fighting to breathe on his own, despite the ventilator, and he wiggled in earnest against the paralytic drugs. At that point the toughest times for me were when he coughed. I can't even explain why, but it was horrifying to see.
By Monday morning all the chest tubes had been removed, and Mason had come off the ventilator. We were just waiting for a room to open up on the floor, and Mason stayed awake for long periods, so we continued to read his books and talk to him and mark off the hours until he was well enough to go home. A couple of times a resident or doctor would pop in just to say "hi," even though they weren't assigned to him...they had just heard how cute he was and how miraculously he was recovering all of a sudden. On Tuesday afternoon, a few of them came in, and Mason smiled! They all cheered, and the resident said, "After all the junk that has happened today, THAT just made my day!" I can't express how helpful it was to know that everyone in the PCICU was behind Mason, celebrating every milestone along with us. We were truly blessed to have such gifted people caring for our son.
Having said that, I was not prepared AT ALL for the difference between the floor and the PCICU, so I really struggled once we were moved out of the PCICU on Tuesday night. I won't go into too many details, but it was a terrible experience for the most part, and I never thought I'd have any complaints about Vanderbilt. Mason was just another patient up there on the floor, and they were not too forthcoming with information. I couldn't sleep at night because people kept coming in every 15-30 minutes during the night, and I had to do all the normal mommy things on top of that (diapering, feeding, cleaning, etc.), so I was trying to function on pretty much no sleep. It was terrible, and I couldn't have done it without my mom's being there during the day. On Wednesday Chris had gone back to work. By Thursday afternoon, I was at the end of what I could handle, so I called Chris and asked him to stay with us on Friday. He did, and we ended up getting to go home Friday evening.
I've never been so excited to see home! We were both so scared to take him home, though. We had spent the last 10 days watching his heart and oxygen monitors obsessively, so it was terrifying not to have that reassurance that he was okay. We've been home now almost 3 weeks, and I'm finally relaxing a little. The first two weeks were exhausting because Mason couldn't do the things he was doing before (like playing in his jumparoo or having tummy time on his play mat)that allowed me to get things done. I held him almost all day, and even though there is nothing I love more than being with him, so many days of having to wait until Chris home to do even the simplest task (like showering) eventually wore on me.
Thankfully, Mason is gradually getting back to normal, so the clinginess he showed after surgery is improving. On the other hand, though, he's going through the separation anxiety stage way early; he decided about a week ago that he only likes his parents. Even Mom, who kept him every day before the surgery and stayed by his side during the whole hospital stay, made him scream every time she tried to hold him. She had gone home for almost a week, and it took her two days when she returned last week to regain his trust. I hope we grow out of this fast. We were really worried about how much he would regress developmentally because Dr. Kaushik had warned us that most kids lose some milestones after surgery. So far, though, we haven't noticed anything other than the decrease in independence. He's the smiley Mason we all remember, he's up to about 5 ounces at every feeding now (getting even 3 was a fight for a few weeks), and he talks all the time. Every once in a while he'll even try to imitate sounds. Last weekend he started working on holding his own bottle while he eats, and he seems to have mastered that skill rather quickly. He held it through a whole feeding this morning! Sigh...I think that's it. You're all up to date now.
