I have written this post three times. Never actually finished it, let alone publish it, but I’ve written down the details of the last three weeks in several different ways in an effort to keep you updated on Justin’s recovery.
There are too many little details, too many random things that, even now, I am forgetting about, too many hitches in the timeline, and too many instances where we thought we’d be soon heading home. Too many days where we were more focused on our emotional well-being as we looked “two more weeks” in the face.
I last left you after Justin had a GI bleed – ultimately caused by the blood thinners that were changed from an injection to a pill form because of an authorization protocol with our insurance company. (Side note: Remind me to tell you the thoughts going through my head three weeks later as I was sorting through my mail to find the letter from our insurance company stating that his shot was no longer “authorized”). The day after his colonoscopy had an IVC filter placed in his…chest?…to prevent the blood clot in his leg from traveling and causing issues with his lungs and heart. Essentially, he spent two days completely wiped out from anesthesia – however the rest was necessary. Discharge was around the corner (again) and the entire team was ready to send him on his way.
This is where I am going to gloss over some details, because, frankly, I was so exhausted during the next two weeks that I honestly don’t remember everything and reliving it just seems awfully counterproductive.
Late on evening, around 1:30am, Justin collapsed in his nurse’s arms. He never lost consciousness, but his body gave out underneath him. Around 3:45am, while in the bathroom, Justin again collapsed in the arms of his nurse, and this time a medical assistant. While it seemed he never lost full consciousness, he was not responsive to questions for about 10-15 seconds. Once he was sitting and off of his legs, he came to, a little groggy but he understood, for the most part, what had happened. He saw multiple doctors in the early morning hours, got a CT scan to check for possible seizure activity, and got very little sleep. Over the next 24 hours the entire plan for Justin shifted. His body was weak, deconditioned, and his muscles weren’t used to actually holding up his body. He now had to focus on building up his muscle mass again, retraining his body and his blood vessels.
The next morning brought us one of the greatest gifts we’ve received in this whole experience, Annie. She walked in and took over his care planning – got his diet upgraded to a full diet so he could eat whatever he wanted, got him scheduled with the Physical Therapy team to get some exercises to work on, and had him sitting up in the chair for the majority of the day. I couldn’t have been more grateful. Annie was with Justin Thursday, Friday, and Saturday – pushing him to fight his fatigue, and build up that strength that he needed to go home. The collapsing was stemming from the deconditioning in his legs – all of the blood in his body was rushing down to support the use of his muscles that haven’t been used in weeks. While our fourth discharge day had come, and gone, we saw the light at the end of the tunnel, and we knew home wasn’t far away. Or so we thought.
The high doses of steroids that Justin was on to recover from the Graft Vs. Host Disease of the GI tract and skin had done a number on his body. Steroids feed viruses, and one virus in particular, had been feeding on the steroids being pumped into Justin for weeks. CMV is a virus that typically everyone has inside of them, usually activated by immunosuppression – HELLO Bone Marrow Transplant! Justin’s CMV numbers were on the rise, not to a level of concern, but to a level that needed to be treated with IV medication that cannot be administered at home. The pills he had originally be on to treat the virus deplete blood counts – ultimately “damaging” the bone marrow. I wanted to scream. In fact, I’m pretty sure I did. Here we were, again, so close to heading back home and yet another complication came up that kept us in the BMT unit.
In one day, Justin had his port removed (yanked) from his chest due to a bacterial infection in one of the lines, had an IV placed in his arm (that took at least 8 painful attempts), and was told that he needed to stay in the hospital longer due to the CMV virus increasing and needing to clear the bacterial infection to get a new central line. I was home for the night, but am still, two weeks later, eternally grateful for my sister who was stay with Justin that night. She held his hand during the port removal procedure, listened when the doctors spoke to her, helped Justin understand (and remember – thank you, Ativan) the new issues that they addressed, and kept up with me via text for over 24 hours. I was a mess, but I was able to sleep, eat, and recharge because she was there.
The medication Justin started (foscarnate) is a heavy antiviral medication, that is toxic to the kidneys, so while it would take care of the virus quickly without damaging his blood counts (bone marrow), it required a lot of kidney function monitoring. Feeling stronger physically, and with this new crazy med being administered twice a day, Justin and I were confident that discharge was around the corner – again.
On Friday (3/17) morning during rounds, the doctors talked about how great Justin was recovering, and in what seemed like the same breath, said that due to the nature of the foscarnate and how pill antivirals attack the bone marrow that we could expect to be in the hospital for at least another two weeks. We were heart broken. There’s no other way to describe it, our excitement and motivation to push forward evaporated. Without our usual nursing team on staff over the weekend we felt alone, desperate to go home, and just defeated. It took two days for us to get to a comfortable place again. By Sunday, we were determined to control what we could – and that was getting Justin’s strength back. We set goals for exercise, eating, showering, and staying out of the bed. We talked about what we are looking forward to when we get to go home, and what we would miss about being here. We created an environment where it was okay to be here for a little while longer.
On Monday they ran Justin’s CMV numbers again – they had gone from 8,000 down to 500 with the week of foscarnate – it was working. While, the number is not low enough to warrant stopping the drug, or going home, we are headed in the right direction. They have tested his numbers again today and we are hopeful that they will continue to decrease and we will soon begin talking about leaving this room we’ve been in for eight weeks.
Tomorrow is eight weeks since Justin was admitted to the Bone Marrow Transplant Unit, seven weeks post-transplant. We went home for approximately 40 hours, and now have officially been here longer the second time around than with his original transplant stay. We have spent half of his 100 days post-transplant in the hospital. I suppose there’s some good to that – he was able to get through the worst of it with a medical team behind him 24 hours a day. We didn’t have to go through any of this while at home, we can go back and it will be a place of comfort, recovery, and relaxation. They told us every transplant journey is different, boy, were they right.