Samson is not completely 100%, but he is off oxygen. That's the big goal of our time in the bubble. Sam is breathing on his own. But he still has a helluva cough. He gets winded easily. So to treat this, we are giving him some hardcore antibiotics via his picc line. These are done by syringe, using a syringe pump, lines, saline, and heparin flushes. These doses are due around the clock, and are to be done in a very certain way. We are now nurses, even more so than we were before. We thought doing vests and nebulizers were bad - now we're administering hospital-grade medications at our home for the next two weeks.
The plan today: 1) picc line install 2) Big "moose feast" from the Moose Patrol. 3) get schooled about home health 4) go home!
1) picc line.
the picc line people said we'd go down to get this done at 8am. It was 11am instead. No problem. We were starving, but that's cool.
Sam got to ride down to the procedure room in a wheelchair. Pretty. Cool.
They made us wear funny hats.
Sam wanted a funny hat too.
The procedure should take only 15 minutes or so. A half hour later, we asked about him. Nurse said they were having trouble finding a vein (remember - they have to fish a tiny tube into his vein, then through his body like a subway system, so that it stops in a large vein near his heart.). They said he had some funky veins, and they were having trouble finding a good route.
An hour and a half later, he was ready. They said they tried four different sites in his arms. The last one - the last chance they had before going to full-on surgery - worked. That's great. However, the problem was that they gave him 6 times the amount of Ketamine they were planning on.
He came out VERY groggy. He puked. His eyes were shot, and weepy. He couldn't see, and was scared. Eventually he got his wits back, and we headed back to his room. He fell asleep almost immediately.
The nurses hooked him back up to the monitors naturally. They noticed his oxygen levels were dropping -- back into the 80% range. This is where we started all of this. We woke him up, made him cough, and did everything we could to get his oxygen saturation levels up into the 90s. Nothing really worked.
After some discussion, we all decided we should put him back on oxygen. This is literally a half hour before we (read: they - the nurses and doctors. Kathy and I know better) had planned on discharging us. Now Sam was back on oxygen.
2) Moose Feast: I ordered Moose Feast 2012 - THREE trays of food from the Moose Patrol. It was awesome. (I was excited - I was super hungy). Sam barely touched it. He wasn't quite himself. Still doped up on Special K. And on oxygen.
His main doctor assured us he was not going to be on oxygen for long - this is a side effect of the Ketamine. (6x the actual dose he was supposed to get). So we just needed some time to re-wean him off the O2 and get him out the door.
3) Nurse School: We got taught how to administer drugs by a nurse who came to our room. She brought everything we needed. It was like a pharmacy on wheels.
Three times a day, our setup looks like this. Schedules, saline, and syringes.
We administered our first syringe in the hospital. We passed!
4) Get. Out.: Once Sam's oxygen levels were up to 94% on room air, we got our walking papers. Woot!
So... we drove the 2.5 hours home. I'm enjoying a rye whiskey in a real chair. Sam is doing his meds and treatments on the floor of the living room. Comfort.
A shout out to Grandmas, Nanas, and Auties: Nana is watching Ozzie in Freeburg tonight so that we could make a quick and clean getaway. She is going to drive him up with her to our place tomorrow. Thanks Nana! Grandma and Aunt Debbie came down to our place in Champaign so they could prepare some food for Thanksgiving. Thanks Grandma and Debbie!
It takes a village.
We will apparently sit down and eat a big ol feast tomorrow. Kathy and I could care less about the large amounts of food. In fact, we weren't planning on even being home by tomorrow. It's nice, but not what it's all about. It's just a day. Thursday. Being with my kids, and the ones who love them the most, is the thing. That can happen on any day, any month, and would be meaningful.
Today I ran into an acquaintance I had met at CF Parent meetings in the St. Louis area. We go to these annual meetings to get information about the disease. We met this couple who, a year ago, were expecting their second child with CF. We shared notes. Today he was on our floor of the hospital getting admitted with his newborn daughter just coming out of surgery. She is 11 months old. She has had six surgeries since she was born. (An artery grew against her esophagus, limiting her ability to breathe - or something like that). He looked frazzled, crazed, jovial. He said he was thankful for every day he has with her. Each day is an adventure. He is still on that journey. As we were being discharged, after only three days in the bubble, I kept thinking about this man and his young family, and how his daughter is so so sick. They will definitely not be home for thanksgiving, whatever that is.
That man is probably more thankful for each moment than anyone I've ever met.
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