Thanks to everyone that has prayed for Myka over the last week, as she’s spent 7 out of the last 12 days at Children’s Hospital of Pittsburgh. Many of you know that she’s had issues with her bile ducts connected to her liver and she’s had 2 successful PTC Biliary Procedures to insert a new stent & drain into her bile ducts to address recent narrowing over the last couple of weeks. She was readmitted last Friday for 5 days with a fever to be closely monitored for infection and other drainage issues. We were thankful to bring her home on Tuesday afternoon!
We all know “home doesn’t equal healed” – it just means we as parents get to do all medical procedures outside the hospital without doctors and nurses. There’s always pros & cons for being discharged. We’re grateful Myka did not show any infection in the hospital, was able to get great biliary care and was protected from the Covid-19 healthcare crisis, but changing these biliary dressings on her stomach at home with just 2 adults and no nurses present has been truly excruciating.
Myka’s bandage and dressing on her stomach have been changed over a dozen times this week (enough to make the skin raw), because the biliary drain is leaking so much bile. The doctors don’t see an issue with the fluid loss, but we’re changing her clothes 3 times a day due to the bile leakage. She’s HATED the dressing changes…we literally have had to sit on top of her with gloves and masks on and pin her to the floor in order to change the dressing. As a parent, you want you child to run into your arms with joy, not cringe or flinch with fear, thinking you’re reaching out to change a dressing that will inflict pain. We made it through giving baby Myka 2 shots a day for months a few years ago and we’ll make it through these dressing changes – it just breaks your heart.
Thankfully she’s been increasingly “brave” with dressing changes in the last 24 hours. She came home from the hospital without much of an appetite, which caused us to run tube feeds frequently throughout the mid-week. We’re grateful that she’s eaten much more table food in the last 24 hours. Her “ornery” demeanor is starting to show again!
Right now, the plan is to nurse her back to full nutrition and energy at home, while caring for the biliary drain. She’s scheduled to go back to IR for another PTC biliary procedure on Wednesday, April 1st, and if all looks stable, they’ll look to remove the drain.
We’re praying for protection from this rampant Coronavirus, for no further procedure complications, for her biliary drain to expand her bile ducts, for successful wound management at home and for increased energy & nutrition for Myka. Thanks to those of you that join us.
In order to prioritize Myka’s health as an immunosuppressed child, we plan to continue social distancing and holding it down in quarantine mode on the homefront for the next 10 days in preparation for her next biliary procedure at CHP on April 1. We’ll update everyone further during that procedure. We appreciate all of your encouragement, support and prayers!
Love – R, R, A & M