Von Willebrand's Treatment

Today we spent our afternoon at the hematology clinic, getting more blood work done and trying out a medication. It was a long but very informative visit, with a lot of information given about how the medication works and when to (and not to) use it.

We started with a blood draw, for a baseline test of the Von Willebrand protein levels in RJ's bloodstream. This was followed by an administered dose of the medication, then visits with the nurse, doctor, tech, and social worker to while away the hour before the follow-up blood draw to check post-dosing levels for effectiveness of the medication.

We learned that he will not have to take any medication on a regular basis. What they have given him is Stimate (name brand), which is a nasal spray medication to increase his Von Willebrand protein levels in his blood to help with clotting in case of an injury or before a minor procedure. The proteins are made on the inner walls of the blood vessels, and the medication forces the blood vessels to release the proteins quickly to increase the levels in the bloodstream temporarily. The good news is that the likelihood of RJ needing to use the medication is slim in his day-to-day life. Mostly we just need to have it for an injury or if he has to get his wisdom teeth pulled. The other good news is that he doesn't need to be seen by them for 2 years, so we are doctor-free for the moment.

If he's ever in a severe accident or has major surgery he can't use this medication for those situations. There's an extremely limited fluid restriction for the 12 hours following administration, making it inappropriate for those situations. 

The changes to his life are really minor, all things considered. He will be getting a medical alert necklace (he had a choice between a necklace or a bracelet) that he will need to wear all the time. If he sustains an injury he needs to call the doctor before taking the medication (just to be sure he needs to), and they don't recommend contact sports, and he cannot take ibuprofen, aspirin, or anything containing those.  Aside from that, nothing else has changed. We all get new phone numbers in our phones, he gets a necklace and something to toss in the fridge, and we all get to be thankful that everything has turned out so well, when it could have ended so very differently.

A Morning with the Neurosurgeon

Follow up visits... We are now four and a half months post-surgery, and RJ had a follow-up CT scan and neurosurgeon visit this morning. I was hoping for it to be the last for quite a while, if not just the last.

The CT that was done 3 months ago was very good, with just a small spot remaining of fluid-filled space (about the size of the pinky finger to the first joint). Considering the large clot (fist-sized) that had been on his brain, this was simply amazing! His scan today revealed no remaining fluid or spaces, his brain has completely healed, woo-hoo!

On top of the healed brain, the skull has also begun fusing back together. This was unexpected due to his age. Since most of his growing is done, the skull wasn't expected to repair itself at all. Just goes to show, he's an amazing kid (I always knew that!)

Next up for him is an appointment with the Hematologist at the end of the month. They are going to try him on a medication to help with his clotting disorder, so this one will be a long appointment. There's blood tests to run, medication to be given, vital signs to check, waiting to do, then more blood tests and more waiting. I will have to remind him to bring a book or something to do for that one. After that, he may have blood tests that need to be done regularly, but hopefully no more office visits with them either. I am hoping our family doctor can take over again after that.

We've been extremely lucky with everything that has happened the last several months, and I thank God every time I go to work and don't have to see my child in the position of those I take care of there.