Finally got some appointments finalized for Haven.
January 13th she will go in to Pulmonary and be fitted for a cpap machine. I am still very leary about this and not sure this is what we want to do but it is definitely better than the alternative. We will then meet with the people from Kennedy Krieger Institute to make sure she is comfortable with the mask and equipment. After that we will set up our sleep study to ensure the proper fit and pressure. Her doctor says we may have to do multiple studies at first to make sure everything is working properly.
February 1st Haven will go in to see ENT to measure her adenoids and tonsils and discuss surgery to remove them. We did talk with Oncology about it and our concerns of surgery - he seemed to be ok with the decision of ENT says it needs to be done. However, we will make the final decision.
Another update on the attorney trying to sue us under Haven's name for $3,100......all of Haven's medical equipment. Well he has been put on hold for one month thanks to our case manager. I tell you, if you have a child with a serious illness you need a case manager!!! I know I wouldnt' have gotten the answers she has. So I'm waiting to hear back that this is all cleared up. We have enough medical bills that we don't need this. I also wanted it cleared up before we had to get more equipment!!!
More to come...........................
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
Good luck with your cpap machine Haven. I'm sure you'll do wonderfully. I noticed a few ROHHAD kids have had their tonsils out. Is this to help them breathe or some other reason? No-one's mentioned it for Nikki so far. Good news about the law suit. Hope it works out for you.
ReplyDeleteKaren
Boy Misty I can sure relate.We have medical bills up to our eyeballs.What gets me is these guys act like you went out on a shopping spree and overcharged things.It's for medical equiptment and services,obviously indicating someone is very sick.They can be pretty heartless.I understand they need to get paid,but have a little compassion.Both my kids have high risk case managers.
ReplyDeleteDear Misty,
ReplyDeleteThanks for the update. I pray that Haven will adjust to the cpap machine and that the adenoid and tonsil surgery will be successful when and if she has it.
Please tell Haven that I said hello and that I hope she has a great week.
With prayers & best wishes,
Wylene