Will is officially off of medical hold for Make-A-Wish Foundation and they are working on planning his wish. It was originally supposed to be in Hawaii, but the concern over how to safely get him there has prompted a change to the Florida Keys. He wants to snorkel and kayak.
Thursday, week before last, Will swam for about half an hour while the littles had swim club. I was swimming laps in the pool while he kinda messed around. He really wasn't swimming as much as he was walking and playing. But by the time we got home, his resting heart rate was 130 and his diastolic pressure was in the 40's. We started an IV in what ended up being a long line of IV's.
Essentially, he had 8 IV's in a ten day period. He ended up catching a cold as well, so the combination of swimming and illness was too much. I probably should have taken him to MCV last Tuesday. He slowly improved, but it has prompted a whole host of questions.
If being in a pool for less than half an hour crashed him, how is he going to snorkel? We have started him in physical therapy, but I have no idea how effective it will be and the risk of it creating more crashes is a very real possibility. How do we handle his wish as well as keep him healthy?
As a side note...Next Wednesday Will and I head to Toledo for 9 days. We only have two doctor appointments, but the fact that they are in cities two hours from one another and the fact that traveling is so hard on William, we have opted to stay in Ohio. We are actually going to stay in a bed and breakfast because it was the same cost as the hotel, but it gives us two bedrooms instead of one. (Traveling with a snoring 14 year old gets really old when you spend hours in the same hotel room!) The owners are providing an additional dorm sized fridge since we will be traveling with 11 1.5 liter bags of fluids, but they wanted us to be able to store food as well. That is a huge blessing. I have no clue how we will manage all of this both financially and with Billy's long work hours, but the idea of traveling twice is not appealing at all due to the toll on William who is obviously struggling.