Just a few days ago, we were taking down the Halloween decorations in room 813, the house was getting a full on sanitizing session, and Wil was excited to think about sleeping in his own bed, feel the breeze on his face, and see home, a place he has not laid eyes on in 76 days. But much like a lot of our last year, and life quite honestly, plans can change--rapidly.
I sometimes envision us, and this is funny because Wil can't swim and HATES water in his face, on a whitewater rafting trip. There are moments of such calm after being mercilessly jostled. Clarity, serene views. When Wil's counts finally showed engraftment last week, I felt like we were in a very beat up, wet raft, but we had made it down the rapids, tired from paddling, but alive. Exhilaration! Paddles dangling on the edge of the boat, no longer needed. A smooth, slow ripple coaxing us along, ready to bank, set up our camp (at home)...and just rest and dry out. But just as quickly as that warm, deep sigh moment presented itself, another big drop, water spray in the face, heart dropping moment, was on its way.
On Friday I arrived at UTSW, planning to bring him home. He had some elevated kidney numbers due to dehydration, and had been instructed to drink more water to improve it before discharge. In that short window of time that afternoon, my smiling, excited guy, spiked a low grade fever. We were told, as long as the fever could stay down overnight, he could still discharge early Saturday morning.
But even in the best laid out plans, even with skilled guides in what seems to be known waters, a rock can present itself in your path, requiring you to push against the current.
Saturday morning soon turned into afternoon with up and down temps. I left around lunch to go let out the pups, do some laundry (many loads this week with that terrible BK bladder virus trying to work its way out of his body in not-so-pleasant, uncontrollable, urgent ways), and grab some food. I had every intention of getting to work that night, but something told me I better just make my way back to the hospital and stay with him instead.
By the time I stepped on to the unit, I was quickly updated by his nurse. Temp had spiked. Heart rate and respiration were sky high (heart rate was as high as 150's and respiration was shallow and rapid at 40-50). His MEWS score (rating based on basic vitals) was a 7. Lucky score 7 gets you a ticket on the transfer transport to ICU. The ICU Rapid Response nurses were already on the floor monitoring. The only saving grace was his stellar blood pressure and looking mostly OK. As we all listened to him breathe like he just sprinted the last mile of a marathon, he said he felt OK.
For the next few hours they pumped him up with fluids to try and slow the excelerated vitals, tylenol and cold packs for the fever. We have become familiar with the backpack nurses of ICU. They are all so nice too, but I was just as happy and content not knowing who they were! We have had a few scares during this stay. Saturday was the first time I really thought he might end up being moved to their unit.
The fever was up and down, but his MEWS score came down to a 6 a few hours later, just enough to keep him on the BMT unit. It was a long, mostly interrupted sleep night, with frequent vital checks and the sound of Wil's shallow, breathy snoozes.
For several hours I just watched him sleep, like so many hours this year. It's moments like these that take MY breath away. That make MY heart race. My sweet guy, so medicated he has to be on fall risk, every movement a challenge, GI upsets, bathroom accidents...My private guy who would rather shower at home with the door shut...now needing to use a bedside comode and urinal, needing support to not topple over while he struggles to relieve himself every 20-30 minutes, breathing hard, breaking a sweat from standing, pure exhaustion at just doing the things we all take for granted. It reminded me of his first few weeks home from the SNF, up several times a night changing the bed, washing him down, and dressing him each time...oh the laundry and floor scrubbing in the middle of the night! Wil has been so independent as of late...fall risk is a trigger for him...but the changing of the sock colors to yellow, the bed alarm, the assisted showers...I know this is temporary and not January 2014...but it felt so raw for me Saturday night. It triggers me too. Triggers grief, the reality of all of this that I push away to push through. In the wee hours of Sunday morning, still awake, I sat in the dark, thinking...heart heavy about the year anniversary of my grandfather's death that had just passed, remembering how we weren't able to attend his funeral so Wil could have biopsy 3...the one that would start this whole whitewater adventure. I expected that as we apprached November there might be a flood of water in the raft to scoop out, this weekend just opened it up a little early.
I am ever so thankful for staff here...our life jackets...I used to chip in more and help out with tasks, back during our first stay in November 2013. Now I realize the work I have waiting for me at home when it's just me...on a 24/7 shift...no nurse, no tech, no housekeeping, no food service...just little old me to take vitals, adminster meds, change the sheets, help him shower, cook the food, and sanitize every day. And then try to work to pay bills! Added to my charming disposition needed to support him emotionally too. So I have learned to let go now and let the kind professionals do it while we are here. I have enough to focus energy towards emotionally and mentally right now in the form of just being here for Wil. Life at home will be overwhelmingly busy when the time comes, and it will, for him to leave 8th floor.
By Sunday night he was looking improved. Still some ups and downs with vitals, but they were better. We had stayed in our raft, even if water logged.
This morning he cried, his voice shaking on our usual top of the morning phone call before I get ready for work or a visit to him. And then so did I. I had teared up in the past few days, but not really lost it. His quiver gets me every time. He was feeling so out of control, no discharge date set right now. He had a better night, but there are some questions, medically, we need answered and treated before he can come home. And lately, his brain is pretty slow in grasping new information so all the plans fly over his head until it's explained a few times. His poor body and brain have been through so much this year.
Side note: He may hate me writing this, but for reference, for a little humor, let me give you a few examples of Wil's authentic misunderstandings due to a combo of chemo brain, fever, and sedative meds. I had asked him on the phone what he had eaten for breakfast. He quickly replied "just my pants and undies." I said, no, what did you eat. (annoyed voice) "Just my underwear then." I figured out he had thought I was asking what I should bring! He was also very inquisitive into why I was joining a basketball league and wanted to know which one. He also has had a side effect of one of the meds where he has visual hallucinations of colors or movements. He studied his styrofoam cup, turned it around and around. Then stated, "I just had a beauiful mind moment." And then the multiple attempted to act out his favorite YouTube videos, line by line with props. These are the moments of needed laughter the drugs bless us with. Laughing, not at him, but in spite of all this crazy. Wil has never liked alcohol, so this is, I'm guessing what he would be like intoxicated. Very serious. Impeccable comedic timing. And the faces he makes, eyes wide...in between all the other seriousness, he still makes me laugh after 15 years together. Even without drugs. LOL.
Today the team has come to the assumed conclusion that Wil is experiencing Graph vs. Host Disease (GvHD). His vitals scream septic, yet no infection has been noted in tests and blood work so far. But his body is under attack, most likely from the donor cells who have figured out they are not in Kansas anymore. They came, set up homes in his marrow, and got to work. And then figured out they were in a foreign body and started to fight.
GvHD can be life threatening comlication to a transplant. Feel free to google, but know they have been preparing for this possibility all along. Luck WAS on our side, in that he was still admitted when it started. So, while he has a sigmoidoscopy scheduled for tomorrow to confirm it (complete with enema to look at GI track, where they think his tissues are being attacked based on the 2 days of diarrhea and wonky vitals, and take a tissue sample to analyze) they began treating him for the GvHD with steroids already today! Covering all the bases here. Rapidly changing course as needed.
Tonight he stayed awake and hilariously alert while I wrote this blog, drugged but talkative and in his recliner for hours working on legos (although not getting far, his heart rate was around 115 while working on it and his MEWS down to 3!). He rambled on about wanting to be productive with the packing that is left, fears about the procedure tomorrow, but overall OK. He is still on fall risk, but he ate a little tonight, after 3 days of barely any intake.
Please keep him in your thoughts and prayers tomorrow, Tuesday. His platelets are still low, so he's getting pumped up with platelet transfusion already, a count goal of over 50 before the procedure. It's not that they haven't done these procedures for folks after transplant before, but anything that could make him bleed is not ideal when having low counts is an added risk...but its needed.
We still want to be home for Halloween! Cross your fingers...and toes...for a chance to make it to shore, safe from the tumbling, rolling waters of the past few days...we are ready for a toasty campfire built for two on a crisp fall night. We are ready for some time to stop paddling, to lay on a dry blanket snuggled, and gaze at a starry sky, even if just figuratively.
Much love.
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