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!