Last night, Gabe was restless.
I think yesterday was the first day he started to feel more like himself and sitting in bed most of the day must have built up an energy reserve. At midnight, he was still singing away on the other side of the curtain. I finally was able to get him to bed around one. Just in time for the first round of nighttime respiratory therapy and vital checks.
I've pretty much come to terms with the fact that I won't be getting more than an hour or two of sleep at a time. And I thought I escaped that newborn, up all night, junk.
I hate that they are waking him up for breathing treatments and respiratory therapy (where they beat on his back in hopes of moving the build up fluids around). It's a horrible way to be woken up and, while he will tolerate it during the day, he screams at night. It sucks.
At 4 we had to go down for labs and his chest X-ray.
Andrew was off again today so he was able to help me stumble down the hall. So, so tired. By the time we got back to the room, Gabe was wide awake. I convinced him to watch cartoons so Andrew and I could sleep for a couple more hours.
Gabe is still throwing up all his meds.
We decided to space them out this morning in hopes of pinpointing which med is making him sick. So instead of one puke, we got 5. All before 8 am.
It's awful to force meds into him knowing he will most likely throw them right back up.
We think it's mostly a mental thing now. He sees meds, remembers they made him throw up, and his body throws them up again. Not only is the whole thing traumatic for all of us, it also stinks because we spend a lot of the day trying to get him to eat as much salt as possible to get his sodium back up. Throwing up pretty much makes all that a waste of time.
They ended up deciding to give him the day off of oral meds. Most are for blood pressure and his numbers were looking really good without them. He went all day without throwing up, but after dinner he said his tummy was hurting. Actually he said, "you should've brought that bag!" He made it back to the room, but threw up a lot about 30 minutes later. That was with no meds. So now we aren't sure why he is throwing up. We know he doesn't have an infection.
We are about to try oral meds again, wish me luck.
Around 8, the doctor came for rounds.
I was totally caught off guard when they said they were going to go ahead and take out the last chest tube. So exciting! I figured we had a couple more days so I didn't expect it at all. He had only put our 40 ml overnight which was way below what they needed. They gave him a heavy pain med we started to call everyone to let them know.
40 minutes later, they came in to tell us he had dumped 100 ml of fluids in just half an hour. That means there is still fluid in there so we can't remove the tube just yet. We think all the throwing up, changing clothes, changing sheets, and shuffling him around loosened some of it up. I know it's for the best. Had they pulled the tube and then found this fluid they would have had to put a tube back in. I do not want that at all. It's still hard to get your hopes up and then dashed.
After we recouped from the false alarm, we decided to make the best of the day.
We rested all morning and then had a few visitors. Our good friend Kellie brought Gabe an awesome gift bag and lunch then spent a couple hours playing with him. While she was here a pastor from our awesome church stopped by and then Ella and Curtis came to play and eat dinner with us.
The big excitement of the day was Gabe decided to do some great walking.
Uno the dog came to see if Gabe would take him for a walk. With a little convincing, he decided he would. They ended up taking a really long walk and Gabe did awesome! Then he decided to ride the trike around the halls. He even played in the toy room for a little while. That was a ton of action in an hour!
I'd love to show you pictures, but if you can imagine a wobbly 4 year old who hasn't walked in 6 days, a box collecting chest fluid, a long tube, and 5 heart monitor wires you'll know why there isn't photographic proof. Add in a trike and, well, just forget about it.
It wiped him out pretty good and by the time Ella and Curtis got here, he was pretty much done. We tried to get him to take a walk outside, but he was exhausted. You could just see in his face that he was ready to sit for a bit. He is still recovering and we are very proud of what action he did have today.
Unfortunately, all that activity has him hurting tonight.
After being pain med free for a couple of days now, we decided to give him some morphine to help him sleep without pain. He hadn't complained about the chest tube bothering him until tonight. He was grimacing it hurt so much. They just started his IV and I expect him to be out in a matter of minutes. I'm sure I won't sleep since it freaks me out to have him on such a heavy drug. The hallucinations he had in ICU make me gun shy to give them again, but if it allows him a steady nights sleep I think it's for the best tonight.
Andrew has to go back to work tomorrow so he left earlier tonight for home.
I cannot wait until all three of us get to head back.
For now, here is an updated list of what we are hoping to have happen.
The throwing up is still at the top of the list. It is so awful to see him throwing up so frequently. Especially knowing what it does to the rest of the work we are trying to do. He has to be able to tolerate oral meds and get his sodium levels up before we can go home. The throwing up could really mess that up.
We are hopeful that the chest tube can come out tomorrow. It's tricky since we also want the chest drainage to be totally done. I'm OK leaving it if it isn't done, but I am praying we are close.
We need a good night of sleep. I've requested to delay the respiratory therapy until the morning. Not sure they can, but if they do, we could actually go a whole night like we were able to the first few nights. The nurses are usually able to sneak in to get vitals without waking him.
Pray that the morphine would settle well with Gabe. I hate seeing him in pain and I hate seeing him on pain meds, but that just seems to be the deal right now.
Pray for Andrew. Going to work while your son is still in the hospital is not easy. We are so thankful for all the time off he was able to take. It's been great having him here. That extra set of hands is incredibly valuable. Not to mention the hugs he doles out. I miss him and Josie so much. Ready for our family to be all together again.