10.3.17 Post-Op

Aimee and I spent today in clinic appts. She made good forward progress yesterday and took in bigger feedings. She did much better today compared to last week, spending 8 hours in her chair and then coming home to spend an hour in her toilet chair. Getting her settled for the night and she is overall calm with no major pain. Progress!

We started off with an orthotics appointment to have her AFO braces adjusted and re-strapped. They were causing bruising and redness on one foot in particular, so we are hopeful that adding in a gel pad to that brace will help. 

Next we had a 90 minute appointment with the Neurodevelopmental clinic. This doctor helps coordinate all the different care that Aimee receives and provides support for outside therapies, homecare, ect. We discussed everything from puberty changes and skin issues to school absences and surgery implications. 

Next we met with the surgeon who put in the cecostomy. He checked over the wounds and recommended using a steriod on the granulation tissue that is already growing around the site. He is hopeful that that is the cause of the bleeding and discharge, but the tract is also still healing. It will continue to be tender for awhile longer. 

Lastly, we met with Aimee's GI specialist to work on a plan for what adjustments to attempt with the cecostomy. Plan A was not successful. We started with Plan B tonight and set up Plans C, D, E, F, and G. (Sounds like a Dr Seuss version of colon flushes!) Plan B was not successful on the first attempt tonight, but we will give each plan one week to work before moving to the next. We also discussed how to handle involving the GI specialist in the upcoming surgery recovery and how to insist on their involvement while inpatient. She did warn me that there may be nerve changes from the spine surgery that affect Aimee's bladder and bowel functions. There is no way to know ahead if these changes will be positive or negative. 

From here we will continue to slowly work Aimee back to her baseline. We are really praying that Aimee stays safe from sickness. Caleb picked up a cold from somewhere sadly and we are keeping them seperated. Please pray that Aimee doesn't catch it. She won't be leaving the house until her surgery day 2 weeks from today, except for a couple of midwife visits with me. Praying, praying that she stays well!