Eww!I can't even begin to explain the difficulties children and families affected by Osteogenesis Imperfecta encounter. One of the most frustrating things (and there are many!) they face are dental issues and finding good dental care.
In The Boy's case he has all of his teeth but not enough room for them, i.e., a severe malocclusion. The baby teeth rarely if ever come out on their own saving money on the tooth fairy but making it very difficult for adult teeth to find space to erupt. Consequently, he has teeth in the roof of his mouth and teeth in his gums and teeth all over the place.
I spent years... 8 to be exact... dutifully dragging him to a pediatric dentist every 6 months to no avail. The dental office was a cattle call. The dentist a joke. Thanks to our Children's Medical Services nurse (we love you Brenda!) and the CMS craniofacial nurse we were finally connected with a Big City pediatric dentist who cared. Yes, genuinely cared. His office is filled with special needs children, migrant workers and children who have probably found it difficult to get adequate dental care in the past. Irregardless of socio-economic status or medical complexity EVERYONE is treated with respect.
Fellow OI parent Melissa's hellish dental encounter detailed in her blog 3 Pretty Girls sums up the frustrations and fears that OI parents have to suffer regarding dental care better than my blathering on and on.
Read it and weep.
I'm happy to report, however, after this nightmare Melissa has found a dentist for her little one with OI. One who will actually listen to her and treat the wee one properly.
As for The Boy, he couldn't have gotten better care in the Big City Hospital. Again, as with his first dental surgery n July of 2009, he was treated like royalty.
Choosing the scent for his anesthesia mask. The winner was: Cotton Candy
After the above collage photo The Boy was taken to surgery with a large entourage of professionals. They were armed with the manual BP cuff which caused a sensation as always since no one uses manual BP cuffs anymore in a hospital setting. The Boy cannot have BP taken by Dynamap as the pressure exerted by this BP machine has snapped his arm in two. I think about Melisa when a nurse asks, "Well, if we can't take his BP in his arm what about his leg?"
Um...after 7 plus femur fractures I don't think so!
I give my speech to the anesthesiologist regarding The Boy's increased likelihood of developing a pseudo malignant hyperthermia reaction to anesthesia simply because he has OI ignoring the familiar glazing over of the anesthesiologists eyeballs. I'm not sure he's following me or taking me seriously until he picks up his phone.
"This is Dr. Feelgood. I need you to flush the lines in OR room number 4. Now."
I don't know what in the world this means but I do know that "flush the lines" signals the fact that I have been taken seriously even if the possibility of him developing a pseudo malignant hyperthermia reacition is rare.
I trot off to the Big City Hospital cafeteria while The Boy is in the OR where I encounter this:
Be still my growling stomach!
Be still my growling stomach!
Grilled Swordfish with Capers? In a hospital cafeteria? For $2.50? I'm getting a job here people. I mean seriously.
The surgery went well with 2 adult teeth and 2 baby teeth extracted without difficulty. Two other adult teeth that the orthodontist had recommended for removal were too deep to safely remove without breaking the jaw. "Maybe next year."
The dentist presents me with two little treasure chests containing teeth. I open them. Oh, God.
As the Artist (who cared for the girls in my absence) points out later, "there is still flesh attached to the teeth." Gross.
The Boy is feeling rough and extremely irritated that the nurse will only offer him juice and Popsicles. Eventually, he wins and gets chocolate ice cream which improves his mood drastically.
We head home within the hour. Puffy but, full of ice cream and eternally thankful that we have had the good fortune to find treatment for The Boys complicated situation knowing that so many kids with OI are not as fortunate.