Friday, March 24, 2023

Day + 15 Not a Good Day (but yay for a visitor!)

Day + 15  It's going good, and bad (not bad ... maybe sad) at the same time. All the things that are supposed to happen are happening, but some of those things that are good, are hurting Mia in the process of making her own cells (totally to be expected.) So it definitely is sad to watch because there is nothing I can do. She doesn't sleep good at night, even with melatoin, so as soon as she got up this morning, she wanted to lay on a different bed with mom. She wanted a mommy snuggle, right Mia? She's just looking any type of relief. 

The filgrastim that she's on to help stimulate the body to make white blood cells can cause your bones to ache, like bone pain, joints, and all the things, which is what we want, but it just doesn't feel good in the process. She has had something happen with her neck on the hickman side. We *think* it could be her hickman line possibly at a weird angle going up her neck or maybe touching a nerve, or maybe a muscular thing? So that's been weird. Now that is causing it to hurt when she swallows, making it difficult to eat & drink. (No, it is not mouth sores. She hasn't had any of those thus far because she's a pro at her 4x's a day mouth washes.)  Go team! She is also having just a weird time with her ... peeing. I'm just going to leave it at that but upping her fluids today I think has helped.

After this rough start to the morning, the neighbors next door brought me a huge coffee and egg bites from Starbucks, ahhhh thank you Uribe fam <3 You have no idea how much this coffee was needed. I'm so thankful for little things like that which are big things to me.

Platelets were 14 this morning (labs are done at 5:30 / 6:00 am ish every morning) so here she is getting platelets. She keeps saying how she thinks she's using up all the platelets ... but Mia girl, you are so deserving of them too. Besides, mom and dad will be sure to donate them as soon as we go home to help do our part to replenish the platelet supply. Right Dad?

Mia got another unit of blood today ... this mornings hgb was 6.9  (getting too low in my professional mom opinion) so no wonder why she feels just absolutely ... destroyed and can't keep her eyes open. She was able to keep a few bites of a Starbucks bacon gouda sandwich down, so yay! After Mia's blood transfusion was over ... she had a special surprise.

Her nurse Miss Christine (the famous one who shares the same bday and has been with her for over 20 years) came for a visit. Mia was so happy to have all her people there, Nurse Megan, Miss Christine, and Nurse Rachel. (Just missing Hannah ... but it's ok because she had a really good excuse for not being here, haha!)  

Mia got to show Miss Christine her walk route ... to the big window to see the outside world (wish Mia could go out and see the sun ... soon Mia, soon) then on to complete a lap in the Hem/Onc/BMT unit.

Way to go Mia - even 1 big lap is SO great to get the body moving. It is so important.

Back to Mia's weird neck / swallow issue ... they did an x-ray but I don't think they saw anything that could be causing that particular 'pain in the neck' area. She did end up getting 2 oxy's throughout the day (which did nothing for the pain) and at night time they are giving her some morphine. I'm just hoping she can sleep. She said she would rather take out the hickman line and get iv pokes than deal with this, it hurts that bad. So, if you are reading this, please say an extra prayer for sweet Mia that she could get some type of relief for this weird thing happening. She didn't eat dinner and hasn't drank that much water because it hurts to swallow. They did bump up her fluids so I hope that helps too. 

Let's GrOw cells ... Mia needs you now. She is struggling, but is so kind and thankful to all the staff that come in to help her. I'm so proud of her, she just needs to keep fighting through this rough part. It can only go up from here. I honestly don't know what we would do without all these kind nurses and all the staff we see on the dialy, taking such good care of sweet Mia. We are blessed to be here for sure.

Prayer Request

- To fix this neck/swallow issue that is making it difficult for her to eat and drink.
- That her cells engraft ... and start multiplying and producing ALL the cells.
- Wisdom and thankfulness for the staff taking care of Mia. <3
- That all things will work for good in God's timing, not ours.

Thank you so miuch for lifting Mia up in prayers!


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