Birthday Week Part 1 (decorations)

"Home"

I have realized that Raul and I have spent more time together on the 8th floor of this hospital than we have anywhere else, even more than in Romania I am guessing. It has become our "home" for now. At this point though I think it is good we are here, because the RMH is dealing with some bugs going around, and everything is closed down other than the bedrooms!

Raul is doing better in a lot of ways. He is acting more like himself, playing, and laughing again. However, now that they stopped his scheduled tylenol he is back to having fevers. He is also still having a lot of trouble tolerating his feeds. He vomits sometimes, but mostly violently retches. It is sad when he retches because he has trouble breathing, and it really scares him, so then he cries a lot after. We are going to try switching him to another formula to see if he will tolerate it better. We have also discussed the possibility of switching his G-tube to a GJ tube if he really just isn't tolerating the formula in his stomach.

Yesterday he had x-rays of both knees and ankles. We had been discussing the possibility of a bone infection since early in his last stay, but had held off on doing imaging as he didn't seem to have lots of bone pain or other symptoms. But yesterday on his x-rays his right ankle/heel looked "suspicious", which is the area we had been concerned about since the beginning. They are discussing now what to do for it, but if they treat it as a bone infection he will likely have to take antibiotics for months. From what I've read it seems like they usually start treatment with IV antibiotics, but since they hate putting lines in him, we'll see if they just stay with oral instead.

Friday

We are out of the ICU now, and back up on the 8th floor. The last two days were really hard for Raul, but he is starting to improve. This morning we were able to turn off his oxygen, as his sats are now good on room air. He is also awake and alert today, unlike yesterday where he just slept and was hard to wake. He's definitely still tired and cranky, but he is fighting whatever this is! We don't actually know what it is that he is fighting, but he is on three antibiotics (two IV) and also medicine to help control his fevers. He is still having pretty high temperatures though despite all that. At his bath today he had one area of skin that looked infected, but I'm not sure it looked bad enough to have made him this sick, and it also wasn't there when I brought him in. They checked for pneumonia because of his oxygen, and it wasn't that, and so far his blood cultures have been normal too. He's kind of a mystery! But for now we are resting comfortably back on the floor!

I only got two pictures in the ICU, as he was just too sick to bug!

RMH Playroom

These were taken just a couple days before Raul ended up in the ICU

PICU

Last night Raul was admitted to the PICU by way of the ER. He had been acting lethargic, having high fevers, and being very irritable. We got to the ER around 7:30, and didn't get to our room until 4:30 this morning, but they did get an IV in this time! He is getting a bunch of IV antibiotics until his cultures come back and we know what infection he has. I am really hoping to get back to the regular floor soon, as things are much busier down here. I will update as I know anything!

My Little Chub

We went to the doctor today, and Raul now weighs just over 20 pounds!! He gained one pound in the last six days, and five in the five weeks he has had his g-tube! I love his new chub! The other good news: his blood work was normal! CRP lower, normal white count, not anemic! They got the blood on the second stick, which for him is pretty amazing. He screamed, but not as bad as in the past, as he was watching Mickey Mouse on the TV. Aside from the obvious fact that he is clinically healthier, the other good news is that we can now start his vaccinations. He got two shots today, as well as the nasal flu vaccine. We are just going to go slowly until he is totally caught up. We are also upping the dose of one of his pre-bath meds., as he freaked out so much last time, so hopefully it will go a bit better now! He is still having fevers, which is mysterious since his counts are so good, so we are just watching it for now. We also saw Robin, Raul's inpatient speech therapist again while waiting in the lobby after his appointment (hi, Robin!).

I have been slowly feeling better, and am now doing pretty well. My mom left today to head back to Boston, and will be back in about ten days for her already scheduled visit. She was able to organize all the medical supplies in our room (a big task!), do our shopping and laundry, and take care of Raul for me while I was not feeling well. They even went back to the zoo yesterday while I took a nap! Raul has been sleepy today too, so we've both had a couple naps, but also some good play time! Apparently Raul also likes to go down the slide now, and he really likes the toys in the big playroom!

Sick Part 3

Part 3, and hopefully the last part! My mom arrived yesterday, and we headed over to the ER at Children's. Unfortunately, we weren't lucky enough to get doctors/nurses that understood my medical problems, but at least they knew to give IV fluids! I got two liters of fluids, and then they sent me home to try to catch the rest of the way up drinking by mouth. Most of my labs were normal at least, so that was good. The seemed not to understand that we weren't there because I had food poisoning, we were there because of the dehydration and other effects that followed with my underlying conditions. And unfortunately the doctor I saw when I was there last time from metabolics was out of town this week. Also, the ER was PACKED, so that didn't help any!

My mom and Raul walked around some, and also stayed in the room some to watch Raul's favorite movie (Tangled). They saw a cheerleading performance in the lobby, which apparently Raul liked until it got too loud. He also did lots of his usual flirting, and made friends with a couple girls outside. We had issues feeding him though, because his pump/bag decided not to work while we were there. We got him to eat a little yogurt by mouth, and I slowly gravity fed him one feed. The other feed we just added on to his nighttime feed. Luckily with a new bag the pump worked again last night. We were at the hospital for like seven hours, but at least I got the fluids!

We all thought I would rest better at home than staying overnight in observation for more fluids, but unfortunately that seemed not to be the case, as Raul had a hard night with lots of screaming episodes. It seemed like his tummy was gassy, and painful. He is a little happier now playing and watching TV. There was supposed to be free breakfast today, but the people didn't come, so my mom is now going to IHOP to get food for me. Now that I am starting to get an appetite back I am craving strange foods. This meal should take care of those pesky ketones in my body!