April Updates

Raul had an iron infusion on April 1st, and again on April 27th. He continues to be quite anemic, and is symptomatic with fatigue and a high heart rate. His body just isn't holding onto the iron well, and at times his red blood cell production is decreased. Hopefully this issue will improve soon, or else we can hopefully find a different strategy for treating it! Raul scratched his eye at the beginning of the month, but thankfully this time it healed quickly and he only had to miss one day of school for it!

This month Raul also was battling infections. These infections caused some fevers, and set off the inflammation in his right knee. This area causes him intense pain with infections and viruses. He will scream going over every little bump in the car, when being lifted, and even if you just get close to his knee. He also wakes up screaming very frequently when sleeping due to this pain. Thankfully now that his two week course of antibiotics is ending this has improved. He is still guarding it a bit, and will lift that leg with his hand instead of just using his leg muscles, but he is not in as much pain. The wound on this knee also got very deep again this month. 

We took him to the ER on the 22nd due to his knee wound. The wound has a fairly large area that is showing tendon and even a bit of patella. Unfortunately, the visit was not very productive, but plastics decided to see him outpatient later in the week. The ortho. team did not think he needed to be worked up for a bone infection at this time. Raul really likes Blaze, the monster truck show, right now. But he proved at the hospital that he is actually learning things from it! A nurse came in to ask me about putting in an IV should they need to do one, and I was explaining how we do it so that nothing sticks to his skin. I didn't even realize he was listening, but Raul piped up and said, "that's adhesion!"

When we saw plastics outpatient they looked at the wound, and said they would contact Cincinnati for advice. We were supposed to hear back from them at the beginning of this week, but still haven't. If they will not do the grafts here soon, we will likely end up traveling again to get them done. He should not have to be going around with a wound so deep that his tendon/bone exposed!

Hopefully May will bring more answers/treatment for Raul's knee! Last I checked in with Minnesota, Raul's case had not yet been submitted to their external committee, so it will likely be a while before we hear back from them about if Raul is approved.