1.20.17 Learning

Today is a good day, so today I will write to you. We brought Aimee out to the couch and watched a movie all together as a family. First time we have been able to hold and snuggle Aimee in 3 months. It felt perfect, yet very different with how stiff and tall she is post spine surgeries. 

There have definitely been some tough days. Weird symptoms that don’t add up together and that come and go. Like some blood in her farrell bag (drainage from her stomach). Random fevers. Sometimes needing cathing all day, sometimes not making urine, and sometimes doing it all just fine herself. Crying days where pain meds don’t seem to help. J-tube clogs that have caused us to lose precious hours with fluids. (Thankfully we have been able go get the clogs out ourselves so far. If we ever can’t, she has to go into Interventional Radiology at the hospital for a new tube.) Days with lots of suctioning and some congestion, then days with a dried out tongue. Days with multiple bags full of air drained from her stomach. Days with lots of discharge. We’re doing our best to learn and follow her cues. 

In really good news, the wound continues to heal every day. We are changing the dressing and excitedly seeing positive progress each time. 

We are working hard to get documentation together in the hopes of sending Aimee’s nurse to school with her. It sounds like it may be a battle, but at this point, we don’t feel that it is the right course to send Aimee with an aid/para only. Thankfully the hospital Nurse Care Coordinator and Medically Complex Care doctor are up for writing letters to the district detailing Aimee’s needs. 

Speaking of the nurse, it has been such a blessing on the days she is here. We have been able to go grocery shopping with the boys, take them to the library, catch them up on dentist and doctor’s appts, and attend church! Aside from having days where I can be cleaning or doing activities where Aimee is out of sight range. It is such a strange and beautiful freedom, for which I am beyond grateful.