Day 262, Speed bump

Today was the annual Christmas Concert at the kids’ school. Amber, Ryan, Brianna, and Marie have been practicing their songs for weeks, and were ready to get up on stage. But, Amber wasn’t destined to perform today.

Yesterday, we had a follow-up with the opthalmologist. As the exam was wrapping up, and she told us that Amber’s eyes looked great, she took one quick last look and just sort of made an off-hand comment to the effect of “huh, she seems to have a very slight difference in pupil size”, but didn’t think it was anything of concern.

This morning after breakfast, because of that comment yesterday, Caron was looking at Amber’s eyes and noticed that the pupil of Amber’s right eye was a little larger than her left. On one hand, this immediately set off alarms for us both – when Amber was first brought to the ER at Backus Hospital, 262 days ago, the first thing Dr. Adams noticed was her enlarged right pupil; and then, during our next 50 days at CCMC the pupils were checked all the time for signs of pressure in the brain. On the other hand – we have witnessed this poor little girl go through so much, physically and mentally, that it can be tough to determine the right level of concern. But, even with the news this past week, this difference in the pupils was unexpected, so we called CCMC. After a quick exchange and deciding that while it /might/ not be anything of concern, it’s better to err on the side of caution, I brought Amber up to the ER at CCMC for a quick check, while Caron brought the other three children to their concert.

Once at the ER, they immediately start checking out Amber’s eyes, getting her vitals, reviewing the latest notes from MSK, and I end up repeating the story of the past 262 days several times as each new person enters the room, as it is probably faster for me to tell the story than for them to read the encyclopedic volumes of notes to get up to speed.

After some challenges getting the most recent MRI from MSK, they decide to put her through a quick CT Scan. Unfortunately, they do see some unexpected changes in the tumor/mass, which is causing some irritation and swelling, putting some pressure on the brain.

So we start discussing options while waiting for radiology to be ready for us for an MRI. Dependant on the results of the MRI, we might be considering something as simple as a steroid to reduce the inflammation, or might be considering immediate surgery. Or, possibly the worst case, doing nothing at all.

So then off into the MRI for the one-hour scan. As always, Amber is a trooper. She doesn’t want to be sedated, no movie or music, doesn’t even want ear protection (but she does eventually have to give in on that one).

Following the MRI, Amber has been admitted to the PICU, where we are right now (about 11PM). Amber is sleeping, receiving a steroid drip. We will determine in the morning if this works and gives us the time to develop and pursue a plan (as we have been anticipating), or if we go right into surgery tomorrow.

It’s rather surreal to be back here in the PICU, where we spent the first two weeks of this journey, starting 262 days ago. Nurse Alex is here, as well as Nurse Steve and Respitory Tech Craig. There are new faces too, of course, but these familiar faces are weirdly comforting. We wish we weren’t here at all, yet there is nowhere we’d feel more “comfortable” right now.

It’s going to be a long night. We hope that this is just a speed bump on the way to a better plan, but we won’t know till morning. Until then, we pray. There is nothing else Caron and I can do; this is in God’s hands. So as we have before, we pray that He gives strength and clarity to the skilled medical professionals who are determining the best course of action for Amber. And we pray that Amber rests comfortably and that God strengthens her for whatever comes next. And Caron and I will figure out what’s next after we hear from the team tomorrow morning.

13 thoughts on “Day 262, Speed bump

  1. Hi Everyone,
    So sorry to hear that Amber has to be back in the hospital. If I get released from UCONN soon I will try to contact you to see if you need anything at all from anywhere and I can drop it off on my way home.
    Take care, you are all in my thoughts and prayers.
    Reg Patchell

  2. Amber and all of you remain in my daily prayers.i hope God offers strength as you make decisions in the next few days! ❤️

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