I thought I’d intersperse a few pictures of the progress of the site of Frank’s incision with an update on recent progress.
Last Monday we decided to try to eliminate the Pre-Dosing of Tylenol and Benadryl for Frank. We missed five doses, then, Frank started throwing up. The vomit continued for five times in the next 14 hours.
That night I got just four hours of sleep. That day, I took Frank to the ER to have blood drawn and to the local doctor. As we knew it would be, the doctor said “this (was) way out of (his) league”, but he was able to be the Eyes and Ears for the SLC Doctor, whom he called.
Through phone consultation, they were able to determine that since Frank’s GI and ENT, as well as heart and respiratory was clear, all the nausea and vomiting was an allergic reaction to the Vancomycin, because we hadn’t been pre-dosing. Experiment failed… much to Frank’s discomfort and our dismay.
Just as Frank’s stomach settled down, a night-time dose of Benadryl wound up missing it’s target (it fell out of his mouth) and was discovered late the next day. Soon, he was throwing up again. Just one session with one missed pill.
A few days later, with the vomiting under control, explosive diarrhea started. My guess is it was another allergic reaction, however, it happened on the weekend and on Monday morning, we encountered another set of troubles.
The nurse came to try to clear Frank’s line (again). When it didn’t work, she ordered some Activase, then started to do the weekly bandage change and cleaning of the site of the PICC line.
When we were in SLC last week, the Nurse was very quick about pulling off all the tape. This time, Frank asked our Home Health Care Nurse to go quickly. I think she went to quickly. It only took about 35 seconds to loosen the adhesive, but in the process, she also pulled the line out 1½”. Then, she tried to push it back into him (which I think was unclean and dangerous since it’s originally put in during surgery with Ultrasound and X-Ray’s for proper placement). It popped right back out.
At this point, the Nurse had me call the Infectious Disease Specialist. When I got them on the phone, instead of talking with the Doctor’s Assistant (like normal) the Doctor himself was retrieved. He said that because we’ve “been having so much trouble with the line, pull it and switch to oral.”
We called the Home Health Care Pharmacy. As we were telling them to wait to send the medicine, the delivery driver was pulling up, so, three doses of Vancomycin and one of Activase had to be scraped. Man! That Pharmacy is FAST!
By this time, the itching and discomfort, combined with fear, caused Frank to start crying and getting all-worked-up. We calmed him down and pulled the line. Immediately after we pulled the line, SLC called and told us to wait and pull it the next day, since NONE of the local pharmacies carried the new medicine in the proper form (liquid suspension). Since the line was already out, Frank wound up going 35 hours without a dose of any antibiotic.
Last night, Frank and I slept like the dead. It was the first time in over two weeks we were able to get a full-night of uninterrupted sleep. Heaven.
Today we started Frank on the Zyvox. Tonight, at 12:45 am, one hour after I “usually” get up, VOILA, I’m awake! After tossing about and starting to rouse Tom, I finally got up to write this. Hopefully, I can go back to sleep before 3:00 am!
Tonight I needed to give Frank a dose of the Zybox, tomorrow, we’ll have shifted him to a 4am – noon – 8 pm dosing schedule. It actually took Tom’s help to convince Frank to swallow his medicine tonight. He has to take 13mL, and it tastes awful. With him being practically asleep, I needed Reinforcements to insure that he didn’t spit it out on / at me… it’s “just” $1.90 per mL! Like Tom said, “you’d think that for $24.70 a dose, they could make it taste good!”
I was completely drained physically and emotionally after yesterday’s hour-and-a-half session with the nurse (after pulling the line, we still had to draw blood for weekly lab-work). I was also disturbed at the change. I’m a SERIOUS creature of habit, and we were suddenly being forced to change methods of application and types of drugs. Would Frank have another allergic reaction? Would he be susceptible to some of the more serious side effects of the new drug (namely bone marrow troubles and or blindness)? Only time would tell and we were suddenly being forced to figure it out.
I wonder if we should have another PICC line put in. This one had a lot of troubles, but were they caused by us (I overslept once and put in the Heparin and hour to late, then the nurse pulled too fast). Would another line slow down too? Is the risk of putting Frank under anesthesia greater than the risks from the Zybox?
What about the cost of all of it? The PICC Line costs “about” $5,530.82 per month, just for the pharmaceuticals and supplies, plus the insertion cost, the Home Health Care Nurse and Weekly Labworks.
The Zybox costs $285 per bottle (our co-pay portion is $140 every 3.8 days) or $2,565 for the course until we see the doctor in February. The original plan was PICC for 6 weeks then oral for 4-6 more weeks, so, will we be on this Zybox for 8-10 weeks? That’s a lot of time to be on such a Heavy-Hitter. Of course, the alternative is to stop taking all these strong medicines, in which case, the infection in Frank’s bone would likely prove fatal.
These aren’t things a parent should have to think about.
We all want our kids to be healthy.
Frank is healthy, except for this one “little problem” he was born with. I AM grateful that once treated this shouldn’t affect him, I just hope the side-effects are short-lived and limited to fatigue and gastro-intestinal woes.