So I have been needing to vent about this surgery for quite some time, but gave it a few more days to see how things progressed. Carter had a tonsillectomy and also had his adenoids removed last Thursday- a week ago. He has been in the hospital ever since- yes, a week. We decided to go forward with this surgery because we heard it helped other 1p36 kids with sleep and not needing oxygen anymore. This was our big hope, because at home Carter will rip out his oxygen and just freak out. I finally got to the point where I said no more, it's not worth it. He isn't on very much, so we stopped putting it on him at night because the fight just wasn't worth it. So we decided since we weren't putting the oxygen on him, that we better do something. The ENT doctor made it sound like surgery was the only other option. We picked a day that worked for us, especially since Chris was home from work for a bit and could be there to help. We knew Carter would have to stay one night, but 7 so far??
Carter has had anaesthesia a few times before, and usually woke up fine within a few hours and a little cranky but not bad. Well, I guess as soon as he started coming to following the surgery, he kept crying, holding his breath and was turning completely blue. He does these breath holding spells at home occasionally, but it sounded pretty bad. The nurses were all pretty scared so they sent him to the PICU for further care and observation. Usually the parent can go see the child pretty soon after surgery in the recovery room and then follows them to their assigned room. Well, we weren't able to see him for an hour or so and then it was in the PICU. They are able to give a higher flow of oxygen there, as well as more personal care. He looked pretty beat up when we saw him, his lips were swollen and bloody in the corners. So what has happened since? Well, Carter was in the PICU, with one night on a bi-pat machine, until Monday morning when they transferred him upstairs onto the floor. After 2 days there, they worried about his work of breathing and tiring out, so they sent him back to the PICU for another night. Today he was sent back up to the third floor, but nothing is really progressing.
Carter has pretty much been asleep 24/7 since the surgery- he will wake up time to time but not very long. His work of breathing looks better not as fast, but he still seems to need some oxygen to keep his stats up. My frustrations have mounted over this week because no one has any idea what is wrong, why he is taking so long to recover, why he is so sleepy, and on and on. I have liked being in the PICU because the nurses are really there the entire time, their patient load is usually just 1 or 2 patients, and they seem to position him better, suction him when needed, and overall take great care of him. On the floor, the nurses only come in if he needs to be fed, changed or medications. I have been frustrated because we are constantly asked the same questions over and over; Carter has been the same for days and isn't progressing or necessarily getting worse, and we are just plain sick and tired of being at the hospital. Fortunately, we do go home at night to sleep, but being pregnant is always a laughing game when it comes to sleep anyway. I am going crazy being there 12 hours a day. We have taken some breaks here and there, but I don't even feel like going up anymore unless he is coming home. I'm not helping any, the nurses are there to take care of him.
His x rays have showed some fluid, which at first they thought was pneumonia. Now they think it's post obstructive edema, meaning his lungs reacted to the surgery by filling up with fluid. They have given him stuff to help flush that fluid out, but unfortunately, since the surgery was in his throat, he can't handle the new secretions that are there. They have to suction him to help him clear his airway. This really makes him mad, as I'm sure it would anyone. It's just been really hard to see Carter suffer, when we thought this would be something helpful to him. We thought it would help him sleep better, not need oxygen, and overall have more room in his airway. But if anything, everything looks so much worse. The swelling should be down by now, it has been a week. I just don't get what is going on. I want to come home, even if we have to do oxygen at home, but the nurses seem to being careful. It's just a long waiting game, and is starting to remind me of his time in the NICU as a newborn. Super stressful and frustrating. I feel like as a parent we should have some say in his care, which we do have some, but it seems like nothing is happening. Even if we came home with oxygen I know Carter is just going to rip it out constantly. Tonight up on the floor he seemed to be waking up more, and was back to his crying spells, freaking out and not wanting to be touched. It's so frustrating to not be able to help your child or touch them.
I just feel like we made a horrible decision by doing this....I don't know if it will pay off one day, but I am sure super frustrated. I have lost my patience with all the different nurses and all their questions, which are the same day in day out. I am tired of eating cafeteria food, of driving up there everyday, of not seeing the sunlight.....I could go on and on. (my parents did take over for me last evening so I could go home and get things done, and we've run some errands but I hate feeling trapped.) I know there are worse things out there, much worse, but I sure don't feel positive at all right now. We have been up at the hospital the last 3 months in a row for almost a week each time, each month. So you can see why I'm starting to hate this place. It's just funny how doctors don't really ever have the answers, especially when it comes to a complicated kid like Carter. People tell me to be positive, but they have no idea what it's like. All these things we have been doing have been to help Carter and his quality of life-- but sometimes it feels like it really sucks everything out of me. I had to vent, I hope it makes me feel better after, just a little. Hopefully we can come home soon, and without any oxygen. And I also hope Carter's mysterious crying fits/blue spells and not wanting to be held go away. We need answers.