Hi all. Well, since we were discharged a few weeks ago, things have been pretty stable. Ollie has lower energy days and days where he can do more than other days. Appetite has been up and down but mostly he has been eating ok. He’s been getting transfused regularly.
Yesterday he slept pretty much all day on the couch, never ate. Late afternoon we noticed he was breathing very fast. Eventually he spiked a pretty good fever. We called the on-call palliative doc and he came over. In addition to the fever, Ollie’s respiratory rate was in the 40’s (normal for him mid-20’s), his heart rate was in the mid-150’s (normal is 100) and oxygen saturation was in the 80’s (normal is mid-90’s). The breathing stuff is what freaked me out. It’s one thing to have this idea that you will just keep them at home for the most part, but when they are out of it and having breathing difficulty, that shit is scary.
We decided that since he’d still been pretty ok just the day before, he could benefit from being checked out. The hospital did cultures and CBC, and maybe broad spectrum IV antibiotics, and transfusions could perk him up.
It is so nerve wracking to sit in a room with a monitor and see those numbers go up and down, with nurses rushing in when alarms go off, trying (and failing) to get your child to take oxygen. Eventually we asked them to turn off the monitor. We are so lucky to have the amazing PAC Team we do; the on call doc came right down to the ER and talked to us at length about how our decision to come in was the right one, and gave us perspective on the importance, or lack thereof, of oxygen saturations. Apparently in studies, some people who experience low oxygen say they feel fine, whereas some who’s O2 seats were 100, felt bad. Bottom line is, if a palliative patient has low sats but they freak out when you put a mask on them, then it may not be worth it. Morphine and Ativan can do wonders to ease the feeling of breathlessness.
Anyway, Ollie had a chest X-ray in the ER, then we got up to the ward around 11pm. His BP was also low, which can generally be solved by giving fluid, but he is already fluid overloaded, which contributed to his breathing issues. So, a fine balance has to be achieved. Overnight he received blood and platelets.
In the morning, his breathing and HR were better (blood products can do that) but he was so swollen from fluids. Ordinarily they would give Lasix for this, but that can compromise BP. Eventually his BP stabilized. He was given albumin to coax the fluid out of his tissues, then Lasix to make him pee (and he did, almost a litre), then more platelets.
The chest X-ray was “hazy”. The docs believe this shows that the JMML has infiltrated the lungs, which is common for JMML. His white blood cells and blasts had doubled from Tuesday to yesterday, also a sign the disease is progressing. This was very shocking to us. We didn’t expect that things would move so quickly, so suddenly. I didn’t think I could feel more shock than I already have, but I did. I didn’t eat for almost 24 hours, and barely slept last night. I could feel a knot of anxiety in my chest all day. I was fortunate to be able to speak to the psychologist for an hour today. It helped so much to have a safe space to express myself and “let go”. I was reassured that we are doing the right things.
So we are home. Ollie is hooked up to a little pump that delivers a continuous, minute amount of morphine, but has a button that will allow for a bolus of a larger amount up to every six minutes. He is on oral antibiotics and an additional medicine called hydroxyurea, which may help slow down the proliferation of blasts.
Ollie has been playing video games since we’ve been home, and being quite chatty. He’s trying to eat but not liking anything he tries.
Ollie is calling the shots (not that he didn’t always). I don’t know how much he’s going to want or be able to do from here on in, but we will treasure every time he speaks, wants to eat, asks to something or see someone…the line that defines a good day keeps moving.
All that support and love we’ve been receiving, well keep it coming. In the days/weeks ahead we will all need it. Pray for wisdom for us to make the right choices and comfort and peace for Ollie, Jack and Stu and I, and those closest to us.