Day 209 - James Still has a Temp 🤒 & Mom is Recovering
Tuesday, July 27th, 2021
Mom hasn't been able to see James since Saturday. 😭😭😭 Her covid test did come back negative which is what we thought would happen, but she is still sick with a viral cold. We don't want James getting any worse so Mom is going to take it day by day. She is going to get IV therapy tomorrow at our local wellness center to help speed up things up. The initial $60 CVS run on Sunday was a basket full of Vitamin C, Zyrtec, Flonase, Zinc, Elderberry, and a Neti pot. Couldn't tell you what has helped! That's the way we typically like to do it, adding in so many variables that we don't know what's working. 😆
10:00am Nurse called with update:
Essentially no changes. James had a better night.
Mom checked the online portal and it says he weighs 7Kg now (15 pounds and 6.92 ounces). It shows today's date at 4:30am. She doesn't know why they are insistent with being Hands-On in the middle of the night as soon as she is not there. She also sees that the bloodwork was done at 1:30am on the 26th. 😡
🤳🏻 After 5 days of trying to reach the Department of Children and Families Mom spent another 2 hours on hold and finally someone picked up today! Mom explained what she was looking to get done and the man let her know that she had been calling the wrong number (this was the number give it to us by our Discharge Coordinator). He ends up giving Mom a new phone number for FL Medicaid Managed Care. All of this to change our Medicaid plan to make sure getting the right coverage for James. We are currently with Humana and it has been suggested that we change the CMS. Mom went through an initial screening process and application for James to change from Humana to CMS. She thinks that we will get approved no problem but Mom still has to call another number to now schedule a 2nd screening to see if he passes. She also set us up on the Medicaid member portal online.
4:30pm Dad went to the Hospital 🏥:
Unfortunately it looks like James has scratched his face. Mom has not been able to be there to file his nails. Did you know that nurses are not allowed to file nails? It is forbidden. 🤔
The nurse said that James had a bowel movement around 2pm, his last PRN morphine was yesterday afternoon, and his highest temp today was 99.2. 🤒 They did not do an LTV trial today due to his higher temperature. They will try again tomorrow depending. James ended up having a red dots that were flat almost like a rash on his leg. We don't know what that is from at this time. The nurse things that I could be a rash from a virus. If his temperature doesn't come down they will do a nasal swap to check for infections. As of right now, they're not convinced to do any blood work or a catheter.
Next step would be sputum culture (from the trach) and nasal swap. Then if needed would be blood and urine testing. 💉 😥
Thank goodness Dad has a flexible schedule. We don't know how other families do this. We are lucky.
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