And of the medical hassles, the ER was the most pleasant one.
Our Christmas Eve tradition for the last few years is to have family over for Christmas Eve dinner. We stuff ourselves with appetizers and leave a ton of leftover ham, mashed potatoes, pasta salad and green bean casserole. Within three minutes of our guests leaving, hardly even giving us time to complain about the bottle of wine that we opened and was hardly touched (it was one of those mondo size bottles that leaves me torn between not wasting perfectly good wine and the fear of sleeping through Christmas Day in a stupor), Connor was fussing for his iPad by the kitchen table and went down with a loud thunk. I picked him up and set him on the island, hoping for his standard forehead bruise. It’s a constant battle to keep his forehead a normal skin color, and that is why he frequently wears head protection. I realized he was bleeding and called to Chris for paper towels. One swipe and I knew we had a problem. This was deep.
We headed to the Kennestone Hospital ER where Connor received three stitches. We were in and out in just under two hours. It was impressively simple and undramatic, but I guess when you’ve already done the NICU and brain surgery, three stitches ain’t no thang. In fact, Connor had spent the entire day being royally uncooperative as far as smiling for photos, giving me the first in the waiting room with a hole in his forehead.
Getting the stitches in was easy. Getting them out turned out to be the pain. The ER doctor informed us that while we could come back after the holiday, the wait would go back to standard long waits and suture removal is bottom priority. He recommended getting them removed at his pediatrician. I love his pediatrician. I do NOT love the office staff that stands between us. I called to make an appointment and was told that she’d have to check and see if anyone would do it on a young child’s face. “It’s just three!” I tried to persuade her. Two hours later, a nurse calls me back and says it’s okay. She transfers me to the scheduler. “Well, they don’t usually do this on kids under three. I need to check.”
“We just went through this,” I explained. “I was transferred to you by the person who got the okay.”
“I still need to check.”
After a long hold, she comes back. “You’ll have to take him back to where you got them.” I don’t think a doctor was even consulted. It was just “office policy.”
I was pissed now. I informed her we would not be going back to the ER. I did not inform her of how wasteful of time and money this was, or what a burden this kind of crap is on the system. I asked if an urgent care would do it. She thought they would. But after careful consideration of the all the germs floating around in waiting areas and the fact that the flu is reportedly raging through Georgia, we opted to Google stitch removal and do it at home. If there were a lot, we wouldn’t, but three seemed doable, and it was actually pretty easy. So take that, idiotic office policy.
I also handled the fact that last month’s paperwork glitch regarding Connor’s Sabril (vigabatrin) prescription was apparently never resolved. Typically, if there is an issue filling this prescription, a group called SHARE works with the manufacturer to make sure prescriptions go out. I learned that this is not the case if you are marked non-compliant with the eye doctor paper work. They had sent us last month’s prescription in spite of the screwup. Thanks to the FDA, they couldn’t do it again.
You see, Connor takes a seizure med that carries some risk to peripheral vision. The FDA, when they finally got around to approving it in 2009 — 30 years after initial clinical trials — decided that if you wanted to use it, you had to have eye exams every three months. They also recommend ERGs every three months. An ERG requires Connor to be put under for 45 minutes to an hour. We stopped those a long time ago. He had one come back indicating a change. But nobody could tell us squat about what that meant, or if it was even more than a fluke. Not even all eye doctors recommend it. Some bend to the fear of the FDA and others flat out tell you it’s a waste of time and they can tell you very little with young children.
The regular eye exams (at which the eye doctors also acknowledge they can’t tell you much and it’s just an empty requirement) are very mandatory. Paperwork must be submitted to keep the meds coming. Some parents speak of obtaining waivers for these, but those waivers seem like unicorns to most of us. Something wasn’t submitted properly. Then it didn’t get fixed properly. And then it was decided by all parties (other than me) that the best option was to not give my child his seizure meds and status seizures, brain damage, even death was a better possible option than some minor impairment of his peripheral vision. The FDA is apparently well aware that one needs 20/20 vision when on a ventilator fighting for life. I did not inform the manufacturer or pharmacy that I was able to obtain some for Connor so that he was not at risk for the terrible dangers of cutting a med cold turkey. Eventually the kickass assistant at his neurologist’s office was able to fix the situation, further proving that they are the only medical office I have ever been able to count on.
Sabril was not the only source of my fun with pharmacies. I tried to refill his Onfi. When I called to do so I was informed they were out and I could fill it locally if I had the local pharmacy call to transfer it. Annoying (don’t you plan for your regulars?) but okay. I had filled it at CVS before. First I tried Walgreens because it’s closest. No pharmacy in the area had it. Then CVS. Nope. Then Kroger. Nope. I called the mail order pharmacy, Optum Rx, back and asked what was I supposed to do now.
“Well, you may have to call his neurologist and get a prescription for something else.”
Something else? Just replace his highly addictive benzo?
“I don’t understand how you just run out of something you are supposed to mail on a regular basis. I want a supervisor.”
Three people later, we were able to piece together that by “out” what they actually meant was that they could have it to me by the following Wednesday, but they didn’t have it that day (Friday). It apparently took three people to get this vital piece of information that took a major issue to a non-issue. In pissed relief, I told them that was fine.
Have I mentioned I have three different pharmacies for Connor? So much for safeguards where the pharmacist can be that extra set of eyes watching for interactions and issues. I have to get Sabril from CVS Caremark (which is great as long as the FDA stays out of it), Onfi is from Optum Rx (their motto is “At least we’re not Accredo”) and all others from a local CVS.
So now we’re stocked back up on meds. It’s 2015. Despite all the venting in this post, I think it will be a good year and I hope it will be a good year for all my friends in the epilepsy community that spent the holidays in hospitals. I will leave you with some pics of Connor’s Christmas (three times in three homes!) to cleanse the palate.