Last Minute Trip Preparation

We leave on Sunday for Dear Son's Make a Wish trip. Everything is going pretty well except that Dear Son had a few issues of concern prior to our trip.

Dad picked Dear Son up for the weekend on Saturday night and noticed some bruises on his right inner calf. I didn't notice them prior so I asked him to send me some pictures of them. They looked pretty bad and I couldn't figure out how he got them since it's not like he can move his legs at all anymore and he can't really bump them at all. I was swamped at work on Monday so on Tuesday, I called his teacher to see if there were any accidents at school at all. She went through his day and said that no one had noticed anything and there weren't any accidents.

Dear Son had some bruises on his left outer calf back in February. I mentioned them at our late February office visit. They were small and yellow and never really went away. Anyway, when these bruises came up on his right calf, I was concerned.

I sent pictures to Ped Neuro doc and followed up with him today. He functions as Dear Son's primary doc. He requested that we get some lab work done at the Local Hospital since low platelets can sometimes cause the bruising. He wanted to see the results prior to our trip in case he needed to make any changes to his meds. Ped Neuro Nurse explained that Depakote can cause clotting issues so the doc wanted some labs done to check his platelets. If the count comes back in range, he won't adjust anything but if it comes back low, he'll decrease his Depakote. Interestingly enough, one of the other neurologists had increased his Depakote in December and Ped Neuro Doc had left him at that dose.

As a result, I had to call Dear Son's Dad to come back over to our house so we could take Dear Son in for lab work. Dad wasn't too happy because he had just driven a 100 mile round trip in the morning to come over and take Dear Son's wheelchair in to be repaired and then he had to come back over tonight to get the lab work done. He works twelve hour days tomorrow and Friday so he needs to be up by 4 a.m. tomorrow.

Anyway, while I was changing Dear Son today, I noticed that his right testicle seemed enlarged a bit. I figured I'd have the ER doc check it out since we were there for lab work. He decided to do an ultrasound to make sure Dear Son didn't have an abscess; if it was a cyst, it would be fine but an absess would be a bigger deal. It wasn't red, pus filled or swollen so it didn't really seem like it would be an abscess however they did an ultrasound anyway and it turned out to be a small cyst.

The lab work was done stat and the platelets came back low which could explain the bruising. The ER doc said the bruising does not seem consistent with the bruising from a low platelet count but we'll have to see what Ped Neuro Doc says. I can't for the life of me figure out how he could have these bruises since he really can't move his legs at all. Even when I move him in and out of the sling for the hoyer lift, I never touch his legs at all since he is so heavy I have to roll him side to side to get the sling under him and once that's done, it's a matter of using the hoyer lift to lift him. When I roll him over at night, I have to lift his hips to turn him so I never even touch his legs so this is a bit perplexing. I do however have to lift his arms to position them.

We'll see what Ped Neuro Doc says tomorrow. I am totally exhausted today though. We didn't get home from the ER until 10:40 and Dad still has to drive some 50 miles to get home and then be up by 4 a.m. tomorrow to work a 12 hour day. I was up with Dear Son at least once an hour last night turning him over from one side to the other. He seemed rather fussy and perhaps it was the cyst that was bothering him. I don't know. It's difficult for Dear Son since he can't move his arms or legs so if anything hurts or isn't in a good position, he can't help himself at all.

On a good note, they had a nice little graduation party for Dear Son at school. I'll share all of the details once I get the pictures from school.

The Make a Wish Foundation called me today to confirm all of the last minute details. Everything seems ready to go so I hope it all goes well. They have done a great job getting everything done for us so we can have a great trip. I am looking forward to it as well.

Update: I spoke with doctor's office today and they reviewed Dear Son's lab results. The platelets were very low at 75,000 (range is 140,000-450,000) and they told me the bruising was definitely caused by the Depakote. I was instructed to hold the Depakote for 24 hours and they also reduced the dose. The platelet count should go back to normal in about ten days. I'll follow up with the doctor when I return for next steps. This is a huge relief!