William Update

We finally heard from the insurance company today to say that we have been approved for infusions in the doctor's office instead of admitting him to the hospital every time. This is such a relief in every way possible. The stress of going to the hospital so frequently, placing IVs and staying overnight is so overwhelming, but doing this at the doctor's office will make it more relaxed. We will still spend all day there for 2 consecutive days, but we won't be forced to stay overnight and each visit will only cost us our office copay instead of 20% of a $30-60,000 hospital bill. Most importantly to William, it will be IV-free.

We visited a pediatric surgeon this afternoon for a consultation about placing an access port so we won't have to fight his tiny veins each time and be concerned about which thumb he sucks and if it is wrapped up by too much tape. I assured him on the way to the doctor's office that we would not be doing anything painful today. He asked if putting in the port would hurt and I suggested that he ask the doctor that question. He also wanted to ask if he would be able to collect bugs for his bug collection. (It's a twisted route to get there, but he was concerned that having an object near his shoulder would prevent him from turning his head that way and looking down, for fear of bumping it....thus, he would not be able to look for bugs on the ground.) Dr Kadesky was sure to tell William that he would not feel them put the port in because he would be asleep and his bug collecting days will not be over. I asked if they would be placing an IV for the surgery and he said that they would do it after the "silly juice."

The surgery lasts about an hour, but can be shorter. The goal is to get him on the schedule for Friday morning at 6:30am (gulp!). He'll be able to go home by the afternoon. He is due for his next infusion on the 24th. The port will be usable next Tuesday and Wednesday for his first in-office infusion. If we can not get him on the schedule for Friday, it will wait until the week after Christmas and we'll set one last IV for the infusion next week. The surgeon assured us that he will get us in before the end of the year/deductible reset.

I did contact the pharmaceutical company today that offers subcutaneous IgG. This is something the doctor told us about last time we were in the hospital. It consists of us giving him weekly injections at home rather than spending days in the office or hospital. It sounds pretty good, but it does have its down-sides. One is William's "dissatisfaction" with needles. The other is the painful bump of fluid left under his skin for a day to dissipate. After discussing it with the pharmacist and nurse on staff at the company, I determined that it is not the right thing for us right now. It is successful for patients with immune deficiencies, but neurological conditions require much more IgG to treat them meaning more would have to be injected under his skin. It is the fat that absorbs the fluid, but William hardly has any fat on him at all right now. It would be a more painful and frustrating process for him that necessary, so we'll revisit the issue in a few years when circumstances have changed.

We sent in labwork to test for Lyme Disease. It will be a while before we get results, but we are hoping for something productive.

William showed the first signs of weakening today. He was very tired and more frustrated by his falls today. We'll hang in there through the weekend and be really ready for the infusion early next week.