On Saturday around noon, Eric was transferred back to T8! I have never been so happy to be there! I do like to say that they are the best people you wish you never had to meet. I never want to be in hospital, but at least there it feels like "home" as much as a hospital can. We know the people and the routines and they know us. All week people have been saying how good it is to see us back and we (or at least me) are happy to be back!
Our goals for the weekend were simple: do not get transferred back to PICU and walk to the bathroom in our room. Eric nailed both of those!
With Monday and the return of regular staffing levels, we've been busy! Everyday we've had physio, infectious disease, respirology, plus ENT comes to check in occasionally, and Eric's T8 doctor once or twice a day.
Eric has been walking a little further each day and increasing to two walks per day, along with the physiotherapist. One day early in the week he said he thought he could make it to the end of the hall, but when he got there, he said he could go further. He ended up doing a loop around that section of the ward and stopping to play with some new sensory items in the Teen Lounge. So impressive! Another day, Eric and I did an evening walk and we went out to the T8 patio and blew bubbles. He is also supposed to be doing some physio for his lungs and was given bubbles and a wind spinner for that. On Thursday, Grandma was taking Joel to a play on Granville Island, but they came to the hospital to have dinner with us first. We gathered for dinner in the family lounge where we had a bit more space and a table to eat at, so Eric walked all the way down the long hall to the family lounge. He's nailing his physio!
He is 100% doing so much better than in PICU, obviously. However, after only a day or two after being extubated, Eric started needing a little oxygen support overnight. It does sometimes happen when he's sick and sleeping that his oxygen saturation drops and he gets a little "blow by" oxygen. That just means instead of wearing an oxygen mask, it rests near his face while he's sleeping. However, he was fine during the day while he was awake until Friday. On Friday morning he couldn't keep the O2 sats up so he was on oxygen all day. On the plus side, he was finally willing to try the nasal prongs instead of the mask (because the mask interfered with Lego building) so I think that will make for better nights of sleep. The blow by is great until he changes position, then his O2 sats drop and the monitor screams like he's flat lined (he hasn't) and wakes us both up. No one is getting any sleep around the hospital.
Additionally, Eric has been suffering from really bad headaches ever since we arrived back on T8. At first they were thinking he came off some of the infusions in PICU too quickly so added something back in to ease the transition. They've been checking his electrolytes multiple times a day, but they're fine. His hemoglobin is fine. Maybe not enough fluids, so increase the fluids, but that didn't help and made his lungs more congested, so less fluids. Eventually they sent him for an MRI on Friday afternoon, even though he'd had one the week before that was clear. The one on Friday afternoon was clear too, thank heaven! Eric is inhaling an anti fungal medication from a nebulizer in order to attack the "plagues" - the build up of fungus in his trachea - from both sides. On the weekend they thought that might be causing the headaches, so have stopped it. It definitely makes the headaches worse, but I don't know if it is causing them. I guess we will see.
For the fungal infection, the preferred treatment is Voriconazole, but there is only a 75% chance that the fungus will be susceptible to that treatment. Additionally, since that is the prophylactic anti fungal Eric was on previously, there is an increased likelihood that it will not work on this fungus. They do something they refer to as "susceptibilities" where they took a sample from Eric, grow the fungus and then test if the fungus is susceptible to the Voriconazole. We were told early in the week that it would take 2-3 weeks but that they (the BC CDC) had the sample for about a week and a half already. Later in the week we learned that yes they had the sample, but fungus is slow to grow and it only grew on the 17th and we're 2-3 weeks from that! The reason that timeframe is so frustrating is that while they test the susceptibilities, Eric is on a second anti-fungal called Amphotericin. It provides good coverage, but is only available in IV form, so we are stuck in hospital while we await the susceptibilities test. Eric isn't fit to go home yet, but I expect he will be soon and the thought of another 2-3 weeks in hospital is daunting.
Early in the week, Eric's blast count started to rise and one day actually doubled overnight. It was still relatively low, but the doubling was enough to have the team on T8 restart some chemo. It is a tough balance because the chemo suppresses his immune system and makes his liver angry, but the anti fungals also make his liver angry and he needs his immune system to fight the fungus. As a result, they started a chemo that is less hard on his liver and will just see how things go for now.
Between the headaches, the walks, and all the visitors, Eric has been resting and building Lego, of course. I had a big set (just under 1000 pieces) that I'd been saving at home for a rainy day. Grandma brought that in and Eric completed it in a couple half days. Thank you to the 2 families who gifted Eric additional Lego sets to keep him entertained for this long stay!
Thank you also to the 2 families who gifted us Safeway and Skip the Dishes gift cards. Those have and will continue to come in very handy over the course of this stay.
Chuck came to the hospital Friday afternoon for a boys weekend. Eric was telling me during the day Friday how he thought maybe he and Daddy would watch some movies from the MCU. Chuck has kept me up to date on the hospital goings on and I hope they've had a good weekend together! I was able to come home for the weekend to see Joel and Millie and sleep in my own bed. I had been in the hospital for two full weeks and not seen Joel or Millie for two weeks, but I had actually been away from home for 3 full weeks. It was a very full weekend with a lot of family and a celebration of life for a beloved aunt. It has filled my cup and I'm ready (ish???) to head back to the hospital and support Eric for the week ahead.
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