12.13.21 Trach Floor 47

Back at it on Monday! Busy morning talking to different consultants about next steps. 

-Neurology: We are working on moving seizure meds forward. Started another one of her enteral ones back today and took the first decrease on the Iv seizure medication. 

Nutrition: Adjusting the timing of TPN to hopefully work better with her body. They would like it to run for 18 hours with a 6 hour break, but that is a long break when she is used to round the clock fluids. It is causing us some issues with urine and our cathing schedule.

Rehab: Spoke with rehab about moving her diazapam for dystonia from IV to enteral and again trying to tweak timing to logistically work at home. Currently she is getting meds so randomly throughout the day and night. Nearly every hour. We’re trying to reduce down the number of flushes to make it easier on her body. And our sanity.

Urology: Asked the team to round back with urology on a standing med to keep UTIs away. She has been having one every 6-8 weeks and when we take her home with a central line every fever (or hypothermia) means we have to go back to the hospital.

Endocrine: Bone scan showed low bone density, which is what we expected. We are waiting to hear back from endocrine about moving forward with infusion for bone mineralization. 

Case Manager: Lengthy discussion with the case manager about going home with TPN and the central line. One of the biggest concerns right now is that there are supply issues with TPN homecare. No one us willing to add a new patient as they need to make sure that they have supplies for their current patient load. If supply issues change, Providence is willing to send a nurse to our home to do weekly dressing changes on the PICC line. Currently they will not take her on though. When it is the only reason she is still inpatient, the case manager thinks she can convince Children’s homecare to take her case, but only if we either switch to a tunneled central line on her chest or go in for weekly dressing changes to the main campus. Not worrying too much yet, but it is unclear how this will iron out as we finish working through the other obstacles keeping us inpatient. 

Pulmonary: Had a great visit with the Pulmonologist this morning. We talked about the decrease in Aimee’s wakefulness, especially over the past 6 months. There is a medication called Modafinil that she thinks may help signal Aimee’s brain that it is time to be awake. However, in order to get it, we need to prove that she has hyper-somnolence due to a medical condition or ideopathic hyper-somnolence. Either way, she can’t do any of the tests to prove it. So, the doctor would like us to chart every 15 minutes if Aimee is awake over the next 7 days. Hoping that if this med helps Aimee to regain alertness that we will be able to convince insurance to cover it. It is not crazy expensive (300-600/month), but would not be an option for us out of pocket at this point. Another option would be a stimulant medication like Ritalin. 

We also discussed decreasing the trach cuff when Aimee does have awake periods. The cuff is preventing leaks from the vent and also keeping upper airway secretions from creating issues down below, but it is also preventing Aimee from vocalizing at all. So so sad to see her try to make noise and not be able to do it. Really hoping that we will be able to bring the cuff down at least during active periods. 

Discharge RT: Our team of 4 being trained on trach care is finally approaching the finish line. We have been having classes twice a week most weeks and should be done by the end of next week. Today we had the second round of Trach emergency and CPR. It was not an easy one emotionally for any of us I think. Many difficult situations to consider and to make plans on what would be best for Aimee. It is right to process these scenarios ahead of time, but also heart piercing.

Aimee facetiming with Daddy this morning. 

Good to come home and fill my cup with laughter and snuggles.