So, we've been officially diagnosed with Primary Ciliary Dyskinesia. It's going to be a long, tough road for us. We saw the Pulminologist yesterday and she's ordered us The Vest. (You can see it here: http://www.thevest.com/) Basically, it will help Nickolas move his gunk and junk around since he can't do it. It's a neat little medical device, I'm just worried what my insurance is going to say since it costs somewhere around $15 grand. Yup, you read it right: $15,000 for a vibrating vest. Whew!
We're also adding to his surgery on Monday a bronchial lavage and laryngoscope. It doesn't add any extra nervous-ness to the surgery, but it just means he'll be under anesthesia for more than 2 hours probably. Last time, the sinus surgery alone was close to 2 hours.
We'll also be scheduling an abdominal U/S and another swallow study in the next few months....along with about 30 other tasks to cross-off my to-do list for the diagnosis.
And, I'm having some health issues of my own right now, which are NOT helping matters any. I hate that I'm having to set time aside to focus on me when Nickolas needs me. I don't want to go into details yet until after I see my own specialist tomorrow and find out what it all means for me, but right now, it doesn't look fun!
At least, I've had a week's vacation to let it all sink in...and work on setting everything up we'll need to get the ball rolling on everything (and everyone at this point)....even Alissa will have her first shot on Friday....and every week hereafter. We really do have a lot on our plate and I have to ask myself some days how we'll make it through....and I quickly respond with God will get us through....so I have to hold tight to that faith.
We're also adding to his surgery on Monday a bronchial lavage and laryngoscope. It doesn't add any extra nervous-ness to the surgery, but it just means he'll be under anesthesia for more than 2 hours probably. Last time, the sinus surgery alone was close to 2 hours.
We'll also be scheduling an abdominal U/S and another swallow study in the next few months....along with about 30 other tasks to cross-off my to-do list for the diagnosis.
And, I'm having some health issues of my own right now, which are NOT helping matters any. I hate that I'm having to set time aside to focus on me when Nickolas needs me. I don't want to go into details yet until after I see my own specialist tomorrow and find out what it all means for me, but right now, it doesn't look fun!
At least, I've had a week's vacation to let it all sink in...and work on setting everything up we'll need to get the ball rolling on everything (and everyone at this point)....even Alissa will have her first shot on Friday....and every week hereafter. We really do have a lot on our plate and I have to ask myself some days how we'll make it through....and I quickly respond with God will get us through....so I have to hold tight to that faith.
It sounds like you have a long busy journey ahead of you. I will be praying for you and Nickolas and your entire family.
ReplyDeleteYou put that Alissa has her first shot and then one every week. What is she getting shots for?
She has severe outdoor allergies...especially grasses and mold. So, they're trying her on immunotherapy shots to see if we can improve her reaction(s).
ReplyDeleteI just had my first allergy shot on the 13th. I have my next one on the 21st. My allergies aren't severe but they do make my nasal passages swell and then I get headaches with all the pressure in my nose and forehead. I tried a bunch of meds but the only one that works is so new that the insurance won't cover it. They do, however, cover allergy shots 100%. I am allergic to dogs, cats, trees, dust mites, mold, and corn pollen. Cats are the only things I get a reaction from that I notice. I have to get one in each arm. Will she have to get them in each arm?
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