Okay, so this has nothing to do with Rudolf or the elf that wants to be a dentist, but it does have to do with a dentist, so I had to have a more seasonal title..
SO....
I believe I have posted before about the saga we have had trying to find someone to work on Josiah's teeth (I looked back through and can't figure out what post it was in). So, I will just do a quick summary.
One of the challenging things about damage to the brain which happens in CP is that for many people the teeth do not form correctly. When Josiah's teeth came in there were holes in the enamel in various teeth on both sides, and all of the teeth on the left side were visibly thinner and smaller than the ones on the right side of his mouth. We consulted our doctor and he was not concerned, and we also consulted a dentist. There was only one dentist in the area where we were that both accepted medicaid AND took kids under 5 years old. Our thought was that sealing them would help they avoid decay as the holes where decay can get a foothold were already there. BUT medicaid does not cover tooth sealing, and as we were barely surviving financially so could not pay the high prices for tooth sealing. We were fastidious about brushing his teeth and making sure that those holes in his teeth were kept clean.
But even the best of brushing can not keep things clean entirely, and in the summer of 2010 I noticed a small spot of brown in one of the holes. As we had moved up here, we found the only pediatric dentist who took medicaid and young children here. . I called them first and explained his medical history, as some dentists (and heck, some doctors) can be hesitant to work with a child with his medical history. They said they see kinds with all sorts of special needs. So we made an appointment. Gonzo got his cleaning and check up done first. And then Josiah's turn came, and they decided at the last minute that to even clean his teeth they needed clearance from a cardiologist and a pulmonary doctor. As he had been cleared by cardiology as a baby before I even adopted him, I did not have a cardiologist, nor did I have or know where to get, the paperwork showing that he had been released from cardiology. So began a six month saga of getting a referral to and an appointment with a pediatric cardiologist (with chest x-rays and an EKG done beforehand. Due to a snowstorm in late November 2010, they canceled his appointment and rescheduled him for January. So finally in January we saw the cardiologist and he was pronounced to have a healthy heart that needed no followup or any special treatment for dental work.
So we submitted this to the dentist the very same day. Then we were told his pulmonary clearance was too old for them to be able to do a cleaning. So I called this pulmonary doctor to get a new clearance letter, and was told it had been too long since his last appointment and we would have to come in again. So they scheduled us for 3 weeks later. On the 2 1/2 hour drive to see the pulmonary doctor, my car broke down on the side of the highway. We missed the appointment, but thanks to a very helpful police man were able to get the car running well enough to limp it off the highway and get it to a shop where it was fixed. OF course I had to rely on family to help as I did not have the funds necessary, so my Mom and step father put some money on my green dot card (handy little thing that is). Josiah and I had a long lunch at subway that day while waiting for the car to be ready to drive back home (the car died completely about 2 1/2 weeks later). So we scheduled another appointment, the earliest they had was in March. About a week before the appointment the office called to say that his pulmonary doctor who had been following him since he first PICU emergency was leaving the practice and would I like to reschedule with one of the other doctors, which would be an appointment for late April. So I declined and decided to find a closer one. Josiah's pediatrician referred us to a great pulmonary group at a closer children's hospital (only 1 hr and 45 minutes way). The appointment was for mid-April. So come mid-April, we got in to see the new pulmonary doc, and he was great. We got the specific clearances that the dentist needed to both do regular cleanings and sedated dental work. We took those to the dentist office, and they had to check with the doctor before scheduling a cleaning/checkup.
but this time that little spot of brown had grown and three other teeth with holes had started to show brown spots, and in the areas of thin enamel there was some discoloration starting. So finally in early June he had a cleaning and x-rays, and a check up, nearly a year after this saga began. 14 of his teeth are affected, with that first one I mentioned being the worst one (that one cracked and broke in early July, but as it did not seem to be causing him discomfort the doctor said it would be fine until surgery. So we were put on the waiting list for dental surgery. I got a call from the person that handles it and she said she needed more medical records from his doctor as the surgery center was not sure they could handle his medical issues. So that was all sent in. I told her to tell me now if they are not able to do it, as we had waited long ewnough and if they couldn't do it, I was willign to drive out to the dental school attached to a children's hospital 5 hours away as I knew that they could be comfortable with his medical history and current issues. They got back to me in a few days and said the surgery center and anesthesiologist had reviewed his history and were comfortable doign the surgery. So we were all set and just had to wait for a space to open up.
In August I get a call that he is scheduled for September 14th. So we start preparing for that, hada heck of a tiem scheduling his pre-op, but got it all set up. And then two days before the surgery he developed a fever and stuffy/runny nose and a cough. So he could not go under anesthtesia. So he was again put on the waiting list. I got a call in mid-November that he could come in either december 8th or 22nd for the surgery as they had openings on both days. So, as his concert was the 8th and he was so excited about the concert, we chose the 22nd as his surgery day. We had his pre-op done, got everythign all arranged, and even notified the school. He had his intake phone call with the nurse on Friday, and everythign was all set for this coming Thursday. A and I both took the day off, and were ready to roll. Josiah had been complainign of tooth pain since Saturday, so we have been rinsing with salt water a few times a day, and I was looking forward to him finally getting these teeth fixed.
Then on Monday morning I get a phone call that the anestesiologist changed their mind at the last minute and now is not comfortable working with josiah's medical issues. So they can not do the surgery. 18 months of jumping through hoops, getting clearances, being told that they can do it, and THIS last minute decision NOT to do it. At least they are calling in a prescription for amoxicillin to deal with the infection that appears to be developing in Josiah's tooth. But that does not solve the problem. Now we have to start over. Now Josiah has to wait even longer with his teeth getting continually worse. Even with good brushing and trying to make sure he rinses with water after eating sweets or crackers that stick to his teeth, his teeth are still slowly deteriorating. For a kids with a great smile and such a normally happy disposition (except at school for soem reason...) it is horrible to make him wiat any longer. So, I am a bit frustrated....well much, MUCH more than a bit.....
I just have to breathe and roll with it, and doctors, dentists and teachers are definitely not all cut from the soem cloth. Some are in those positions becasue they want to help all people, and others only want ot work with the easy ones, and shove the rest of the children aside. Good old Nazi ideals at work, elimiate all that do not fit the mold. Lately, I feel like we are dealing with more than our fair share of inflexible and intolerant professionals when it comes to Josiah.....
Well, maybe with the anitbiotics and not the surgery, Josiah will have a better Christmas. He always has a hard time for a few days after anestesia....So Merry Christmas....
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