Long Story Short

Feels like forever since I updated... I'm mostly frustrated lately. This last round was tough and it felt like we didn't know what was going on a lot of the time. There seemed to be a big disconnect with the doctors, nurses, and team about Bash's care and letting us in on it.

I was feeding Bash lunch one day, only had a shirt and diaper on him as its way less messy that way, and our nurse came in to do an assessment and said he looked mottled to her. I said he was cold from the no clothes and needed to warm up - he looked normal to me. Well apparently she felt differently, and hey - great that she was watching out for him, but she told the new 'baby' doctor on service that day, who took one look at him, decided he was tachy (fast heart rate), and showing signs of infection?! Ordered a fluid bolus, a blood panel to check for infection, and started antibiotics (that means no passes home for us). I should have stood my ground, made them wait an hour, as I knew he was fine. Low and behold, two days later nothing grew from the blood cultures and antibiotics were stopped. I'm glad they were on their game but it was unnecessary and I felt like no one was listening to me.

We battled to get a few overnight passes since he was all clear for infection, not receiving any meds, and had high counts. We weren't discharged home like we had thought as our oncologist wanted Sebastian admitted because his immunity was expected to drop from the last week of chemo. Once his white blood cell levels dropped to zero, we were confined to our hospital room, twiddling our thumbs. Waiting is the worst.

I seriously could go on and on about these small little inconveniences that kept happening this round. They really don't matter that much by themselves but they kept building up and really had us feeling disconnected from the hospital team. We saw him as being happy and healthy (his blood counts were good, and he was feeling well) where doctors and nurses seemed on edge and uneasy over the smallest things. We questioned ourselves if we should be more concerned and cautious as well. Were we missing something? By mid week his counts started to come up again and we were in the clear. No fevers, infections, or virus's materialized despite the doctors worries thankfully. (Side note - I'm a tad OCD and disinfect the room three times a day haha).

Finally we were discharged! The weather has been warm and we got outside to enjoy it - forgetting about any other chores and things for the time. We needed this break and enjoyed being together as a family again - a small glimpse into the future and something to hold onto as we head back into another hospital admit and more chemo.

The BMA (bone marrow aspirate), the BIG one, was done this past Friday (March 24th). Sebastian also had his broviac line changed as his last one was blocked and not working properly. To get these two procedures done together so Sebastian only needed to be put under anesthetic once, was another huge headache I wont go too deep into. Basically there was a miscommunication on times between the two teams as different doctors do each procedure. We were told different places to go for admitting, different and wrong explanations on how the line was replaced, didn't know which doc was doing the BMA, and told different start times - even re-scheduled once. Just when we thought we had it all figured out, waited our allotted time in clinic, had gone up to the induction room for the surgery, they realized both teams had the time wrong and we were sent back down to wait more. Sebastian was so hungry he was nearly inconsolable. How do you tell a 9 month old he can't eat for ten hours?

We finally got him in, the procedures done, and enjoyed a beautiful weekend at home. We get the BMA results on Wednesday, and also get admitted for the next phase of treatment (Consolidation Phase), which goes ahead no matter what the BMA results show. 

Finding it really hard to stay positive, optimistic, and not complain about everything. Life seems to be at a standstill while we wait for the chemo to do its thing and the results of the last bone marrow biopsy so we have a better understanding of our path ahead. Everything I can cross is crossed. Trying our best not to think about it and worry. Cross that bridge if and when we come to it.