Last night the bubble on Bailynn’s back burst. Just like this past summer. It is oozing and swelling and the most frightening thing to witness in real life. The swelling has migrated to her shoulder. Her drainage is gross. No joy and jingles here, just prayers. No tinsel and no holiday cheer. Just fear.
I love the modern era in which I can email photos and concerns directly to Bai’s doctors and include them all in on the email. This morning, after witnessing what the night had brought us, I immediately emailed Bai’s surgeon in Indy and her local pediatrician. Both had different opinions. Local wants us to take her to Indy. They see the little girl that the office has grown to love and the horror that is her back. Indy wants us to wait …because… Bai started antibiotics yesterday. She has only had 2 doses and it takes 24hrs for them to truly be in her system and get to work. Also, it was discovered that Bai has ANOTHER! UTI! WHAT THE HECK!!!! So, the antibiotic is set to combat both the evils ravaging Bailynn. We removed the Tuberous Sclerosis Medication AGAIN! We can not win!!!
All traveling plans for Christmas, canceled. Thanks to those who come to us, we are so looking forward to seeing you and have a piece of normalcy this Christmas.Our annual trip through the Fantasy of Lights, will have to wait for next year. Our annual dinner, on Christmas Eve, at Biaggi’s, watching Santa tracker, will be an at home affair. I have promised the girls that I will go out to Biaggi’s and get our Christmas Eve Dinner. We will attempt to make home feel and smell as much like Biaggi’s as possible. The girls adore this tradition and it breaks our hearts as much as theirs to not be able to do it.
This is too important. Bai’s back is too precious. Those STUPID WORST MOST AWFUL RODS have to stay where they are! THOSE STUPID WORST MOST AWFUL RODS are the most horrible thing, that saved her life and took a piece of ease with them.
The one good things that has happened over the last 2 days….MONSTER BED IS GONE!!! Everyone CHEER with me!!! WOOHOOO!!! BUH BYE Monster Bed!! BUH BYE horrible, awful, rock hard mattress! BUH BYE institution look! HELLO, Bob’s wonderful handyman talents in fixing and putting a fresh coat painting onto Bai’s bed to make it work with her new soft-as-a-cloud mattress! Thank the Heavens for this man and his talents! Her daddy gave her back her PRINCESS status!
Prayers for swift healing are appreciated. I will continue to update as much as I can over the next few days as to her status. We only drive to Indy if she starts running a high fever , we see the metal from her rods, or mass amounts of yellowish puss starts oozing from the site. May none of this come to pass. Our Christmas Nightmare!
IF YOU WISH TO SEE BAI’S BACK HERE IS THE LINK. DO NOT!!! CLICK IF YOU ARE SQUEAMISH! THESE ARE GRAPHIC AND AWFUL! Bai’s Back 12.22.2015