Eric has officially been away from home for more than a month. We left for our vacation on July 29. He also was not home at all for all of August, since it is now September. What a terrible way to mark time.
I came back to the hospital on Sunday afternoon and not much had changed. Eric was continuing to feel fairly well and it had been an uneventful weekend. He did finish his giant LEGO set.
Since Eric was doing well and his Oncologist had said he'd like to get us out before the long weekend, I had begun to believe we'd be out by Friday. Eric's Oncologist had mentioned maybe starting a round of IV Chemo, which is 5 days, on Monday, so I mentioned it to the clinic doctor Monday morning, but nothing happened all day Monday so I thought they had decided against it and maybe we'd even be able to go home Wednesday or Thursday. Then, Monday at 4:40pm the clinic doctor told me that they'd be starting the 5 days of IV Chemo the following day. I asked him if we could start it that day so we could still go home on Friday, instead of now making us stay until Saturday, which seemed completely ridiculous. He went to check, but came back and said the decision hadn't been made until 3:30/4pm and it was too late in the day. I was really upset and went to talk to our Nurse Practitioner and was crying by the time I got to her. She gave me a big hug and told me the chemo techs go home at 4pm, but she would check the following day and see what needed to be done for us to go home and come back for the chemo as an outpatient. Before she left for the day, she had emailed me a list of those items.
The following day, Tuesday, they did start the IV Chemo and Infectious Disease came by with amazing news: the susceptibilities test was back and the infection IS susceptible to the oral anti-fungal medication!!! This was actually on the early side of the 2-3 weeks so I hadn't been expecting to hear so soon. Eric's Oncologist came in the afternoon to go over a plan for us. We were still waiting to hear if the oral anti-fungal was at a therapeutic level in Eric's bloodstream, but his Oncologist was okay to stop the IV anti-fungal anyhow. He also said that Eric could do the inhaled anti-fungal as long as he was in hospital, but didn't need to do it beyond that. He said we'd be able to go home late Wednesday or sometime on Thursday; that they just needed to monitor Eric's electrolytes now that he was off the IV anti-fungal.
On Wednesday the clinic doctor said that Eric's potassium had increased substantially. He wanted to take Eric off the fluids with added potassium and then monitor his electrolytes so said he would like to keep us one more night. I said that was fine, but asked if we could have discharge by noon on Thursday. Sometimes they discharge late in the day and I hate waiting all day just to sit in traffic. The doctor came back late afternoon and said everything looked good for noon the following day and he'd sent the prescriptions to pharmacy already.
Thursday morning Eric had 2 nurses, a seasoned one and a trainee. They were still in the midst of their morning stuff when the doctor came in. He told me that Respirology was uncomfortable with us leaving. They didn't want to stop the inhaled anti-fungal, but in the previous 3 weeks, had taken no steps to make it available to us at home. At least they also didn't think it was reasonable for us to continue to stay in hospital for another 3 weeks just so that Eric could do 6 weeks of inhaled anti-fungal. Their alternate solution was to do a bronchoscopy so they could take a look and see if things are improving, as they appear to be, and potentially do more debridement if needed. They were going to try and get Eric on the OR schedule for the following day. So we waited, and waited, well past that noon discharge time. Eventually, the Respirology fellow came to tell me that they weren't able to get Eric on the OR schedule for the following day, so we could go home. She said they would get him on the schedule for next week, and we'd get a call the afternoon before to let us know. I said that was fine, but Eric was starting a new school next week, so it's important that he starts with his peers. She agreed with me and left the room. I started packing up our stuff and got ready to leave before anyone could change their mind again and tell us to stay. This was 4 weeks to the day from when he'd been admitted.
We got home at about 4pm and it was amazing!!! Eric was a bit emotional at finally being home after over a month. At 6:30 I got a phone call from the Oncologist on service for the week. She told me that it turned out that Eric WAS on the OR schedule for the following day at 1:30pm. She said they hadn't told Respirology that he'd been discharged so we'd just call this an overnight pass and could we be back at 9am the following day. Oh, and they wanted Eric to stay overnight after the procedure. What a kick in the pants. It's actually worse to get that little taste of freedom and have to go back, than to just have stayed the extra 2 nights. Eric was so upset and at bedtime asked when he can tell Respirology they suck and made a child cry.
Friday morning I woke up to an alarm so I had time to prep to go back to the hospital and woke Eric up so he had a bit of time to enjoy home before heading back to the hospital. I was sitting on the couch just after 8am when I got a call from our Nurse Clinician. She asked if we were still at home and I said yes and she said good, stay there until we hear back; the procedure doesn't appear to be confirmed. I continued to prep but waited to hear back. Just before 9am I got a call from the Oncologist that I had spoken to the previous night. She apologized profusely, said she didn't know how this happened and that their internal communication has been unacceptable in the way that it affected us in the past 24 hours, but that Eric was not in fact on the OR schedule for that day. We still had to go into the clinic for day 4 of the 5 days of IV chemo, but it was a quick in and out. Uncle Jon came with us since he and Auntie Becky are visiting for the weekend. In clinic, Eric's Oncologist was almost as annoyed by the chaos as I was and even gave Eric permission to yell at respirology. Additionally, he said that he did not require Eric to stay overnight following the procedure, as we had initially been told. It is possible that we will have to, if Eric needs oxygen after the procedure, but it is not a requirement if everything goes smoothly. Finally, he told me that Eric is on the OR schedule for Tuesday morning. At 10:15. His school that day is 10-10:30. Initially I was going to say no, that they needed to reschedule, but I talked to Eric and his first day of school is only 30 minutes out on the field in their teams, but they are not in their assigned classes yet, so we thought he really wouldn't miss anything and it was best to get it over with.
Saturday morning we had to go in to the hospital, outpatient treatment in the inpatient ward, for day 5 of 5 of the IV Chemo. Unfortunately, the ward is absolutely packed with not a spare room to be had. It's been like this the past few weeks so they had a bed set up in the teen lounge for Eric. Both Auntie Becky and Uncle Jon came with us this time. Another quick in and out, but this time Eric was able to be de-accessed, and stay that way, for the first time in 4 weeks and 2 days!!! He was so happy! Saturday afternoon Eric had big plans for Daddy to take him to Treasure Chest so he could get some new YuGi-Oh cards. He came home with a large bag and a big smile!
Sunday morning Eric was relieved to have the day completely free, finally! He's only got Sunday and Monday free, but he's enjoying every minute of being at home! Tuesday, we're back to the hospital early for a platelet transfusion, prior to heading to the Procedures (OR) floor for the bronchoscopy. Hopefully, Eric will be at school on Wednesday with his peers 🤞Joel is starting a new school next week as well, so wish us luck! This is a lot of change all at once.
