Caleb’s Health Update – Part 2

You can read Caleb’s Health Update – Part 1 here.

So after Caleb’s last hospitalization in July, we remained hospitalization free for the entire month of August.  The first part of September, however, things changed.  Caleb’s neck incision opened up.  We had an appointment with his pediatrician.  She immediately decided to admit him for IV antibiotics.

That was a little more difficult stay because Caleb didn’t feel bad so it was hard to keep him down.  They finally brought the Wii in for him to play so he was in heaven!  This was also the first stay that he actually ate for us!!!!

The IVs worked very well and the incision healed very nicely.  It was then decided that Caleb would have stay on antibiotics long-term.  We began that regimen as he was still in the hospital.  A couple of weeks later; however, the neck incision opened again and I noticed something sticking out of it.  I took a picture out of it and e-mailed it to the surgeon’s nurse.  She called me back and told me that it was the lead sticking out of the incision.  We were then scheduled for surgery on September 25th.

If you’ve ever had surgery you know that you cannot eat or drink so many hours before your surgery.  We hadn’t had problems with Caleb waking up in the middle of night and getting into food.  However, when I went in to get him up about 4:30 so we could get to the hospital at 5:00, I found a half-uneatened piece of pizza in his bed.  I asked him what time he ate it and he said 3:30.  I was so frustrated because I had no idea what was going to happen.  We went ahead and went to the hospital.  I told everyone what happened  because Caleb refused to fess up!

Fortunately, they just made us wait the three hours until it was safe and we were still able to get the surgery done that day.  Although it made for a very long day, the surgery went well, they cleaned out the area and we hoped that it would help with the infections that Caleb had been having.

Then came November and the incision right above the VNS stimualtor opened up.  Caleb kept saying that his incision was getting itchy and soft.  I could tell that it was getting puffy so I contacted the surgeon’s office and sent pictures.  I was told that it was fine; however, I knew it wasn’t and just a few days later it opened up.  We got into the surgeon as well as Caleb’s pediatrician.  When we saw Caleb’s pediarician I told her I wanted a referral to an infectious disease doctor in Kansas City.  We had also just learned that Caleb was going to need surgery on his legs, but knew with the active infections going on that he could not have that surgery, so we wanted a second opinion with an orthopedic surgeon in Kansas City as well.

We got the infectious disease referral quickly, the orthopedic referral not so quickly.  Tony and I took Caleb to see the doctor on November 21st and Caleb had surgery scheduled for November 24th to clean out the incision right above the vagal nerve stimulator.  Bottom line, he has not been on the right amount of antibiotic.  At the time we saw her, he was getting 500 mg twice a day.  She increased him to 1000 mg FOUR times a day.  Based on everything we told her and the way it looked, the doctor told us that if there wasn’t a surgery scheduled for Monday, she was going to admit Caleb that afternoon and have their neurosurgeon’s look at him.

Caleb’s surgery on the 24th went well (there was no delay for eating after Midnight!).  Right now we do know that there fluid around the stimulator, but we do not know if it is infection or bodily fluid.  We’re just taking things day by day and hoping for the best.

We’re still monitoring Caleb’s neutrophils, which are still not normal.  In fact, we had labs drawn yesterday and his neutrophils are at 780 and they consider neutropenic 500, which is when they would admit him to the hospital.  We will recheck his levels again on the 29th.  No one can figure out why his numbers keep going up and down.  Two weeks ago they were at 1000, which is still low, and why we cannot get them to the normal range.

So we would ask that you keep Caleb in your prayers through all these medical issues and that we could find some answers!