Yesterday Jackson had a platlette transfusion and then his pain started creeping back. His neck pain is returning and his mouth is hurting. We know that Mucositis is starting. Later in the day he started really complaining about his bottom hurting. The doctors said it’s the mucositis from the inside that is causing him severe pain. Kinda like how his mouth was the first round reversed inside his rectum.
His pain continued through the night so we had to start morphine again. Around Midnight he spiked a fever so we had to draw labs to send cultures off to check for any new infections. Good news is he hasn’t had a fever since 2am this morning!
Today he has slept a lot but not before getting a couple board games in. They are keeping up on the morphine so he is comfortable. Tonight they decided to put a NG feeding tube in. You can imagine how that went. When it was done he looked at me and said “Why mommy” with tears pouring down his face. When I explained it was going to help put food in his tummy to keep him healthy and strong, he said “Ohtay” - he amazes me more everyday with his strength and patience. The Tube doesn’t seem to bother him at all now that it is in.
They wanted to get head of it and get it placed before he started getting worse. They explained that feeding the stomach and allowing it to absorbed nutrients through the gut is what is best for Jackson and could also help his body fight the mucositis and even recover a little quicker. In the past we have always done IV nutrients so it didn’t go through the stomach. We are praying that is true and maybe this will be the trick to making him feel better through the remainder of this stay.
We are 13 days in and this is just the beginning of him feeling crummy. We are praying so hard that this is the worst of it and he bounces back quickly. But we are also prepared for it to get worse before it gets better.
It breaks my heart how one day he can be laughing, playing and feeling well and the next he is in so much pain and feels to terrible. Yesterday he wasn’t hooked up to anything and by today Fred (His medical pole) is loaded with all kinds of medications.
Even through all of this. Jackson will continue to tell us he is fine. Yes he fights the nurses when he has to get poked, or his dressing for his central line needs changed, or putting a feeding tube in. But he quickly rebounds without complaining. He is getting so brave and isn’t scared of as much. For example they brought in an X-ray machine to X-ray his chest to ensure the feed tube was placed into the stomach correctly. He laid nicely and helped the tech.
We are praying for no infections and comfort as he endures the next couple weeks.
Xoxo
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