Not a large update in words, but a large one in other ways.
Ryan had several more CTs this morning. Two radiation oncologists as well as a medical oncologist came by to see us after looking at the scans. The cancer is taking over his organs, and while there are technically things that they could do, nothing will give the result that any of us want.. they'll only lead to more time in the hospital, and more pain.
So I signed paperwork again to have hospice take over his medical care. It was scary the second time, too. I'm not ready for this, but I know that he is. Soon he will be free.
The past few days have been a whirlwind. Sunday, I called to book transport for Ryan to get to Florida. We decided to go with ACC Medlink, an air and ground transportation service out of Florida. When I called on Sunday afternoon, I was told that they could pick us up that night! Of course, that was far sooner than I'd expected, so we opted for pick up at 7 the next morning.
Ken, my brother, had flown up to help me with things around the house the day that Erin, my sister, flew back to Florida. I'm so thankful he was there, because he helped me scramble around and get everything together for our trip in the morning. He also stayed at the house to organize packing what's left, load it all onto a moving van, and get it to Florida. I honestly don't know what we'd do without family and friends....
The trip down to Florida was stressful on Ryan's body, and the nurse on the van supported me in the decision to take him to the ER at Shands rather than straight to our rooms at a wonderful friend's house in Newberry. His electrolyte balance was way out of whack, and there is a possibility that he also has an infection. Both of these things could be responsible for the change in personality, confusion, and loss of coordination that Ryan had been experiencing. So, the past few days he's been on broad-spectrum antibiotics as well as IV fluids. He's looking better, but his spirits are down. I think he's ready to be done with all of this.
The oncologists here at Shands want to do a few more CTs to check things out and see if there's anything else they can do to relieve his pain. Then hopefully we'll be able to get him home and comfortable.
Sorry for the several days lapse in posting! Ryan is still at Hopkins, but there's talk of him being discharged today. I've spent the last 2 days talking to all many many people, trying to sort out all of the details.
He's recovering very well from the brain surgery. Unfortunately, the cancer is a whole 'nother issue. His swelling is worse, and while he has a good appetite, he can't fit nearly as much food into his stomach as he'd like. Small meals throughout the day help a bit...
As terrifying as this sounds, we've signed him up with Gilchrist Hospice. Really, it's been an amazing thing thus far. Now I'm not taking him home to an empty house, trying to figure out for myself how to deal with everyday life and his new limitations. The hospital could have helped with some things, but hospice covers much more and gives us a sort of safety net. Once we're home for a few days, if all goes well, we'll transport him to Florida.
So many people have stepped up to help us out with things that honestly I'm just flabbergasted. I don't even know where to begin thanking people for their kindness and hard work. This is such an incredibly difficult time, but we have amazing friends, family, and even strangers who have been standing in the wings just waiting for us to say "please help!" It is so comforting. So, if you're one of those people.. you have our sincerest heartfelt thank yous. And everyone else who is reading, offering thoughts and prayers - thank you to you as well!
Yesterday was pretty uneventful here at the hospital. I gather weekends are quiet here anyway - Christmas didn't help with that.
We did get to talk with a nutritionist yesterday, as well as another GI doc. The abdominal pain and bloating has several causes: liver tumor pressing on the exterior covering of the liver, tumorous lymph nodes blocking drainage from a kidney (which causes it to swell and be painful), fluid build up in the abdomen from the tumors (ascites), and then of course full bowels. We have the last cause under control at the moment, but there is unfortunately not much to be done about the others. There was talk of a kidney study and then insertion of a stent (like he had after his colon resection), and also possibly of draining the abdominal fluid, but Dr. Diaz is pushing for us to get home and then moved to Florida. So...
The doctors on the floor consulted with the pain team, and have upped Ryan's dosages. He seems to be more comfortable now, but the Dilaudid definitely makes him loopy and sleepy.
This afternoon, Ryan was moved from the neuro ICU floor to a regular neuro floor. He has a private room, which is nice.. means I can stay here with him!
He is still very bloated (perhaps more-so than yesterday) and that gives him lots of pain. The reaction of the nurses and doctors is just to throw more pain meds at him, but I think that is the absolute wrong way to approach it. So, I've asked to see another GI doc to hopefully get this sorted out. The neuro people are superb with brains, but not good at much else, it seems. I won't take him home before he feels better, even if it means getting discharged and then wheeling straight to the ER. ;) Hopefully we won't have to do that.....