Going home tomorrow!
It’s a big day … Dr. Mackenzie cleared Robert to go home tomorrow! He said he looks great!
After the blood transfusion, Robert’s hemoglobin numbers went up to 8.2 by this morning and his heart rate is in the range they were wanting to see. Pain management and sleep was a bit challenging overnight due to the catheter blocks placed in surgery running out, so this morning we transitioned to a stronger oral pain medicine today. By the end of today we feel we have a good plan for pain management as we head home. Though I am praying the pain continues to improve over the coming week and we can decrease all of the meds.
With Robert’s pain (and irritability) under control, we were able to take some time to meet with Dr. Tomatsu, who some of you may recognize from the R4R video. Dr. Tomatsu has been a wonderful partner for Rooting for Robert and is one the leading researchers in the world on Morquio Syndrome.
So, tomorrow morning we head home and we can’t wait to see Anna and settle into our new normal for the next 5 weeks & 2 days (but who’s counting?!). We can’t say thank you enough for all of the love, prayers, and messages … we wouldn’t have made it through this incredibly hard week without all of you.
I’m so excited for the next update to have photos from home! (The last photo I’ve included here made me smile … a highlight of the day was the Lays potato chips … just like the day before heading home after the cervical fusion in 2020!)