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April 2, 2019

Day 2 of chemo. She has slept ALL DAY. She was up long enough to open her eyes and mouth "dada" and then she was back out. Her vitals are steady though, so no concerns there. ‍‍‍‍‍‍ ‍‍

No therapies today (PT / OT / Speech) because she's just too tired. They upped her Ativan a bit, as it seems to have the most success with anti-nausea. And they've switched a few of her meds back to IV, just so she keeps them in her system. (The switch FROM IV meds to stomach meds is considered a step in the right direction / weaning process. So it's technically going backwards, but it's the right choice.) ‍‍‍‍‍‍ ‍‍

Yesterday they took her down for a "Milk Scan". I guess that's a test to determine if the stomach is functioning correctly (if there is any reflux, what motion the contents are taking, etc.) It uses a small dose of radioactive material mixed with milk, and then a gamma camera is used to see what's up. They said nothing remarkable came out of the test, which is good, just a small amount of reflux. Nothing near large enough to cause her issue. ‍‍‍‍‍‍ ‍‍

So last night they stopped her feeds completely, just to see if she could get a break from the vomiting. Since they stopped, she has not thrown up. I believe the plan is to keep her feeds off so her stomach is completely empty, and then "as early as tomorrow" they will take her in for a procedure to push the feeding tube a bit further into her system, so it bypasses the stomach (so she won't have stuff to puke up). I don't believe this involves any incisions or anything: just a different tube and maybe some imaging. ‍‍‍‍‍‍ ‍‍

But Reed talked to the oncology doctors today, and they aren't concerned. Other than being miserable, this is what they generally expect a 4th round of chemo to look like. They don't believe there is any smoking gun causing the vomiting. They say it's likely partly due to a huge concoction of stomach-irritating meds; the fact that she's more alert and the trach is irritating; her constant over-production of mucus; and the chemo in general that is known to make people barf. They say they see it all the time on the oncology floor (where she'd be if she didn't have a trach). The PCU staff just doesn't deal with vomiting as often. So, oncology isn't concerned. They just want to make sure she gets all her calories and meds, and they want to keep her as comfortable as possible. ‍‍‍‍‍‍ ‍‍

So that's it for today. She's just too exhausted to be awake. Hopefully the procedure tomorrow gives her some relief from the vomiting. ‍‍‍‍‍‍ ‍‍

Oh, and as a totally random side note... you never have enough videos of your kids (or any loved one, for that matter... parents, pets, etc.) I've lost so much lately, and the videos I have are everything. I've watched every video of Julia a hundred times... every movement, every outfit, every facial expression, every word, has been memorized. And it wasn't enough. The immeasurable value of these videos isn't realized until you know you'll never take another. As I did when she was put on hospice in January. (Thank GOD things are going a different direction and I might be getting a second chance!) But I always found plenty of times during the day to get on Facebook, or Reddit, or play some time-wasting game on my phone. If I had just taken another 1 minute video for every time I did that... I'd have hundreds and hundreds of memories. So if you have the ability to... take more. ‍‍‍‍‍‍ ‍‍

Tonight's picture and video (in comments) are from yesterday morning. She played peekaboo again for the first time!! Like many 2 year olds, this was her FAVORITE game to play before she got sick, so it was WONDERFUL seeing her be playful again <3 <3 <3 In the picture she's hiding behind tiger =)Hopefully some of this re-found spunk comes back next week after this round of chemo.

YouTube: ‍‍‍‍‍‍ ‍‍

It is the most amazing thing ever watching Julia slowly return to us.

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If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3

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Erin McGahuey
Erin McGahuey
Apr 03, 2019

I hope they are just going to give Julia a G/J tube. The J-tube (jejunem) skips the stomach. They just change the G-tube button for a G/J.

I love watching the videos of Julia. The one yesterday with Gabriel was so wonderful!

I rejoice with you for every tiny step forward.

Praying for Julia, Mommy and Daddy, the family, and the medical team.

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