Hello Family, and thank you for all of the support!
OK, I was a bit optimistic about going home so soon. I spoke to the pulmo during rounds this morning and asked about staying through Monday to avoid the grueling return trip for the first trach change (after that they happen at home). He is in agreement. I've been practicing on Dan the Dummy since yesterday, and the RT who supplies the Trilogy, who has been with us from the beginning, comes at noon to give me her training and get Matt off the hospital vent and onto the Trilogy. Next shift, I change the inner cannula. It seems fairly straight forward, once I get it all straight in my mind.
In addition to he getting used to the invasive ventilation, we are working on nutrition (he was always hungry on the 2 cal, so we switched tog glucerna with twice as many feeds. I finally found a nutritionist who didn't cringe when I mentioned blending, so I'll be honest about supplementing with real food done in the Vitamix). This morning she brought up a Diabetic formula. They can't get it in the hospital, but she's ordering it for home. Now that that's settled, endocrine is going to give me the new plan for managing his blood sugars. I don't have the strength right now to fight over the healthier real food formulas, and I don't know how much energy I'll really have for blending for him.
Speech is coming in to evaluate him for a Passey Muir valve. If he can come off the vent and still breath on his own (they will try that later) we may be able to ease into the eye gaze a little more slowly.
We are in the Medical ICU at the Durham VA Hospital, and I'm very impressed. He is so well monitored and alarmed that when something changes overnight, they are generally in the room before either of us is fully awake and reacting to it. The staff is warm, caring, attentive, and very professional. Our favorite equipment fairy from Prostetics (I'm sure any PALS or CALS who gets care here knows Deanna) as already made some more changes/fixes/improvements to his chair and has reordered the trilogy/o2 mount that somehow went astray. She is AWESOME.
We were not prepared for the difficulty of this MAJOR change. I am convinced that it is manageable with help and will enable us to make more great memories (closer to home
, but it's physically, mentally, and emotionally exhausting. The shear volume of supplies is shocking. Boy am I glad I started clearing more things out of our bedroom to make room for this stuff.
I'd already decided to move my cloths into a spare bedroom and send my dresser to the garage to make more room. It was a good decision!! My twin bed stays there, but it's on wheels and can be moved out of the way during the day or when I'm sleeping down the hall.
Me....I lost my cookies last night and had a serious meltdown. I imagine the staff somewhere listening over a speaker and being on standby to rush in if I escalated any further! After being fire hosed all day, I just couldn't cope with having to crawl out of my comfy chair every 4 minutes to do or undo something that we'd already done or decided not to do just moments before. Yep, I'm a full-fledged Queen of Ugly and it doesn't even have to be 3am!! Fortunately, once I calmed down we were fine and he actually had a better night. As I raise my head and look out the window, I'm staring straight at the Cambria. It's calling to go over for at least one night, and given the quality of care here I'm going to try to convince Matt that it'll be ok if I go. This is also a test. I learned from the social worker that in the event that I have an emergency and he has to be put into care without advance planning, he would stay right here on the ward where we are now. See how easy it's getting for me to rationalize a night away
. I'm getting there, folks!!!
OK, this book is long enough. Thanks to everyone who's gone this way before and shared their stories so that I've been as prepared as I have been, and to everyone for the good wishes and support.
And no, we will not be going back to Colorado. Not gonna happen...
Becky
Queen of Coping
