I came back to the hospital on Sunday afternoon and was pleased to see Eric looking and feeling much better than when I left on Friday. His voice was stronger too!
Saturday had been a bit rough with some vomit, but Sunday was a much better day. I got a text from Eric that Heather (Child Life Specialist) had bought a sno cone machine - Eric's favourite! - and Ashley (Child Life Specialist) had asked Eric to help her make sno cones on Sunday afternoon.
On Sunday evening, Eric opened a new Lego set, and look at that smile!
Monday came with a lot of visitors - SLP, Respirology, ID, Physio, etc. The SLP (Speech Language Pathologist) was really pleased with Eric's progress. Last week his voice was still very weak and breathy, and now it is much stronger and just a bit hoarse.
Respirology showed me the chest x-ray from Friday and it does show a slight improvement over the previous one. They said to just keep doing what we're doing. Also, contrary to my last post, it turns out that Eric is still doing the inhaled anti-fungal. He only stopped the Ventolin before it, thinking that might be causing the headaches.
Infectious Disease provided the most interesting information; though it was based on a Nephrology consult from over the weekend. Toward the end of last week, Eric was peeing way more than is normal for him. He was also saying that he was very thirsty and not able to quench his thirst. They've determined that he has Nephrogenic Diabetes Insipidous (NDI) which isn't diabetes as we generally think about it, but refers only to the increased thirst and urination. It is a(nother) rare condition which has probably resulted from the anti-fungal lowering potassium in his body. The lower potassium has caused a higher sodium count, which is related to the NDI, and higher blood pressure as well. This should be a temporary condition.
Unfortunately, Eric is still having headaches, but with some pain meds he was able to have a couple of good walks. He was even willing to let one of the volunteers put up a Pokémon scavenger hunt for him to walk around and find.
Eric's Oncologist is not only back from vacation, but he is also responsible for the ward this week, so we should see lots of him. He came by Monday afternoon to say hi, but we'll have a chat later in the week, once he catches up on everything.
On Tuesday, Eric had a reunion with Edward the Pet Therapy Bunny. The two of them were the stars of April in the 2025 Pet Therapy calendar. Edward stayed for awhile for lots of bum scratches. He is so soft!
Later in the day on Tuesday, Eric finished part 1 of his giant Lego set. It is Venusaur and he's hefty! The set has 3 parts in total. I hope it keeps him entertained for awhile, but he is such a fast builder!
Also on Tuesday I was able to chat with Eric's Oncologist for a bit. He thinks that the IV anti fungal is causing the headaches, in addition to the other side effects - low potassium, high blood sugar, increased thirst and urination. As a result, he wants to get Eric off of it ASAP, even if the susceptibilities test isn't back. He spoke with ID and they're going to put him back on the other anti fungal, Voriconazole, which is available in an oral tablet, not just IV. It will take about a week to build up in his system to a "therapeutic level" and then we can take him off the IV Ampho. Since Eric is doing well and continuing to improve he thinks it is reasonable to take Vori without the Ampho coverage for a weekish, if the susceptibilities test takes that long. If the susceptibilities test comes back that the fungus is not susceptible to Vori, he'll come up with a plan then. Aside from the side effects, the IV Ampho is keeping us in hospital and Eric's Oncologist is hoping to get us out before the long weekend 🤞🤞🤞
Tuesday night Eric didn't require any oxygen over night, so that's one more step toward going home also!! Unfortunately, Wednesday morning he was having quite a bit of head pain, but with some pain meds was able to rally for the afternoon for a walk with physio, a visit from Olive the Pet Therapy dog, and to finish building Blastoise, part 2 of the giant Lego set.
Wednesday night we didn't get a tonne of sleep because Eric woke up with head pain a couple of times, then nausea. Additionally, his blood pressure was high when they checked at midnight, so they had to recheck a half hour later and then give him medicine for it. The same thing happened with the 8am vitals and the head pain continued all morning with Eric needing some pretty hefty pain meds every 2 hours. He also wouldn't let me open the blinds because he's sensitive to light and noise when his head hurts like this. He ended up falling asleep around noon and woke up feeling a little better.
Respirology came to visit Thursday morning while Eric wasn't feeling well, but just updated me and didn't bother Eric with an exam. Resp had been talking to ID and ID wants to repeat all the scans in about 6 weeks to see how the infection is progressing. Since Eric is showing improvement, Resp doesn't believe they need to go back in for another bronchocscopy and potentially more debridement toward the end of this week/early next week, as they had originally been thinking. It doesn't appear that Eric needs the additional debridement so they are thinking they will do the repeat bronchoscopy on an outpatient basis at the beginning of October to tie in with the updated scans that ID wants at that time. In the meantime, they do want Eric to do a PFT (pulmonary function test) but are flexible in timing. I said not today because of the headaches, so they'll book for early next week and hope Eric is feeling better.
Friday morning Eric woke up nauseous and headache-y but not nearly as bad as the previous day. He had anti nausea and pain meds, and a blood transfusion, since his hemoglobin was dropping and felt better after all that. He was due to have his port de-accessed and re-accessed on Thursday, but since it was such a rough day, we decided to push it off a day. This, more than anything else, is an illustration of how long we've been at the hospital. This is the third time he's had to do the de-access and re-access, so that makes 3 weeks in hospital. He had to do this once during our June stay, but in the years prior to that, he's been able to get away without having to do the re-access. Maybe we're pushing it by a day because we know we'll be discharged, but no stays of more than a week-ish. Anyhow, being de-accessed for a couple of hours was nice for Eric. He was able to have a bath actually full of water, instead of just a few inches with press and seal protecting his dressing and lines dangling over the edge of the tub. After he was re-accessed, he asked for KD for dinner and then was just finishing up part 3 of 3 of his giant Lego set when Chuck arrived to stay with him for the weekend and I headed home for the weekend to hang with Joel and Millie.
As far as I can tell, based on the text messages that I have received from both Chuck and Eric, the weekend has been fairly uneventful 🤞I am headed back to the hospital shortly (Sunday mid-day) and here's hoping we're out of there by the time I post another update 🤞🤞🤞
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