After 2 LOOOOOOOOOOOOOOONG weeks, Graham is home. So many hugs and tears and high fives from our 2nd family on 10 Roberts. Graham is stronger and feels better than he has in a long time. We hope we don't see these fabulous Techs, Nurse's, House Keepers, and Therapists, for long time. There were a lot of longs in there... :)
But of course coming home entails drama, why would they want to make it happy and easy for anyone??? That's no fun.
| This just made me laugh - Graham needs a bouncy horse to take treatments on. |
Graham is back using a "High Frequency Chest Wall Oscillation Vest" or better known as "The Vest." He received one back in the mid 90s - this thing weighs 60 pounds and is yellow, old, has smelly air, and doesn't even work right. But they are trying to tell him that in his "stoned, highly medicated" state of mind, he told the social worker it worked. Ugh, NEVER TALK TO A HIGH PATIENT! Even Dr. Rosenblatt laughed at them. So someone had to come out and look at his current machine. What FABULOUS luck - the vest checker was a lady named Daisy. She use to work with Graham back at Children's CF Clinic! She walked in, took one look at it and goes, "Um, that's the Dinosaur." She turned it on, turned a few knobs and declared it dead. YEAAAAAAA! So now we have a nice, new, pretty, LIGHT AND ON WHEELS, vest. (Dinosaur Picture Coming Soon)
| New Pretty Vest |
Then there are his pain management medications. Insurance refuses to give him a 2nd prescription of Marinol - this time he needs 5mg. And the 10mg pills he has are gel capsules, so you can't cut them in 1/2. And, since the Morphine is a fairly new drug, the pharmacy does not have it and it won't be in until Monday. So Graham is back to being in a Dazed and Confused state of mind. Hungry as hell, but pretty much glued to the chair or bed. Hopefully Dr. Casanova can help out with this situation. Graham was finally enjoying life again (to a certain extent) and I want that for him at home too.
***update - Casanova saved the day and I am able to pick up BOTH meds on Monday :)***
Hi Erin, my name is Emily and I've been following your blog for months now. I'm a CF patient myself and I just wanted you to know how amazing you and Graham are. I know your struggles everyday seem like a nightmare, but your strength is inspiring. And I love that you can find the humor in things so much! Sometimes that's just what you gotta do! I check in every week to see how I can pray for y'all and will continue to do so!! Stay strong
ReplyDeleteThank you so much Emily, I can't tell you how much that means to us. You keep strong too!
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