September 12th

Sorry I haven't updated in a few days, but things have been busy/stressful here! I will try to pick up where I left off before. They never did image his bones, as a bone infection seems unlikely at this point. His hand starting swelling again (it had done so a few weeks ag0), but luckily this time it didn't get quite as bad. However, since the PICC was in that arm this time, they decided to pull the line, as it had also stopped drawing back blood. This proved to be a problem, as peripheral sticks don't work on him, so we have not been able to culture with any recent fevers. When they pulled his line, they decided to stop all his antibiotics a couple days early since he seemed to be doing well. I had mixed feelings about this given what happened last time his antibiotics ended and his line was pulled. Today they cultured two wounds that had been draining and smelly to see if there are any new skin infections (we kind of expect the same old ones to still be showing up). He has been cranky, and pretty sleepy too. He is borderline for needing another blood transfusion, for which another line would have to be placed. Though it will be hard even to get enough blood to check! We will see what happens in the next few days, I guess...

Developmentally Raul continues to improve! He is now saying "uh oh" and working on a few others. He also started making a dinosaur noise a couple days ago when Child Life gave him two toy dinosaurs, which is super cute. He bangs two toys together, transfers between hands, reaches, puts things in and out of containers, turns pages of books, stands with assistance or while holding onto something, is working on the crawling position, and will often walk his feet forward if you hold him standing. He is just so smart! He figures out toys so quickly, and is getting more persistent with them. When he sees a new toy, you can just see it in his face that he is already trying to figure it all out. Also, he is a big old flirt, and gets everyone to play "fetch" with him (where he throws toys and you have to go get them, and the harder it is for you, the better), dance to his musical toys, talk in "Raul talk", play hide and seek around his crib, and many other silly things! As long as you don't try to make him do something he doesn't want to do, he is pretty happy despite all the medical stuff :)

A Sweet Message From Another EB Mommy

http://randycourtneytripproth.blogspot.com/2011/09/definition-of-hero.html

Week Five Medical Update

We are now into week five of our hospital stay. As you can see from the pictures, my parents visited over the weekend, and we had fun going outside with Raul. Raul loves that he is allowed out now, so I will continue to take him out. Raul's course of antibiotics is supposed to be two weeks, and I think we are about half way through now. He was started on a second antibiotic, but taken off after two days as his cultures were coming back negative. His blood cultures continue to come back negative now, which is great, though he still has a fever and diarrhea. His fevers have gotten lower, but they are still there. His antibiotic schedule has been switched a bunch of times from every 6 hours, to every 4, to continuous, and now back to every 6 hours. They are trying to get the level perfect, but so far it seems to be helping. Though then again, it seemed to work last time, and he had more infections just two days later. Hopefully this time it will really clear everything! We had some excitement with his PICC line over the weekend, where the dressing had come off under his gauze, pulling the line almost all the way out. Luckily, they did an x-ray and while it is no longer a central line, we can still use it as a peripheral line. We narrowly escaped having to get another one! There has also been discussion about getting an MRI of his leg to make sure there is not a bone infection. It was all scheduled for tomorrow, but late in the day today they decided to hold off on doing it for now.

Labor Day

An Exciting Day

Today was an exciting day! Raul got permission to go outside, as long as we went directly out from our room. He was SO happy to be out. We walked through the garden, then sat on a bench to people watch. He loved watching all the other kids, and excitedly talked to some of them. It was so nice to get some sun and fresh air, and a break from our room. The best part was when one of the therapy dogs that visits the hospital came to say hi to him! He starting grinning and shaking with excitement, and even made a kissy face (like how he kisses his stuffed puppy). The doctor has said we can continue to go outside, which is great, as we found out today that we will be here a while longer.

Going Backwards

So earlier this week everyone had been thinking that we would be discharged either today or tomorrow, but unfortunately, that is not the case. Because he had finished his antibiotics and had a negative blood culture, Raul's PICC line was pulled on Monday. I expressed concerns about drawing blood in the future, but the doctors were pretty sure that they would not need anymore blood. Unfortunately, the next night Raul spiked another high fever, and today started having more diarrhea. The night team last night wanted to get two blood cultures and re-start him on IV antibiotics, which would mean putting in a regular IV. The resource nurses were called, and we were able to get one blood culture, but not the second or the IV. So today he was scheduled to get another PICC line places, and that happened this afternoon. Luckily he is doing better with anesthesia these days, and there were no problems, though they said they suctioned out thick secretions again (like after the g-tube). He is now getting his IV antibiotics again, and they drew labs and another culture. He had to be NPO all day waiting for the procedure, so tonight we restarted his g-tube feeds again. He still seems pretty uncomfortable with the feeds, but not in quite as much pain, so that's good. They are still being given over long periods of time, but I think we are going to work on shortening them soon now that he is tolerating them better. I am not sure how long they are going to give the antibiotics for, but we will definitely be here a while longer while they are being given.

August 29th