EB Clinic

We had a surprisingly positive experience yesterday at a local EB Clinic! I was skeptical based on the recent interactions we have had with local doctors, but this was much better. We also got to briefly see another EB family when we were arriving! We saw a GI doctor, a nutritionist, and the derm. team. With the first two we discussed different ways to try to get more formula in during the day so that we can cut back at night, as Raul often spits up in the morning. We also talked about his reflux medicine; that it is best given on an empty stomach, and that it becomes less potent after 21 days. He will continue to see his regular GI doctor, but this team can consult if needed.

With derm. we spent a lot of time going over all his history, his most pressing issues, and how we do bandages. We talked about doing Apligraph on his wounds that haven't healed since birth, and hopefully we will be doing that in May. They are going to talk next week to some of the other EB specialists around the country to come up with an antibiotic regimen to use through the process. In the meantime we are going to continue his Bactrim until they make that decision, as we don't want to lose ground on the improvements/cleanliness the antibiotics have helped with. We also talked about his legs in general, and we may do an orthopedic consult about his painful knee and to address his ankle contractures.

At the end they also told me about some future trials their hospital will be involved with, so I am interested to hear more when those get closer! This hospital is further than our regular hospital, but it will be worth it if they will do more to help Raul! And hopefully when we are inpatient they will be able to consult by phone so we don't end up dealing with the same issues we had last time!

Outside!

Today it was finally warm enough to go outside to play for a few minutes! Raul had a good time playing with his cars and watching real cars and trucks go by. He also found a fun stick to play with!

 

 

And these are the crazy faces he made when I asked him to smile...

Cars and Ducks

Today we took Raul to feed the ducks! The ducks were actually swans, geese, and seagulls. Raul didn't want to throw the bread, but he thought it was funny watching them eat the bread my mom threw. It was a little scary at the end when all the ones from further onto the river came over, and the two giant swans! Raul liked it though, and said they were "nice ducks".

Raul made this car creation the other day. They are all stacked on each other, going two directions, with a tow truck in the middle. He told me to take a picture of it!

Rare Disease Day/A Hospital Stay

Last Friday was National Rare Disease Day, so Raul wore one of the "Part of the Cure" shirts to school. He was excited to wear a butterfly shirt, and sad to have to take it off at bedtime!

                                            

On Monday Raul went in for an iron infusion, and towards the end he spiked a fever over 103. He has been running fevers on and off for a while, so we thought it was likely his skin not the infusion, but they stopped the infusion just in case (it was almost done luckily). They had an on call doctor there come see him, and drew some more labs, but ultimately decided he should go into Boston to the Children's ER. Because he had an IV in, we had to go by ambulance.

                                    

When we got to the hospital they decided quickly that they would admit him as they thought it could be a deeper infection, but we still ended up waiting endlessly for a room, and got to the floor quite late. Raul was a mess from being so tired, and from getting some extra medications, so we didn't get much sleep. They also came in twice overnight to try to place a new IV, as his had fallen out.

 

Tuesday and Wednesday were both long days, and we had to do full bandages changes and soaks with gauze soaked in bleach water. The doctors were quite frustrating, as they did not listen to the fact that he has some medical related trauma from Romania, and that he needed better pain and anxiety management. The plan dermatology suggested was also basically opposite of what we have always been told. Finally late Wednesday we were able to see the palliative care team, one of whom worked extensively with an EB family I know from another state, so I think they will be a big help! 

 

 It took them an entire day yesterday to discharge him; three hours from the last time we had seen a nurse or doctor and when they had said it would be very soon. By then it was late, and we still had to take a taxi home, but we were very happy to be out of there! Yesterday Raul started to show cold symptoms, so it is likely his fever was just due to whatever virus he has. His wounds are colonized with bacteria, but they did not think they were necessarily really infected. Overall it was a very frustrating stay, for something he did not need to be admitted for in the first place!

Throwing Snowballs

Today is almost 50 degrees, so Raul and I went outside for a little while. Raul has talked about throwing snowballs a few times, so today I made some for him, and he had a great time throwing them! He laughed so hard when they hit the ground! He also loves his new medical stroller, which we got to help support his legs, as he often won't/can't bend them. The leg rest is adjustable, but he likes it all the way up most of the time.

Valentine's Weekend

We went to Rockport this weekend and had a Valentine's Day party for Raul! He had missed going to school on Valentine's Day because there was a delay due to snow, and he only goes in the morning. He was VERY excited about his party! We put up decorations, and he got heart glasses and a red necklace. We were supposed to get a huge snow storm, but it ended up mostly just being super windy, and we only got about two inches of snow. It was enough for us to go out with Raul's new sled, though! Raul loved sledding, and went out twice, but each just for a few minutes because it was so cold. Raul even sat with us in a restaurant when we went out to lunch! We haven't even tried this in a long time as before he would just scream, but he did great this time (with a new toy!).

Both nights were really hard, tough. He was up almost the entire night both nights, with lots of screaming and crying. It was hard to tell what was wrong, but it seemed to be at least partially due to pain and itching. Raul's legs have been getting worse, and we cannot find any local doctors willing to try artificial grafts for them. I am hoping the doctor we see in March will be willing! We are also trying to find a pain medication that works for him, as all the narcotics we have tried just make him super itchy and angry/fussy.

 

 

Updates

Raul had labs done a few weeks ago, and is in need of another iron infusion, but we are waiting a few weeks as his hematologist thinks she is making progress in getting our insurance to improve another infusion/injection that should help his anemia

My last foster baby has been in the hospital for almost two months now, and Raul loves going to visit! He asks frequently to go see her, and seems to like hanging out there!

Today we went to a kids concert. Raul was overwhelmed at first by the noise, but he liked seeing one of the bands in the hallway when we were watching from afar! We had to get their CD, as they have a song about fire trucks!

Raul putting his hands in the air along with the song

 

You never know how you will find him sleeping. Here he has his blanket as well as three stuffed animals!

Raul got an awesome new blanket wit cars on it from Binkeez for Comfort, and he was VERY excited about it!