Today I had one of those calls. Bai often needs these type of calls, I think she finds pleasure in taking out a shiny wrench from her satchel and tossing it light heartedly into our family spokes. Things had been going too well Bailynn. Much too well.
We have had a great few weeks of summer. We have had fun by the pool, we took the girls to the movie theater to see Finding Dori. This was our first trip to the theater in well over a year. Bai’s past few months have simply been to hard too venture to such a quiet location and hope for the best. She did amazingly well. One of her favorite movies, by far, is Finding Nemo. She can watch it every day and still have the same enthusiasm over watching it. I think the colors and the music captivate her. Finding Dori was no different. She sat in awe. She squealed and blew happy raspberries. She shook her head with joy and intently watched her favorite characters scroll across the screen. Bliss. Bai Bliss.
We took the girls to Opry Mills yesterday with our friends and had a fabulous time. Bai was beyond content. She was quiet and observant. She was happy and participating. These are things we haven’t had for a year. This is behavior we thought was lost. There she was, again, happy. So the call today was shocking. Surprising. We all know (yes, I’m including you – hey you joined this journey, you’ve been here and read this stuff!) she has had chronic UTI’s for the last year. We all know this. No surprise – no shock value there. However, when the nurse tells you that an infectious disease specialist had to be contacted, the report reads like the plot to an outbreak movie, and the term “isolation” was used, shock comes screaming back into the picture. Seriously Bailynn! I wish she could read this! So Bailynn’s bladder has a form of Ecoli in it that is medication resistant and communicable. So medication doesn’t kill it and we all can get it – YAY! I was told to wear gloves when changing her. I have to laugh at this. Bai’s diaper is like a bomb waiting in silence to EXPLODE everywhere. I feel like urine is an invasion upon my life. I wash Bai’s bed sheet layers, blankets and shorts every day. I can’t remember a day when urine did somehow impact my routine. Gloves. Ha. My little Bio Hazard.
We are going to Cincinnati Wednesday to see a urologist, have an ultrasound done of Bai’s bladder, another culture and analysis. My mother was going to make this journey with the girls and I, I thought Bob could sit this one out. I mean really, how exciting can a bladder ultrasound be?! WRENCH. Bob got the call from me about Bailynn. My initial text to him read, “Basically, she (Bai) never doesn’t have a UTI.” This pretty much sums it up. Bai has basically had a UTI since last June. June. JUNE! That is 12 months!
I haven’t a clue what they are going to do. Bai’s local pediatrician is out of ideas. The nurse didn’t think my bladder steam cleaning idea would work, or a slosh of peroxide in her bladder. Why are my cockamamy ideas so overlooked?! They think I’m nuts and I’m good with that. 😉 I know the problem, Bob knows the problem, Bai’s local doctor knows the problem, but there is no solution. UTI’s are caused by stool, Bai wears a “bacteria breeding ground” aka DIAPER. They are the worst, but what do we do. Tell me other options. Show me a solution!? I am willing to do just about anything. Well, except booty to the wind, that’s just silly and ultimately a new messy problem.
So here I sit after a few months of Bliss. Happy Bailynn. Content Bailynn. Our family is sailing through the summer with parties, fun with friends, and adventures. Bob and I are enjoying a Bailynn that doesn’t scream, a Bailynn that we can touch and lift and play with. We no longer have a fragile doll, though apparently we should be wearing gloves while we handle her right now (teehee). Our daughter is basically a bio hazard – should we get bags!? Barrels!? Signs?! No, too far?! I have to keep it light folks. This is just the worst. Why can’t Bailynn catch a break!????? If we don’t giggle and see the senseless need for this drama, we will cry, we will mourn. I choose to not. I choose to go on and laugh. I choose to throw myself into my family, my girls schooling and my little business. I choose to see that this is just another road bump, we will get over it and hopefully with little damage.
I am watching our family dynamic feel and seize relief. Does it have to be so short lived? We live for Happy Bailynn.
Pray we find answers and a fix (that isn’t the booty to the wind thing – really not pretty!). Pray the wrench is a simple bend in the spoke and not a wheel replacement ordeal. We (again, I’m including you!) all know Bai though. Never simple – never easy. No breaks.