The following takes place between Thursday, January 19th and Tuesday, January 31st.
(Wasn't that sweet?)
Ok, so here's the dill. This was by far the worst part of the entire process. The pain was terrible enough that I was given a morphine pump that I could hit every seven minutes. I time traveled often, and to this day I can't tell you who was around and when. There were days that I would sleep for 5 minutes, wake up, and forget what happened that morning. I experienced serotonin syndrome, which amoung other things included me seeing cats in my hospital room (admittedly a little funny in retrospect).
Point is, I'm deferring this post to my sister, Kym. She works in oncology and was updating a few of her friends at the time. As I have very little perspective/memory, here is...
The Life of Bulwyf in the Words of Kym
Day +6 today. He is not eating at all or able to swallow pills because of severe mucositis in his throat. Thankfully, the majority of his medications can be switched to IV drips. His transplant doc thinks he will need a morphine pump by the end of the week, but so far he is doing ok with just getting the morphine and other pain meds when he asks for them. Otherwise, just having some nose bleeds like he has had before. Hanging in there, though. I'll be here all day with him, trying to keep his spirits up.
Day +7 [Bulwyf] grimaces every time he has to swallow his own saliva so we are suctioning out his mouth for him when he needs it. He is vomiting daily but most of it is just mucous and pieces of his mouth and throat tissue which are coming off due to the mucositis. Morphine continues. He is also having fevers and his blood cultures grew bacteria (meaning there is bacteria growing in his blood) so he is on 2 IV antibiotics. He needs a bag of blood and a bag of platelets today, just like yesterday. Here's hoping for brighter days ahead.
Day +9 [Bulwyf] got a morphine pump yesterday which has helped tremendously. I strongly advocated for this, as it is NOT ok to see someone I love in this kind of pain. He is pretty out of it since he is getting so much pain medication but I would much rather have that than see him in so much pain. Since those pesky blood cultures were positive, he had to get the 2 Hickman lines in his chest taken out and gets all medication through IVs in his arms and blood draws from his arms. The TPN was also stopped because that would make the infection worse, but hopefully in a few days he will be able to swallow again and could possibly try some protein shakes to help get some nutrition. Here's to hoping. He started his daily shot, neupogen, to help boost his white blood cell count up ([Bill] also had a form of this when he was getting chemo). Hopefully it will boost his counts up to get him home to our apartment sooner.
Day +13 White blood cell counts are finally coming up which is great. He was doing really well yesterday- he got a PICC line placed in his arm and re-started TPN. This morning, they took him off of the morphine pump and just gave him small amounts of morphine when he needed it. His throat pain is improved overall.
This afternoon he started puking again and spiked a fever. Boo. Hopefully his blood cultures won't grow anything this time.
His goal is still to get home by my birthday next Wednesday, but we'll see.
[Bill] stayed home today and got all the rugs professionally cleaned, and rented a cleaner to clean every piece of furniture in our apt. This weekend we will get down and dirty with the deep cleaning of the hard surfaces. There won't be a germ left in our apt by the time he is ready to come home!
Day +15. I came in to the hospital at 7am and [Bulwyf] had a 104.3 fever and was vomiting. However, his white blood cell count is coming up so it is not unreasonable to hope for him to go home by next weekend... but we'll see. We need to find out where these fevers are coming from. He gets a CT scan of his chest, abdomen, and pelvis today. IV nutrition continues. Blood cultures from Thursday haven't grown anything yet which is great news.
Day +18: As of last night, there was some improvement overall, with a few road blocks in the way. 1) Those pesky fevers were coming from a new fungal infection in [Bulwyf]'s left upper lung. A second antifungal medication was started to combat this. 2) As his fevers continued unto the 104-105 range, so did the rigors (uncontrollable shaking). He was getting a drug called demerol for this, but this drug, in turn, caused Serotonin Syndrome. You medical folk know that this can be pretty nasty. The serotonin syndrome caused even more fevers/rigors/agitation so the demerol was stopped, IV fluids were increased, and [Bulwyf] has been on a cardiac monitor since yesterday morning. As of last night his fevers were down to 102. The unfortunate part is that since he couldn't get the demerol for his rigors anymore, there was a point where he rigored for about 3 hrs straight. :( Hopefully that is all over with now.
Upside: He ate solid food last night- a fruit cup and some mashed potatoes. Hopefully the TPN will be discontinued soon as he is starting to nourish himself again. Once these fevers ago away he can start thinking about coming home! The cleaning is done so now all we need is him.