We got a call back from Dr. Adams (the SB dr). He thinks the desats are being caused by silent aspiration or reflux and not sub-clinical seizures. So, when we we go back to Dallas in March they have scheduled for us to have another suck/swallow test to see if that is causing her desats. So, we will see! If not then we will see about seeing a neurologist.
She did not do so well on the way home today--desatted a lot and she wants oxygen now that we are home. I think she hates this west texas dryness. I'm also trying to figure out how to feed her more. I was going to feed her more frequently but she is not handling it and I don't just want to up her feeds 10cc because then I would have to pre-mix the formula and warm them each time and that is just too much work. :) So, I am still brainstorming to figure out what will be best for her. I forgot to let everyone know that she weighs 12.1# and is 22 inches.
I have also noticed that her suction fluid has a greenish tint so she may have an infection somewhere but I don't know why x-rays or blood work did not pick it up on Tuesday. I guess I need to call the dr. on Monday and find out. I also need to call the insurance company because now they are saying they want to cover Autumn's nursing hours when Medicaid and MDCP have already approved us for 122 hours /week and insurance will have to re-evaluate every 3 weeks. That was the WHOLE purpose of getting on Medicaid and staying in the nursing home to get nursing hours since insurance was not covering it. I don't want them to cover it because then that gets into our 2 million lifetime coverage and once we reach it Autumn will be completely dropped from insurance. It's just so frustrating. I am just sick of ALWAYS calling people and sorting through medical bills and arranging dr. appts. I get a headache just thinking about everything that I need to do.
Well, we are home and I am so EXHAUSTED!!! It amazes me how much taking care of Autumn wears me out both physically and mentally. Poor Gage wanted our attention when we first walked into the door and wanted to show us how he can hula hoop with 2 hoops but it takes about 15 minutes just to get everything set back up and Autumn situated. Anyways, we finally got to take time to hug the kids and see Gage show off. Now I am sitting in my chair too tired to do anything--I'm so thankful my nurse Terri is here to give us a MUCH needed break tonight. :) Thanks Terri for taking care of my baby girl so I can rest!!!! I also need to thank my mom for taking care of the kids another week and cleaning my house and doing my laudry while we were gone. So, we are home for 2 weeks before having to leave again. :(
1 comment:
You may want to do a trach aspirit. A lot of times when Mac is sick, it doesn't show up right away on her CBC or other work-ups, but it stuff grows on the gram stain from the trach aspirit. If you're getting green secretions, it does sound like she's sick... which would help explain the desats and need for O2.
Insurance issues are ridiculous. Seriously ridiculous. We pay hundreds of dollars a month toward insurance, but the minute we need to use it for something the service is turned downed or we have to fight like heck to get it. Arg. I hope you get everything sorted out and your insurance denies the nursing again so medicaid will continue to pick it up.
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