Thank you so much for all your kind words and prayers for our family. As you know, one week ago yesterday Lexxi had this intense surgery. Up until Thursday things were very touch and go with getting her pain managed appropriately on an ongoing basis. This is probably the one most difficult journey we have ever had to face as individuals and as a family. However, on Thursday Lexxi was moved to the regular pediatric floor from the PCCU (intensive care unit) and is now resting very comfortably in a private room. We have “moved in ” and made it our own as much as possible.
She is still currently on Tylenol, Advil and a morphine infusion pump but her pain is managed very well. Friday morning her little eye started to crack open (was swollen shut for the first 4.5 days) by Sunday morning her eyes were open and the next 48 hours after that there has been a positive snowball effect with her recovery. She is doing AMAAAZZZING! Better then expected. Yesterday morning Paxton put pillows all around her in her crib and she figured out that she could pull herself to a sit by herself. 48hours prior to that she wasn’t even able to hold her own head with the new “device” that we refer to as her “crown”. She continued to do several situps in bed (like 30) she was so excited to be able to do this “all by herself”! Lexxi has begun to play and the next step will be teaching her to crawl with the new weight of her “jewel covered crown”!
Lexxi and I both got a 9 hour stretch of sleep last night so I feel much better today. My Aunt Carol came and relieved us for several hours last night and my Aunt Naomi came from Guelph today to be with her which is allowing me to write this update!
The plastic surgery team visits with her twice daily and performs her bone distraction which doesn’t seem to bother her at all. The biggest concern now is keeping her halo stable. The screws that hold it in place just have a “tack like” end to hold them against her skull bone as her skull bone was too thin from all the pressure to use the traditional screws. The screws have had to be tightened a few times already which is extremely painful for her. (This could be due to the decrease in swelling) but could also be the movement we are not sure at this point. If the halo moves or tilts…back to the OR we will have to go.
I can’t express how much we so appreciate all your thoughts, prayers, good food, texts, emails and kind encouraging words. She will have to wear her “crown” for 3 months so till January 1st or so. We are uncertain at this point if she will stay in hospital or be able to come home with it. It will depend on its ability to stay put!
Nicole and Paul