The home healthcare agency came out today and replaced the suction machine. The one I had was defective. I did have it set up properly though so that was good. The new machine works great.
Prior to coming, I told Dear Son that they were coming out to fix his machine. I told him that when he was choking I could take the tube and go "bzzt" and get the saliva out for him. He smiled when I told him that. I have to try to create some excitement when we get new equipment so he'll let me use it on him.
After the tech left, I tried it out on Dear Son. He was a little startled by the noise however he did let me in his mouth enough to get out some saliva.
We'll see if he is as eager to let me in his mouth after I take him for his dental check up tomorrow. He seems to have a lot more gum overgrowth, along with extensive growth on the roof of his mouth since his hospitalization last November. He is not on any medication that should cause this, so we'll see what they say.
We see a dental group that is affiliated with a big city hospital. They take care of mostly Medicaid children and poor adults with multiple mental and physical disabilities. It took a while to find a dentist who could see a child like Dear Son but I found this group over ten years ago. I had tried three other dentists but none were able to care for Dear Son. It is amazing to go there. Every patient has significant impairments and that is the only type of patient the dentists see all day. Can you imagine that? It's quite impressive. They have dental students there as well since it's a dental school. What's great too is that it's right across the street from the hospital. This is important since if the patient ran into issues during a procedure, they could wheel him across the street for an emergency. Something to think about when you have a special needs patient.
The dental school is very well run however. They group their days by visit type so one day a week they do all cleanings, another day all fillings, etc. Some special needs patients have to wait several months to get a cavity filled because this is one of the few places that know how to take care of people with severe disabilities. The average dentist can't manage a patient like Dear Son even if they say they take children:) It's also tough because many of these patients don't have dental coverage or their families or caregivers never took them to a dentist. Unfortunately, dental health falls to the wayside for some families in light of the patient's more pressing issues.
We go for a visit tomorrow and then after that, they'll set up a teeth cleaning for Dear Son. To get a teeth cleaning, there is typically a six month waiting list and they won't see the patient until they have a preliminary appointment like we do tomorrow.
To clean Dear Son's teeth, they typically put him under a bit. It's very challenging because they clamp the mouth open and won't allow the patient to close their mouth until they are done. It's pretty uncomfortable and I don't know that he can do that anymore. The last time he was crying out while they did it and it was very hard on me to sit in the waiting room and listen to him cry. (They also typically tie the patients hands down and I don't allow that. After all, I wouldn't want it done for me and I don't allow people to do any procedure to a special needs child that they wouldn't do to a normal child.) When you or I go to the dentist for a cleaning, they don't clamp our mouth open. When we go, they'll take out the suction device and allow us to swallow or to reposition ourselves but for the special needs kids, they keep them clamped open since it's too hard to get them re-clamped again. I don't like that part really and find it enormously stressful. Dear Son's never had a cavity in eighteen years though. We had an appointment last year and had to cancel due to his hospitalizations.
Aside from the clamp, they do a great job cleaning the teeth. The anesthesiologist is pretty good too. I felt really confident when I met him since he wasn't fazed at all by the number of medications Dear Son was on. After all, most of their special needs patients are on a lot of meds. I was able to have his teeth cleaned previously and had sealants put on all his teeth.
Thank you for all of your comments on the suction post. I really appreciated your support.
6 comments:
Ah, dental work! Been there. :) With all the other issues, it's like, "eh, teeth, whatever." I get them cleaned, regularly, but my dentist was on me for years to get my gums fixed. I have the opposite problem of DS--my gums have eroded on some teeth due to all my inhaled drugs. So I have to get grafts there...finally got the first set done last year. It's so easy to forget about the body parts that AREN'T emergencies, isn't it?
We were fortunate to find a local dentist and his very patient dental hygienist to clean our Dear Son's teeth. We had tried the special needs dentist in the big city, but the mouth brace terrified him as did the pulling of a tooth before the topical anesthetic had taken effect. The second time I took him, he screamed the whole 60 miles home. So I knew something had to change! We talked to our family dentist, and he agreed to try our son. Now, his dad holds Dear Son's head and "operates" the hand-held side mouth brace, which we take out from time to time to let Dear Son's mouth rest and give him sips of water. I hold Dear Son's hands, and an assistant operates the suction device while the hygienist cleans his teeth. She uses the "pressure wash" method that they use for people with braces, because it is faster, and he does better with it. He does fight us and cry but the crying is over before we leave the dentist's office. As he gets larger and stronger, it's more difficult, but so far he has had no cavities, and we do severely limit his sugar intake. We also play music and try to sing along with it while his teeth are cleaned, and while the cleaning probably takes two or three times longer than that of a regular patient, we are very blessed that they are willing to work with our son! Oh yes, we have also given him low-dose Valium prior to the appointment, but since it makes him half sleepy, he doesn't seem to cooperate as well,and we don't want him to accidentally aspirate any of the water, so we don't do that anymore.
We found the most wonderful dentist for Joe through the Montreal Children's Hospital.
Joe had overgrowth of his gums, due to being on Dilantin earlier in his life and had also broken his teeth with the head drop attack seizures he was prone to have.
Dr. Bonin cut his gums back, fixed all the broken teeth and removed a couple that were imbedded in his gums and were going to become problematic later in Joe's life.
He even arranged for Joe's Bard g-tube button to be changed at the same time, taking advantage of his being under sedation.
We were invited to see Dr. Bonin at his private practice, where he was set up better to take care of his special needs patients instead of at the hospital, which was sorely lacking in space for wheelchair patients.
What a set up he had!! It was in an old stone house that dated back to the 1800's. He had taken out walls, so that in a big open area, he had three dental chairs set up. A wheelchair ramp to access the building and wide doorways.
Most importantly, Dr. Bonin had the most wonderful "bedside" manner. While he worked on the children, he would speak to them and give them frequent breaks while he worked on their teeth. He wore the funniest surgical mask - he drew a dog's nose and whiskers on it. (reminded me of Disney's "Pluto" - lol) He even helped me lift Joe out of his wheelchair, into the dental chair. How many doctors would do that??
Dr. Bonin agreed to keep seeing Joe way past the age of 21 - in fact, saw him yearly until Joe's passing. He sent us a sympathy card, after Joe died.
I will never forget his kindness and the way he treated Joe. A very special man!!
~Canucker
I know this is terrible, but I hate the dentist. I have anxiety for DS right now. Thank goodness they give him some sedation. I need some just thinking about it. I was literally in a flop sweat the last time I was at the dentist. I'm too old to act like that.
Ah, the dentist. Peanut has an appointment this coming Monday. We go to a dentist who specializes in disabled children. He is AMAZING. I don't know how does it, but he gets in her mouth and counts her teeth and such with no issues. I can't even do that! We go Monday for a pre-appointment. Then we schedule time in the OR at Children's Hospital. They fully sedate her for cleanings and xrays. She takes nothing by mouth, and is extremely orally defensive.
I hope Dear Son's appointment goes well. And thank goodness for a working suction machine! It must be a relief to know it was defective, and not user-error. :)
Thanks, everyone. It's great to hear there are some great dentists out there for special needs kids. It makes it sound like it's the norm but I know it takes time to find them.
Emily-Oh, I can't imagine having to go through that. Ouch!
RR-That sounds like a great dental appointment. I love that they work with you like that! I know it's not easy. I had to laugh when you said you sing to him/play music. I have been singing to my DS for years and also play music to relax him. I used to bring a musical toothbrush to his blood draws when he was little, not for toothbrushing but because it was small and when I hit the button, he'd look at it and concentrate on the music and by that time, we were done.
Canucker-Talk about the ultimate dentist's office! I envy you with all of that room for the wheelchair. DS has large armrests on his chairs and it makes getting around even tougher some days. And Dr. Bonin sounds like an incredibly special man. As a mother, we never forget people who are kind to our children. There must be a special place in heaven for people like them. Joe was one lucky man!
Kristin-I hear you on the dentist. It stresses me out when I need something done.
ANKOP-Another great dentist. That's great he takes such good care of her.
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