Day 117

Today is going to be a big day, lots to do before we can get discharged tomorrow. You read that right, discharged! If everything goes well today we will be taking Miss Ryman with us to live with Julie and Corey! Sure hope they are as excited as we are :).

Today’s plan includes:
1) Getting 4 month immunizations (it is important to get these before transplant but we will have to keep an eye on her temperature over night).
2) Removing PICC line from her arm, we will be discharged with the one in her leg so we can do lab draws twice a week at clinic. It is also easy access if her ammonia goes up and she needs Ammonul again. The transplant team isn’t a fan of any line since it is a risk for infection.
3) Getting home nurse visits set up to do a dressing change once a week.
4) Getting clinic schedule set up.
5) Make sure meds and formula are on their way to Julie and Corey’s.
6) Doing a screening for Cystic Fibrosis, we haven’t mentioned this yet but Ryman got flagged on her newborn screening test that she could possibly have CF. We decided not to worry about that for the time being because CPS-1 was a much bigger issue. However, we need to know for sure before the transplant. Prayers that Ryman has only one genetic disorder!!!
I guess I could go on for a while but you get the point, today is a big day!
We will update you all with how the day goes… Hopefully tomorrow morning with a pic of Ryman in her second leaving the hospital outfit!
Much love, B
Corey came to hang with Ry one night while Jeremy was gone so I could grab some dinner. He and Ry watched the game, so cute.

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She is def a daddy’s girl.

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Morning floor mat fun, she is on so many calories and the team said she needs to exercise so she doesn’t just get fat. She needs muscle too! So they brought us a mat for her to play on.

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3 thoughts on “Day 117

  1. You have a lot on your plate.. Yet I feel like YOUR the doctor! Amazing and incredible strength that God has given you all… Baby RYMAN has def been creates for greatness!!! I can’t wait to see it! Wish I was there to babysit that sweet angel- or take you to dinner– lol they both work for me! Love ya girl and we are constantly praying! ❤❌❤⭕

  2. Praying that Ry’s testing is all positive, that the shots don’t affect her in a bad way, her numbers continue to stay low, that she gain the weight she needs, that Mommy and Daddy find the nxt few months to be as normal as possible and that they continue to feel the love and prayers sent out to them by friends, family and stranger alike. And God just hold them tight and strengthen them daily. I also pray a special prayer for Julie and Corey, bless the 2 of you for being there for Brandy and Jeremy. You are loved by people you don’t even know!

  3. Good for discharging from the hospital!! With her obvious weight gain, I wouldn’t worry *too much* about CF. Most CF children have trouble gaining weight because of pancreatic malfunction that leads to low/no lipase which means they can’t absorb fats. I think only 10-20% don’t have GI/pancreatic problems. So even though she was flagged, the odds are in your favor. 🙂
    She’s so darn cute!!

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