Monday, October 31, 2011

Halloween at RMH

The little zebra is 1.5, the fireman is 2.5, and Raul is 2. He looks so little here!

The whole gang

Raul cuddling his toy they gave him. He also got this shirt from the volunteers, as he was way too hot in his costume after trick or treating!

Trick or treating in a wagon

SO much candy! That is a full size shopping bag. At each door we visited they gave out whole bags of candy (I had taken it out of the bags here), it was crazy. Then there was a bucket of all king size candies in the dining room. There are going to be some hyper kids around here the next few days!

Saturday, October 29, 2011

"Boo At The Zoo"

Today we went to "Boo At The Zoo" with some of the other RMH families. They had booths set up all around the zoo handing out candy and other treats. It was fun seeing all the kids in their cute costumes. Raul enjoyed the people watching, but again, was less than impressed by the animals! It was nice for us all to have a day away from the house and hospital!

Sunday, October 23, 2011

Raul's New Wheels

Raul had a walker back in MA, but we hadn't yet found one here in CO. Yesterday I decided to look on craigslist, and by 9 P.M. a new walker was dropped off at the RMH for Raul! In the past few months he seems to have forgotten how to go forwards in it, but he can still go backwards and sideways. This afternoon I tied a long piece of the netting we use over Raul's bandages on the front two legs so I can pull him in it, which he really likes, and it is much easier than bending over to pull it! The other little kids were all interested in it, and at dinner I even got a couple of them to pull/push him around the dining room. After dinner we went down to the playroom for a while, and are now back in the room getting ready for bed.

Raul has had a rough few days. Since he was discharged he has not been tolerating his feeds. Lots of throw up, and lots of explosive diapers! On his birthday we went to Radiology for them to check his button, and the J portion is still in the correct place (he had spit up formula, so they thought it might have migrated back into the stomach). He has been doing a lot of the retching he did before the tube switch again, which is awful to watch. Starting Wednesday/Thursday we started tinkering with what he was getting. Thursday he got a day of just pedialyte, then Friday morning I put back in about half formula and he did fine until dinner when he started throwing up again. So Friday night it was back to pedialyte. Saturday we did half-strength formula again, and he did surprisingly well! We got in about half what he should be getting, then today I got almost all of his day's worth of formula in. I am still using pedialyte to mix with the formula instead of water though.

On Wednesday they also stopped his antibiotics to see if it would help his diarrhea and vomiting. It has definitely helped the diarrhea, but I think the vomiting was related to the feeding. We have gone from about 12 explosive diapers a day earlier in the week, to maybe 2-3! This is great, as Raul's bottom was starting to break down a lot. And to my surprise, he is still fever free without antibiotics! When he was being discharged he was supposed to have a couple more days of antibiotics left, then later that day in the outpatient clinic they changed it to four more weeks, then the next day they were totally stopped! Confusing, but so far it seems to be the right decision! We have been laying low mostly though since he is still having stomach trouble. Today we made it outside for a few minutes, and to the playroom and the dining room twice, so we are getting more adventurous!

Wednesday, October 19, 2011

Birthday Boy

We ended up having to go to outpatient radiology today to check Raul's tube placement since he threw up formula and his g-tube drained some formula. The tube was in the right spot, which actually makes it more complicated to figure out, unfortunately. The child life lady who played with him during his test gave him birthday presents though! Then we went to the special care clinic and saw a nurse to talk about what we should do for now. We agreed not to change the rate on his pump, so he doesn't get dehydrated, but tonight we are doing mostly pedialyte instead of formula. Then we will do half formula again, then eventually back to the goal. No nap today though, so Raul was cranky this afternoon.

Then we came back for dinner and bingo! We got tons of prizes at bingo, everyone did, but Raul hadn't napped and he cried every time they cheered. He also cried when everyone sang happy birthday to him. He did like the stuffed animals and car he won though. Georgia came over with two kids she babysits to bring Raul a present when we got back from the hospital. The RMH staff also gave him a present when they heard it was his birthday; they gave him a big truck! When we got back to the room after bingo Raul fell asleep almost immediately, he was so tired. So overall it was a good day, but I'm not sure he likes birthdays haha

Happy Second Birthday, Raul!

In honor of Raul's birthday we are asking anyone who is interested and able to donate to CO Children's Hospital in appreciation of all that they have done for Raul. Raul has been receiving full charity care here in Colorado, and they have gone above and beyond for him. We want them to know how much those that care about Raul appreciate what they are doing. Please mark on your donation what it is for (this can be done online too). Any donations are greatly appreciated!

Tuesday, October 18, 2011

Twas' The Night Before Raul's Birthday

We were discharged from the hospital this afternoon, so Raul will be having a hospital-free birthday this year! I wouldn't say he is 100% for him, but he is SO much better than when we ended up in the PICU two weeks ago! Right when we were discharged we had an appointment in the Special Care Clinic to discuss more long term plans. So before we had even left the hospital, some plans had already changed! Instead of ending his Bactrim tomorrow, Raul will take it for four more weeks in case he has a deeper infection that we missed (like a bone infection in a different area, etc.). The cipro he will stop in a couple days though. They also prescribed a new itch medicine for nighttime, as Raul has been super itchy the last few days. We also discussed labs, prophylactic antibiotics, iron and blood transfusions, and the possibility of a repeat esophogram.

After going to the hospital pharmacy I hauled Raul and our stuff to the shuttle and back to the RMH. Raul did not have any clean home clothes left, so he had to leave in a hospital gown and his blanket, but when we got back we were greeted by a box of new clothes for Raul, and it was great to get him into something different! Due to his recent stomach issues, we had just been putting him in hospital gowns/pants since there was so much laundry, so it's nice to see him back in his clothes!

We got back just in time for dinner on the third floor. We ate with some of the parents/families we had met last time we were out of the hospital, and also met some new families. There are some amazing little kids here! After dinner we went to play in the playroom for a little while, and Raul had a lot of fun with the toys, and laughed watching some bigger boys run around. Raul played with Dakota for a while, and some of the bigger boys came over and wanted to play with me and Dakota's mom. It was nice to get updates on some of the people I haven't seen in a couple weeks! Apparently a group is going trick or treating on Halloween, and Raul was invited, so now we just have to hope he is still out of the hospital then!

Playing with a truck and wearing his new clothes from Laurie/The Butterfly Fund!

He loved this toy last time we were here too

I think this shirt is appropriate for Raul!

Trying out his new winter hat with dinosaurs!

Sunday, October 16, 2011

Birthday Week Part 4 (First cake!)

I'm not sure I want to try that

Hmmm do I want another bite?


...But I'd rather just play with it!