While on vacation in Island Park, ID Ben came to my wife and I the night before our week long vacation was over and said his ankle hurts. We had him sit up on the bed so we could look at it and we immediately see that it is very swollen and noticably hot to the touch. We instantly recognize that osteomyleitis had returned.
Earlier that day his ankle looked fine. We had been on scenic rafting trip in some very cold water but Ben had not fallen or damaged his ankle in any way. Like last time there was no real trigger or event we could identify that caused it.
The next day we drive to Highland, UT (where Ben's grandparents live). We make it to an InstaCare in Alpine, UT around 5pm and recount his medical history for the staff there. They take some blood, x-rays and arrange for an immediate MRI at the local American Fork hospital around 7:00pm.
By 10:00pm that night we had an osteomyelitis confirmation from the MRI. It's in the same place as before. We are asked to drive immediately up to Primary Children's Hospital in Salt Lake City, UT. Ben and I are there at the Emergency Entrance by midnight all packed and ready for a week long stay just like last time.
The next few hours stretch into days as we begin an intense regimine of tests. Some are the same as before but some new ones are added (e.g., tests for Chronic Recurring Multifocal Osteomyelitis or CRMO as well as bone cancer are added this time around).
I put the doctors in Salt Lake in touch with the docs in Austin to “share notes” (though not much of that seemed to happen). The Primary Children’s docs insisted on another bone biopsy which we did not want Ben to have (see the pain from the earlier episode and the test revealed nothing to help Ben).
Ultimately, we relented after their voicing concerns that seeing and testing the bone would help them rule out cancer. That was, of course, VERY concerning to us (cancer had never really been mentioned as a possibility before)...but even more frustrating was the fact that the hospital lost the bone samples after they did the biopsy. The bone samples were never tested. We were furious over this – especially after they began downplaying the need for the biopsy since they had lost it. Interestingly, it took about 3 days for them to admit they had lost it. I was asking them for test results about every 3 hours during that period and became increasingly vocal in response to their having nothing to share.
The good news was that the Osteosurgeon told me that, after visually inspecting Ben’s bones during surgery, he was sure it was not cancer (he’d seen that many times before and he said this looked nothing like it).
Big tip here. We had told the docs before the biopsy surgery how much pain Ben had the first time. They offered to do a pain block (shot up his leg about halfway up his calf with A LOT of pain medicine 360 degrees around the leg). The doc said Ben wouldn't even know he had a foot for about 3 days. This turned out to be a wonderful thing. Ben had virtually no pain after the surgery and, by the time he could start feeling his foot days later, more standard types of pain medication worked well for him. Definitely ask for your child to have a "pain block" if they have to have any kind of bone biopsy or bone marrow extraction.
Another tip. We asked them to install the pic line at the time of the biopsy surgery (this time they put a pic line in Ben's arm for the IV antibiotics instead of a broviac line in his chest). This way Ben would only have to have one surgery - not two like before. This also worked out great and reduced the perceived stress that both Ben and we as his parents were under.
When this surgery was over, my wife and I again received training on how to administer the same IV antibiotics as before through Ben's pic line. We were pros and could easily remember everything from the last time.
After a week in the hospital we were home again going through the same regimine of care as before and on pretty much the same round the clock schedule.
It was amazing to us that we were going to repeat the same course of therapy which had not worked the first time. This did not seem to bother the docs but it really bothered us. Whenever we brought it up our concerns were dismissed. I had spent hours and hours online the first time Ben had this and now this second time but nothing promising turned up. There seemed to be very little course of action but to comply with the doctors. We did what we could nutritionally but that was about it.
We spent about 2 more weeks in Utah. I rented a wheelchair for Ben so we could finish up our vacation as much as possible. We rolled him around to take in a few additional sites but we had to get back to Texas for school to start.
One Friday morning in August 2010 we loaded up the car and left for Texas. It's a 20 hour drive and we changed Ben's meds in the car as we drove.
The week after getting home to Round Rock, TX we went down to Dell Children's Hospital to rekindle our relationships there with Dr. Fernandez and Dr. Prince.
Ultimately, we finished out the 8 weeks of antibiotics (have to take out the PIC line at 6 to 8 weeks because risks of infection/clotting increase after that length of time) and Dr. Ferndandez started us on 6 months of oral antibiotics “to make sure we get rid of the infection this time.”
The first time I got the prescription filled the pharmacist said “I hope you have a baby elephant with an ear infection. This is an extreme amount of antibiotics for a person to be taking.” I told him it was for a 10 year old kid and after seeing the distressed look on his face I called Dr. Fernandez’ office on the way home from the pharmacy just to confirm that I had the right medicine and the right dose. They did not like the pharmacist questioning their medication and told me to tell the pharmacist to call them if it had questions and not be worrying us, etc.
Ben took the medicine (oral Bacitracin) every day, twice a day for 6 months until March 10th 2011. That was the last day. After that day Ben was so excited to come home and throw away all the medicine and syringes we did not need.
Dr. Fernandez told us Ben looked great and we wouldn't be seeing her again. Ben could walk around without issue.
We were all very happy.
5 days pass and then....Bout #3
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