Still Progressing

Aubree is back on full feeds and doing great with that. She has also went down on the pressure from Cpap of 8 to 6 and doing great with that as well. From a pain management standpoint, the day before yesterday was pretty rough, and she was having to get IV morphine rescues throughout the day. They had her on Tylenol and oxy, but it didn't really do much for her pain. Yesterday, they switched her to oral morphine, and it has been the best at managing her pain without making her a zombie. Yesterday with her pain finally under control, Aubree played with toys, was laughing and smiling, and was kicking and playing with her legs and feet like crazy. We are so happy to be getting our girl back to normal.

In other news, yesterday dad and I went to reposition Aubree in the bed and her silver impregnated tank top (which she wears post op to help reduce the incidence of infection since silver has anti microbial properties) and bedding was pretty saturated with yellowish liquid. Upon investigation, her surgical site and dressing had become saturated and started leaking. After an orthopedic resident came, we got the dressing changed and were informed that this drainage was not inductive of infection and instead just normal drainage free surgery. Thank you Lord! During the dressing change, we also got a chance to see the incision and were told that it was healing nicely. It looked better than what I had envisioned for this point post op! Still a pretty big scar, but looking good from what we can tell.

Today, they are planning to give her some sprints off of the vent to just nasal cannula oxygen (meaning no pressure, just oxygen). Please pray for Aubree to maintain her o2 stats and vitals during this time! Her being able to have sprints off of Cpap are crucial for be to be able to be moved to pulmonary floor (a definite step down in intensity from the picu) and eventually home. They have also reduced her ipv treatments (forced, percussion type breaths that help loosen anything that might need to be expelled from the lungs), which have to be completely discontinued before Aubree can go home. Steps in the right direction!

Also, please continue to pray for Aubree's buddy Madden who has Jeunes syndrome and had his surgery 5 days before Aubree. He tested positive for a cold right after his surgery and is having a more difficult recovery period because of it. A simple cold for kids like Aubree and Madden is not simple at all for them and can affect them very severely like we have unfortunately seen with Madden. He has had to be reintubated after each of the two times they have tried to extubate him. Please pray for a speedy recovery for him and for whenever they extubate again to be successful.

We look forward to meeting another Jeunes family next week. Baby Will, born the day before Aubree, will be here at CHOP next week for outpatient consultations, labs, scans, and testing. Please pray for them in this journey, both traveling and medical, as many of these tests and such will be new for his family. It is just a lot to take in to get so many tests done and to take in all the information from them. Pray for a peaceful trip for them!

Thank you all again for all the prayers, love and support you have shown us. From cards and care packages to texts and calls to donations to messages on Facebook to silent prayers we might no even know about, it is all so greatly appreciated and lifts us up.