We are heading to bed tonight still anxiously awaiting the ok to head home but we are so very close! We can go home as soon as they get her Omadacycline (antibiotic) refill sorted out.
They had to resubmit a prior authorization to insurance, not exactly sure why. Luckily, they were able to get it into them and approved though the insurance company today. We are now waiting for the pharmacy to get the medication in stock. Not sure how long this will take. They have handed off her care to the Texas ID team in Dallas. We will be following up with them shortly after we get home.
Today we met with GI and they said she is doing great. Her GJ tube was removed. It was pretty painful but she did it and it’s over! She is still down in weight a little bit from her admission so we will keep watching that and making sure she’s getting enough protein and calories. Her scar still isn’t 100% healed/closed yet. They gave us a new wound care plan. We will change it twice a day and see if that helps it heal the last few areas.
Her labs from Monday showed her platelets were back into the 1,200 range and that her ANC is back in a safe range so they have restarted her Hydroxyurea (chemo med that kills her platelets) at half the rate she was at before. She will get labs drawn again Monday (here or in TX, not sure yet) to recheck her levels.
We saw Endocrine yesterday – she’s doing great. Her numbers are looking beautiful majority of the day. We made a few minor tweaks to her rates but overall, they are very pleased with her levels. Her A1C is 5.1.
We had a wonderful 4th of July. We started out with a movie. Avery got to pick and we saw Ruby Gillman, teenage kraken. It was a pretty good one.
Then, that evening we had a nice picnic and played board games on the Ronnies house rooftop waiting for the fireworks to start. There was lots of neighborhood fireworks around so we got to see a good amount of them!
Today, Avery’s highlight of the day was coming back to the room after getting her tube removed and immediately laying on her tummy! She is SO excited to be able to lay on her stomach again!
This afternoon, the girls get their own segment on the Secrest Studios TV channel – they taught a TikTok dance. It was… special! They had a great time and I’m glad we got to say goodbye to our friends in the studio. These girls have loved getting to be apart of all the great activities they offer these kids.
We went to get ice cream to celebrate getting all her tubes out afterwards. We finished our last evening with Grandma by playing a tense game of Trouble and getting some stuff packed up! Grandma heads out tomorrow afternoon and Jarret gets back from his work trip late tomorrow night.
Tomorrow is Jarret’s birthday!! Please help us celebrate him even though he will be working and traveling all day. We are hoping to celebrate him Saturday night with a nice dinner. If all goes as I have planned (haha… like that actually happens!) we will head out Saturday late morning and make it to Memphis (about 7.5 hours) around dinner time. We will then finish off the rest of the drive home Sunday. Stay tuned for what the ACTUAL plan ends up being!