9/13/18 BMT Day +133 Pain Management

A lot is going on here at the BMT unit. My little girl is making great strides!

Today Reese’s steroids were dropped to 1.1. This is HUGE. Please say a prayer, the doctors believe her previous two flares were resistance to under 1.2. The next couple days will be telling. Her NG feeds went up to 9ml an hour and she is eating A LOT by mouth. Her little menu has grown to include NINE items, including that watermelon she added yesterday! Today the doctor okayed HUMMUS for tomorrow!! He also said ok to edamame (“PEAS”!!!! …as in peas & cheese!) on Saturday and then avocado on Monday. The trifecta, she is thrilled! They don’t think she’ll actually be able to absorb all of that, but they want to keep her in the food game mentally, and those are her favorites.

We have been keeping an eye on the TMA this week as Reese’s tac was taken down completely. We are looking for signs that it is improving from the removal of this drug. We want her hemoglobin and platelets to stabilize and stop dropping, no longer requiring transfusions. Today both of these held steady, which is a step in the right direction! I would love to file TMA away as a small problem that was handled swiftly and effectively. I think I’ll have my answer, soon.

As you know, Reese is currently a diabetic and she has blood pressure problems- all from the steroids. She had an echo done earlier this week that showed a little fluid around her heart as well as an over stressed situation. Apparently, her two blood pressure meds weren’t doing an adequate job, so a third was added to her regiment. If we can just get those steroids down to a safe(r) level, and fast, so many of her problems will start to melt away.

The pain team has become a regular presence in our room this past week. There have been quite a few medicine changes being done as well as other “helpers”. I can say that we are finally getting a better handle on Reese’s pain. It was explained to me some time ago that Reese’s pain is reminiscent of food poisoning… except hers has lasted 3 1/2 months. I can’t even imagine and you shouldn’t try. When I have had food poisoning the thought that goes through my mind is, “just a few more minutes, you can do this, it’s almost over…” Today, Reese only needed one extra pain bolus in each shift. (Her record is 10.) Pain management was explained to me in a very simple way that has helped me wrap my mind around their goal. I was told that Reese’s pain ebbs and flows… there are highs and lows, periods of great pain and periods of little to no pain. I know this. They want to treat the great pain but not over medicate the periods with little pain. So the goal is for her pain meds to have a small amount of breakthrough pain throughout the day, that can be treated with a bolus. If there isn’t breakthrough pain, then they are over-treating the times when her pain is little to none. Reese’s other helpers are the TENS unit and her orange essential oil (that she wears in a diffuser necklace around her neck.) When Reese has breakthrough pain she goes through a checklist with me, trying all of her helpers before asking for a bolus (more pain meds.) She turns on her TENS, smells her orange, goes for a walk, tries to eat… all of these tools in her toolbox have eliminated many, many boluses. Thank god for that.

These past two days my friend Anna came to visit again. It is very hard to be away from so much, I know that all of Team Reese feels that way. My parents, Nonnie and Poppy, and their never ending devotion. My husband, my kids, who have been asking more and more about home, about our yellow house. We all feel a little homesick, even though by my definition, home is where my family is. But I have to say, seeing a smiling face like Anna’s, here is San Francisco, reminding me of the life I’m trying so desperately to get back to, is pretty damn cool. I am so fortunate to have friends and family I love so much who travel across the county for us. Pretty soon we will also be traveling across the country, right back to all of you.

A couple days ago Reese found a spot of sunshine on her play mat and she threw herself across it. Reese hasn’t been outside, feeling the warmth of the sun on her face, since April 22. When I asked her if she was sunbathing, she said, “I’m hugging God. To say thank you. He made my JMML go away.”

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