During our second stint in ICU, all of Johnny's doctor's from 9 came to visit him -- strictly social visits to see how he was doing and to say hi. Especially Dr. Nicholas, our resident who worked even longer, crazier hours, who stayed late many nights to get the 'new plan', when she could have easily said 'screw it. my shift is over, i'm tired. i'm outta here.' and who came by after her vacation to say hi before she started her next round somewhere else. These folks love and care for each kid -- including Johnny.
No matter what team you are on, they get together to discuss patient histories and even stay in touch for counsel on difficult cases (hmm... I wonder who that could be?). Our new HemOnc team is fresh faced, happy and full of energy, with a goal of making Johnny strong and healthy. However, I think Johnny's fragile/complicated health history may have been lost in translation. I know our previous doctors gave a TON of info about Johnny and how tricky he can be, But...
Today, the new team was throwing around the idea of sending us home before the weekend and cutting back the ampho to 3 times a week -- not completely new ideas, both of which are great --but still terrifying to us given how quickly Johnny's health changes with every tiny change. The CT shows significant improvements and the left lung looks completely clear! Nothing in the sinuses or gut either. But...
New HemOnc Team: 'Since we don't know what the spot is on the right side (everyone is 95% sure it's fungus), and we can't confirm without a true open lung biopsy -- maybe we can fit that in on the 7th when he gets his LP and BMA...'
Me: 'WHOA! Hold on cowboy -- open lung biopsy? Ahh, hell no!'
(Johnny shoots me the Mom-don't-embarrass-me look of horror)
'Why? If we are '95% sure it's fungus', almost done with the full course of fungal/bacteria treatment, everything is improving/gone, given Johnny's history -- why do we need to cut him open to find out, 'yep, it's fungus and it's healing nicely'? I'm NOT comfortable about that plan at all. It's not worth the risk.'
I could be over reacting a bit, but I'm pretty sure the previous teams will back me up on this (at least I hope they will). The new guys seemed responsive to my sudden and loud outburst and will probably consider my perspective. I brought Sophie home tonight so the boys could have smelly 'guy time' and watch guy movies. When I left I gave Mike strict instructions to be FIRM with 'NO open lung biopsy!'
The cool thing is the docs are going to try and schedule another port placement on Monday when Johnny gets the other procedures -- minus the open lung biopsy of course. Then we can get rid of the PICC line and Johnny can take a real shower or even go swimming. Don't get me wrong, these guys have Johnny's best interests at heart and really want him well -- we even talked about the next block of treatment and when it might start. There will be at least a week or two between the end of this block (on 7/7) and the beginning of block two. Johnny's ANC has to be at least 750 and platelets 75 or greater. Because our new team is so forward thinking about Johnny's treatment options... I thought I would push the envelope a little...
Me: If Johnny has a week or two between treatments, and if everything looks really, really good, what do you think about Johnny traveling?" -
NHT: You mean on a plane?"
Me: um, yeah..."
NHT: Sure! If you time it right, and if he's doing ampho every three days (M/W/F), you could schedule a long weekend -- and be home for treatment on Monday!"
Johnny's eyes lit up and I could see a smile starting to form but he was trying to hide his excitement and be cool about it all.
I know, I know, your probably thinking, 'You don't want to find out what the 'mystery mass' is, yet the second he starts to look good, you want to take him to CA to go skating? Where are your priorities?'
At this point, I'm not quite sure. But I am unbelievably excited that we are even talking about the future and the slightest possibility of Johnny skating anywhere! Cheers to the new team! ... but not the open lung biopsy...