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Wednesday, January 9, 2013

Dentist, Bi Pap, Preschool and Primary

Carter came home the day after Christmas, and let me tell you, getting his bi pap was ridiculous.  Since they call it a ventilator on a bi pap setting, I guess it's hard to get.  Apria was giving us heck to get it and we had already waited weeks, so the nurse manager finally went with Petersons for the equipment.  I wonder if we could have had him home for Christmas if they had switched companies earlier.  He has been more touchy and fussy since being home- he doesn't like me laying him down or touching him much unless it's deep pressure touches or holds or hugs. 

Carter went to the dentist yesterday after like 8 months, and he has two cavities! We were all surprised, trying to figure out how since he doesn't eat by mouth.  All we could think is that he throws up sometimes and has reflux, so perhaps the bacteria spread then.  He does have a lot of tartar around his teeth making them look yellow, but the dentist thought his gums and everything else looked great, and said the tartar can serve as a protectant or sealant.  He grinds his teeth a lot, but they also said his teeth look fine still.  So next week, I have to take him back and they will put him in a papoose, poor thing, and a restraint on his head so they can fix the cavities.  I feel so bad for him.

The bi pap is not my favorite, but neither was his feeding tube when we started out with it.  Carter's bi pap is a relatively small machine that we just put on a shelf, and we put distilled water in it for the humidifier.  The mask is small and just covers his nose, and we try to slip it on when he is asleep or close to it.  Then we turn on the oxygen to give him extra support.  So the bi pap delivers pressure to keep his airway open so it doesn't collapse or "obstruct", and then the oxygen gives him extra breaths per minute.  He was doing pretty well with it until the past three nights.  He wakes up once or twice trying to get it off, and some nights we give in because we are so tired.  He still seems tired and mellow during the day, so I'm not sure how much better sleep he is getting.  I follow up in the bi pap clinic next week so hopefully the card in the bi pap machine, which can show his sleep patterns and how well he is sleeping, can tell us how he is doing.

Carter has been to preschool four times now, and the teacher and nurse said he is doing great.  The van picks him up at 8:20a.m. and drops him back home at 4p.m.  The school is USDB which is Utah School for the Deaf and Blind.  He has six other classmates, one nurse, one teacher and one teacher's assistant.  They send a notebook back and forth everyday with notes on how he did, and a handout with goals and pictures once a week.  I treasure looking at these handouts and seeing how happy he is.  Once the van gets to the school, the teacher is right there to meet them with a wagon where she puts four kids in and wheels them up to the portable classroom.  So I send Carter with a hat and coat to keep him warm.  And he has also had to wear shoes, which he isn't too sure about.:)  We had an extra car seat, so they keep that in the van to transport him with.  They don't want his wheelchair since he doesn't use it a lot, so we keep it at home.  Right now he is going on Mondays and Wednesdays, but in a few weeks we'll go up to Monday, Tuesday and Wednesday.  And then eventually to all four days a week, M-Thursday.  I send him with his feeding supplies in his backpack, and diapers, wipes and food.  They keep his medicine in a fridge locked for the nurse.

A lot of people ask me if I miss him, and I do.  But honestly, Sierra keeps me so busy that the day flows by so fast.  She is crawling all over, pulling herself up, babbling and following me everywhere.  No peace for me anymore!  I tell people that Carter is much easier than Sierra in the day-to-day care, because he is so mellow and just plays with his toys. 

Carter is 3 and it's January, so he starts Primary this Sunday.  He also has a welcome party tonight to meet his teacher and see where his classroom is.  It's crazy how many changes are happening for my little ones.  Carter in school and primary, and Sierra crawling and soon to be walking.  I am one busy momma!


  1. We're going to the primary party tonight as well, hopefully we'll see you there! I'm glad he's enjoying school, it's amazing the things they learn when us Mom's aren't around.

  2. kid at home, what would that be like?!?

  3. I haven't been online in a while. Just getting caught up. I am so sorry to hear Carter was sick. Zoe has gotten RSV a few times now and each time it has been pretty nasty. I am glad to hear Carter did not need to be intubated and is doing better.
    I was interested to read about Carter's sleep apnea. Zoe was diagnosed with sleep apnea last year. We made some different treatment choices for Zoe because they were worried about bi-pap causing more aspiration pneumonias for Zoe because she refluxes so badly. So I will be interested in hearing how well it works for Carter. Zoe has been sleeping awesome now because of a new med we started. She still dips in oxygen every night and they are worried about the possible long term effects of oxygen deprevation on her brain and heart but we just have to make the best choices we can with what info we have. One thing I have learned with our kids is there never seems to be a simple answer!

    I will be thinking of you all. I love all the pictures!

    Take care,

  4. Thanks Genevieve for taking the time to respond and read the post- how are the girls? I would be interested to see what medication she takes that works. Carter sleeps about 8 hours a night, I was just hoping for more.;) Thanks Tarah! And Brooke, Sierra is enough energy for 2 kids!! Lol.

  5. So glad you have him back home and he is doing better. You are a busy busy mom.
    With Taylor's dental work we have found it is just easier to have her put under in the hospital so it is not tramatic for her to get her teeth cleaned, x-wrays and cavities filled all at once. It has been good for us.

    Take care and try to get some rest. lol

  6. Hi Jenny- they said they would put Carter to sleep if he had lots of work to be done, but the cavities are pretty minor. And personally, I'd rather not put him under unless we have to. And Genevieve I was thinking about your comment- Carter has been waking up more with the bipap and not sleeping longer. I am so tired of waking up with him and getting up early with him at like 5. So I am about ready to throw up my hands with this bipap. Unless the pulmonologist can show me it really does help him, I'm ready to give it up. He hates it and we are all getting less sleep.

  7. Hi! I just came across your blog! My son also has 1p36 deletion syndrome, so it was nice to read this. He has some different characteristics than Carter, but also many of the same. We have to support each other!!