Day 195 - Another Busy Tuesday

Tuesday, July 13th, 2021

We gave him a glycerin at 6am and he then had a massive diaper around 8:30am, we then changed all of the bedding. At 9am he projectile vomited twice, we again changed all of the bedding and did his trach care. After that we had people stop in one after another. First the discharge coordinator stopped by, then ENT, then OT/PT, then the Pulmonologist, then the Doctor on-call, then the Speech Therapist. It's been non-stop and he is now just taking a nap at 1pm. We decided to put him on an acid reflux medication, Prevacid, to help with the vomiting. It could take up to 4 days for a full effect. Prevacid decreases the amount of acid in the stomach. It blocks an enzyme in the stomach wall responsible for producing the acid. This prevents proton pumps in the stomach from releasing acid. Decreased stomach acid gives the stomach and esophagus time to heal.

Next week we will try the LTV since the Doctor next week is a big fan of it. James doing home vent trials is not "exercise" when he can only handle for less than 10 minutes. It's more like torture. If he could handle closer to our hour that would be considered exercise for his lungs, but right now there is a chance for more atalectisis 

At 2pm, Mom and Dad had a meeting scheduled in a conference room with the discharge coordinator, social worker, and a charge nurse to work with us on checking things off the discharge checklist. First thing on the checklist to discuss was insurance, Social Security Benefits, and Medicaid. This pretty much took up the whole meeting! It's really confusing and there is no one that really understands it 100%. We also slightly touched on staffing for Home Nursing. The Discharge Coordinator had reached out to the 2 local staffing agencies to see if they had anyone for a trach and G-tube baby and if not, if they would be able to recruit. Essentially they both said they wouldn't be able to help. 🤯 This means that Mom will not have any help from nurses when we are at home. James will need 24/7 supervision being ventilator dependent. This is a little scary. And just to clarify, Cigna will cover a hundred days of Home Nursing but the agencies can't staff the nurses. Even if we end up getting approved for Medicaid after discharge and they cover 100%, it won't matter because the agencies can't staff the nurses. This really is mind-blowing to Mom since she has been a recruiter in staffing for hard to find, last minute roles. When she worked for an agency they would never turn down a job. 

We also met with the Nurse Manager to discuss concerns we had. Then we had a consolt with GI to discuss James' issues with the reflux and constipation. Suggestions were made but essentially the picu team did not agree with her.

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these emails to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com