So after an hour and a half on the telephone, driving into Boston, chasing down the social worker, harassing his poor pregnant NP, and hanging out for four hours at the in-house pharmacy he has his meds! Thank God. Yes it was a pain in the ass and yes Shawn nearly blew his top, but he picked up around $1500 worth of meds for $35. How can we not be totally grateful? Phew...I'm glad that is over.
He has some weird thing going on in his lung, when he breathes in and out it sounds like a flap is opening and closing. His O2 sats are fine, no SOB, no pain, no increase in sputum, but a nagging non-productive cough and that weird sound. The doctor thought it might be a "shaggy" airway, I guess where the new and old meet there is a bit if overlap, and that tissue usually sloughs off and is coughed up I guess. So the bronch and biopsy that was scheduled for Feb 27th got bumped to this Thursday.
In other news Shawn's benefit is taking off, tickets are selling well and we're aiming for a sell out.
It's super exciting, a lot of people are working really hard and pulling this all together.
I can't wait!
I have to say I've been thinking alot about Jenn. Jenn is a friend of ours that we met through our online Cystic Fibrosis community. She passed away suddenly and it's just so unfair. She was trying to get ready for transplant, she needed a double lung and liver transplant, but she didn't make it. I'm sure she didn't see it coming, she had just finished making this beautiful pink afghan for a baby shower, she had plans.
Her funeral is this Friday. What a fucking shame.
Be grateful for everyday that you have the privalege of walking around on the face of this earth, sitting in traffic, worrying about bills, and all the bothersome stuff. You can see the sun shining and you can love.
Rest in Peace Aunt Marybeth
1 year ago