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Thread: Having a rough time

  1. #16
    Join Date
    Jun 2004
    Regarding the apnea, has he ever had a sleep study? Sean has both kinds of apnea and the difference once he started on bipap was amazing...

    as for the blood clotting issues, Sean is on coumadin because we want his blood thin. It is a good thing though that they found out about your son now before the surgery, as some kids bleed profusely with spinal surgery. At least you are doing the surgery at "home" too... imagine driving 10 hours from home to have surgery only to have problems come up that postpone it for a time (been there, done that, had to pay an extra week and a half hotel bill while things got sorted out). 1 1/2 weeks pre-op is actually in my experience a fairly long time ahead, most of the time Sean's pre-op appts were within 3 -4 days!

    Keeping you and your son in my prayers that they can resolve this and make next week work for him.

    Hugs, Heidi

  2. #17
    Join Date
    Jan 2006
    Hi, Heidi
    My son seen the hematologist today. I guess the labs were only slightly off. They are waiting on one more that will be ready tomorrow. He has been given the ok for surgery. I guess if his lab comes back abnormal tomorrow. They can infuse him w/factor VII product the morning of surgery. I'm just glad it isn't as bad as I thought it would be. There are things they can do. Which is a relief, whew! I was freakin out yesterday big time! Honestly, I thought it was cutting it close 1 1/2 weeks before surgery w/all of these preop appts. Because it felt like I was scrambling back and forth to the hospital this week. And my nerves are already to the breaking point. I was shocked when you said that some of Sean's preop appts. are only 3-4 days before surgery. I can see for smaller surgeries but for a bigger one that would be rough but I suppose if the surgery is done a long way from home that is the only way it would work.

    Hunter had a sleep study done about over a year ago I would say. When I started noticing the apnea all the time. It revealed central apnea. I believe he has a central apnea when he sleeps. But I'm not convinced it has to do with why he pauses in his breathing all of the time when he is awake. I think the scoliosis has something to do with it. There is also a question of whether his baclofen pump medication dose is causing the apnea as well. He is on an extremely high dose for his weight and age. We went down on it a year ago but at one point my son was becoming to hard to manage. Alot of muscle spasms and rigidity that we went back up since we did not see any change in his apnea with going down on the dose. So it really is questionable what is really causing the apnea. They did try bipap with Hunter when he was in the hospital for his hydrocele surgery the first night. I fell asleep but when I woke up he was trying to get the the mask off of his face and I had the nurse remove it. He had it on for a couple of hours is what I was told. They are hoping to use it after he has the spinal fusion. If he is out of it which I suspect he won't care if the bipap mask is on.

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