09/10/2023
It has been a long past couple of days. Thursday Summer was acting a little fatigued as the day progressed she was becoming unresponsive and not wanting to wake up with me calling her name quite loudly and doing sternum rubs, she wouldn’t stay awake very long normally when this happens, it typically has to do with her shunt, so I loaded her in the car and drove her down to CDH once arriving and waiting in line to check in peroxygen was kind of bouncing back-and-forth between high 80s to low 90s. They got us to the back very quickly to a triage room within just a couple of minutes. She was taking only approximately four breaths per minute they wound up immediately making the decision that to protect her airway that we needed to put her on a ventilator immediately amazing medical team acted very fastly and secured that airway battery or blood test, as well as x-ray and CT scans to rule out any type of infection as well as a shunt malfunction. Still uncertain of what exactly is going on with her, they were assuming that we might need an MRI so because of that they decided that they had to transfer us downtown to Laurie Childrens so they would be able to reprogram her shunt. They did have her heavily sedated so she would not pull out her tube or startled. Lori‘s personal transport team of six people showed up to transfer us downtown. Our driver was amazing. Getting us downtown in just a short hour drive in awful rush-hour traffic even with all the idiot drivers not even attempting to get out of the way with lights and sirens blaring. Once arriving to Lori, we were admitted to the PICU the team of Doctor there Decided to slowly start weaning her off of all sedation meds so they were able to check her mental status. She started to wake up and was able to remain calm even though not extremely happy to have a tube shove down her throat, but who would be she was able to sign to me it was a very long night with people in and out of the room. Probably every 15 to 30 minutes. Needless to say this mama only got two hours asleep but luckily she started to be able to breathe over the machine and take more breaths on her own by 5 AM, they were able to excavate her and she came off of the ventilator. Unfortunately we still have zero answers to what caused her to go into respiratory distress through all the labs and test they put her through came up negative but she is definitely a fighter. Because she made such a quick recovery, they discharged her today and now she is home resting comfortably. Frustrating, not having answer and not knowing what caused this, and not knowing what to look for.
