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

Surgery

Raul had his surgery today, and he did well! We thought the surgery was going to be at 3, but then at 11-something they called up to tell us it was at 12:45! So we had to skip his bath and bandages today, as we didn't end up with enough time for it. We were out of our room for surgery for about four hours, but the actual surgery only took a little over an hour. There was lots of waiting on both sides of the surgery, but at least it's over! They called me back about 20 minutes after he came out of surgery, and he was just waking up. He opened his eyes and reached up, and the nurse thought he was reaching for me, but he was grabbing for my cell phone haha. He was feisty as always, and was ripping off his pule-ox probe, and throwing the blow-by oxygen mask. They said the only thing that wasn't totally normal was that when they removed his breathing tube they had to suction out some thick secretions. The anesthesiologist said that isn't too concerning given that he has not been very active. Maybe now that they suctioned it he will stop coughing/gagging so much!

When we got upstairs his oxygen was okay, so he got to get rid of those things. He has been pretty uncomfortable and unhappy, but we gave him some morphine about an hour ago. He has been rocking himself pretty much the whole time we've been back. Right now his nutrition is still through his PICC line, as they cannot use his g-tube right away, it is just draining overnight. Tomorrow I think they will start first with pedialyte, then with regular feeds, and will go up gradually while tapering his TPN.

Videos

Raul kissing his new puppy from Kristen

"Talking"

A Few Pictures

We gave him a mohawk after his bath today :)

Surgery Rescheduled

Raul's g-tube surgery is now scheduled for Thursday. There was a chance it was going to happen today, but after a whole day of Raul not being allowed to eat or drink, they came and told us it would not be until Thursday. He was surprisingly happy, despite being hungry, and did good work in the morning with PT/OT/speech. He is starting to scoot on his butt a little bit to get toys! Once he was allowed to eat he ate a pudding, a yogurt, and a baby food (a ton for him!). His mouth is really sore right now, so eating is painful, but he was so hungry. I haven't taken any pictures in a few days since Raul has been more fussy, but will take some soon!

Two Weeks

Raul and I have now been in the hospital for two weeks, and we have about another ten days at least. Luckily, since starting his new antibiotic, he has had two negative blood cultures, so they are no longer going to check daily. The medical team will talk to surgery at the beginning of the week to determine when they can fit him into their schedule again for his g-tube. He has been pretty fussy, but I think part of it is just that he is getting bored of being isolated. Yesterday we spent most of the afternoon sitting in the doorway so that Raul could watch people walk by. I am hoping that once his infections are cleared he will be allowed out, but my guess is he will still be under precautions until we leave. He has not had a fever in a while, which is very reassuring, and all his labs look good. Today is another bath day, but Raul is almost seeming to enjoy his baths these days, which is very unusual. He gets pre-medicacted, then we put salt in the water which helps with the pain, and bleach twice a week to help with infection.

Postponed

Raul's surgery was postponed until further notice. His blood cultures from yesterday again had bacteria, and they decided it was not a good idea to do the surgery while there was bacteria in his blood that could spread. He is still receiving vancomycin, and may start another IV antibiotic tomorrow if this one is not helping (based on another set of cultures from today). They will continue to do cultures daily until he has three consecutive negative cultures, at which point he can have the surgery. His antibiotics will go for at least ten days, so we will continue to be inpatient at least that long, and possibly longer. It's nice to at least have a time frame now. Raul has been very fussy this afternoon, but seems to be doing a bit better with some tylenol. We did his bath today, and he actually seemed to like it! The meds., and the lift into the bath, really seem to help! His skin is looking pretty good, for him, but is a bit smelly, which could be from infection. I will update as we have more news!

Pre-op Day

Tomorrow Raul is having his g-tube surgery at 1 PM. He had a great day today, and a lot of fun playing with the nurses and PT/OT/speech. He laughed most of the day, and it was great to see him so happy since tomorrow will be a hard day. Unfortunately, this morning his blood culture showed bacteria, but it looks like they will still be able to do the surgery. The final decision will be made tomorrow after another set of blood cultures comes back.

Playtime

A Busy Week

We have had a busy and stressful past week. But one of the good parts was having a visit from another GV volunteer, Dan, who has worked with Raul in Romania as well (and volunteered with us on our first trip). It was great to see him again, and for Raul to have a visitor! We also had a party to mark one month in the U.S. for Raul yesterday!

Last week Raul was put under anesthesia twice; once for a brain MRI, and once for his PICC line to be placed. His brain MRI came back normal, which was great! His PICC line has been holding up well, and he has been getting TPN and lipids through it for his nutrition. He is still not eating much by mouth, and is drinking barely anything. Today the nutritionist told us that even the days we thought he did pretty well over the past week, he only got about 1/4-1/2 of the calories he needs!

As the TPN is not a good long term option for Raul, he will now be getting a g-tube placed. There was much debate about this within the medical teams, but today we had a care conference, and everyone agreed that it was the right thing to do. There are still options open as to whether he will go back to Romania with it, or if they will take it out. While he has the g-tube, he will also get extensive feeding therapy to get him to eat a bigger variety of things by mouth, and to get more nutrition that way. Right now he will only eat yogurt and baby fruits, and apparently too much dairy just worsens his anemia. They decided not to do a blood transfusion for his anemia, as had been discussed before, as hopefully it will improve once he gets the g-tube.

We are very happy with this outcome, as last week there had been some talk of putting him on hospice care, and not doing the g-tube. This is because there can be severe complications for EB kids, and they are not sure how it will be handled in Romania. However, it just did not make sense to starve him to death to avoid complications that may happen years down the road, and everyone finally agreed on that! We are glad that Raul will be given this opportunity for better nutrition that most EB kids in the U.S. get!

Raul has still been spiking fevers intermittantly, and they cannot do the surgery until that is under control. His highest has been about 104. He is being treated with Bactrum right now, but they may switch it to Vancomycin if it doesn't stay down soon, as they want the surgery as soon as possible now that it's decided that he should have it!

He has also been doing some good work with PT/OT/speech. They have been coming in a few times a week each to work with him and help with his developmental delays. Improving in these areas will help him a lot for when he goes back to Romania! Everyone agrees that he is bright, he just needs some extra help afer being institutionalized. Raul is definitely a charmer, and many people here are falling in love with him just as many volunteers did in Romania!

More Pictures

standing like a big boy!

playtime

Raul loves rubber duckies

cards for Raul

I decorated his IV pole today

and his bed!

eating in his highchair

Tissue Paper Fun

The tissue paper needed a whole separate post, as Raul LOVED it. He particularly liked when I dropped the whole pile over him like snow.

Presents from Jane

A present from Jane arrived yesterday at the Ronald McDonald House, so today Raul got to open it. He was very happy, and loved his new toys and clothes (and this mama enjoyed her candy!).

EB Awareness!

Please watch this video about Epidermolysis Bullosa that I made, and spread the word! You will see the faces of many sweet EB kids, including Raul!

Thank You!

Thanks to Auntie Mar and family for the box of surprises for Raul! He had fun opening everything!