Annie has Spina Bifida and various complications that have been caused by this diagnosis.
All of her surgeries she has received while we have had her, however, have had nothing to do with her SB. She has a very complicated cyst in her brain, which on top of her Hydrocephalus, complicates things much further. Every surgery we have endured has been for this cyst.
Besides weekly therapies, the only thing that reminds me that she has SB is that she gets Urinary Tract Infections. Like a lot. About 6 in the last year maybe.
We have taken her to the ER a few times for a UTI because of our ignorance. You see, when she gets a UTI, you know it! She's way out of it, and super high fever that spikes through meds. Before we knew this, we would take her to the ER thinking it was her head.
After wising up, we began taking her to her pediatrician at first sign of lethargy to rule out UTI or other sickness before heading to the ER.
That was in Houston. She saw a Texas Children's Pediatrician who is the best DR ever. I just LOVED her. She was awesome! And she happened to truly understand SB from having multiple patients with SB. Not that she was an expert on it, but it was nice having a DR who had a clue.
Then in March, Annie became super lethargic. We were on our way to Dallas and she slept all day. Fearing for her head we rushed her to the ER and the fear fogged my memory- that morning she had a super, super stinky pee diaper. Diaper smells do not phase me- ever. I also happen to have a super strong stomach. This diaper was just pee and it was so rank I almost threw up. It was bad y'all. But like I said, I forgot that it could be a UTI, (which it was), and allowed fear to cloud my judgement.
I would not allow that to happen again.
In June when she slept 15+ hours a day, I took the conservative route and found a local pediatrician. He checked her out and found her to be healthy, (didn't check for UTI, but she was showing no symptoms). I appreciated that he admitted that it would be best to take her to Dallas for a CT because the local hospital was just not up to par. I greatly appreciated his honesty, and we left for Dallas. We were given the run around in Dallas, but eventually she was operated on.
Oddly enough, when we first took her to the ER, she had a UTI. With zero symptoms. Hmmm. After being on the 10 day antibiotic for almost a week when we returned to the hospital later that week, it was found that she had a second bacteria present- so a second uti- while on antibiotic! INSANE!
That brings me to the present. Last Tuesday Annie's pee stunk somewhat, and being a proactive mommy, I took her to her pediatrician. Normally I'd wait for a fever, but since she had no symptoms in June I did not want to wait. (She had no other symptoms but slightly smelly pee, but I can't let a UTI go because it could lead to Urinary Sepsis which is deadly).
Here is where the nightmare begins.
I was brought back and the nurse asked if she could stand to be weighed. Um no, SB. She asked if she could stand to be measured. Um no, SB. (And BTW, if she can't stand for one, what makes you think she'll be miraculously capable to stand for the other?)
Besides that fact that she should know from Annie's chart of her SB, it is actually clear that something is wrong with Annie's legs, even to the untrained eye. A 7 year old in the waiting room noticed and asked me what was wrong with them. BUT a trained nurse couldn't tell. Hmmm.
Then she leads us back to the room and asks why we were there. I told her I thought it may be a UTI because of the smell, but no other symptoms so I wanted them to check. She asked me to get a sample. Annie does not have control in that area, a sample would be impossible. I said I could use a cath to get a sample and she looked at me like I was speaking in Chinese. YOU ARE A NURSE!
I was floored at this point. But it gets better. And by better, I mean worse.
The DR comes in and asks if I want to test or if I just want to begin treatment. Are you serious?! Yeah, let's medicate my child with an antibiotic which she has already received 6 times this year, because her NON-MD mom had a hunch that it was a UTI. Come on!
Then they bring me a feeding tube to cath her with. A FEEDING TUBE. I had to ask for lubricant. In Houston, and Dallas hospitals, they don't just bring you a cath- they bring a cath kit which includes: catheter, lube, antiseptic, wipes, and a clean diaper. I was handed a feeding tube. Thank God I had hand sanitizer, diaper and wipes with me. What medical institution does not have catheters?!
Mommy was losing it.
After I handed off her sample, the DR came back and once again asked if I would like to begin treatment or wait for the results. Oh, gee, yeah I wasted my whole day here using a feeding tube to take a sample, but yeah let's start treatment now. Serously?!
I went to leave and I heard him tell his nurse that the results of the test would be ready by Friday and they were to call me.
In Houston, we had results in 10 minutes if it was a UTI, and then they sent a culture out to determine what bacteria caused it which took a few days.
This DR wouldn't be able to give me any answer until FRIDAY. UNBELIEVABLE.
I asked if I could have a prescription in case she went down hill before we got the results and he obliged.
Well, she hasn't really gotten worse, but I am pretty sure she has a UTI because her pee is still pretty stinky. I still want to get the results before I start antibiotic though, (your body can build up immunity to antibiotics and that would be bad).
Guess when the DR called me. Just guess. I saw him on Tuesday and he said results by Friday. It is Wednesday and I still haven't heard from them. I called this morning and still haven't heard back.
Annie's wonderful PT has recommended a pediatrician in another city that is her children's dr as well as pretty much all of her PT patients dr. A DR that is familiar with SB and other special needs. YES PLEASE!
I'm kinda at a loss as to what to do next. Do I accept this DR's diagnosis if I ever get it, or do I go to the new DR for another test? And do I lodge a complaint for complete incompetence of this DR and his staff? I do know one thing- I will never go back to that DR again!