Today, tested my inner strength as a mom. After a night of a 4 year old in the same hotel bed as me, with her feet in my back the whole night and thinking about the procedure they were going to be doing on my daughter, I got little sleep. I had to psych myself up: “I am going to be strong, I am going to be strong, I will not cry. I will not cry.” Did my inner strength win? Nope.
The only good thing about entering the room today was that Josie had no clue what was about to happen to her. The bad thing is, if they need to do this procedure again, it won’t go as smooth. She was a trooper! I was very proud of my daughter and her courage to do what they asked her to do.
I have never seen the look in my daughter’s eyes as they were placing the catheter and tube into her to run to her bladder. It was that look of fear. The look of, get me the heck out of here. Save me mom. Aren’t you supposed to keep me safe!? This was the point I lost it and my own tears started to stream down. I was trying to stay strong, but my little girl’s look made me weak. But like I said, she stuck through it!
The test they did today showed us a few things. It registered bladder spasms (the urge to pee) she is having. At which point she had one that peaked at 232. A normal person’s urge to pee is 20. That is how bad it is for her. The test also showed that she has a little bit of reflux going on. Which means, when she has a spasm and is trying to hold it off, some of her pee is shooting back up to her kidneys. We also found out, through a urine sample, that her bladder is only holding about 50% of it’s capacity. At this point, is when she has the urge/spasm to pee and this explains why she has to go to the bathroom often.
Plan of action: She is back on her pee medicine. We have to work with her to swallow a mini M&M, whole, so that she can learn to swallow a small pill. This pill is a time release one which will help her out better than the liquid medicine. So…we have some homework to do. If we can get her spasms under control and her bladder trained to pee the right way and not have all the spasms, then she won’t have to be on the medicine. But until then, this is what we have to do. Part of me is sad, because I feel like we are back at square one. But another part of me is happy because we did get some answers today and we do know what is going on in my little girl’s body!
I cannot say anything bad about the care my daughter was given today. It’s great to walk in somewhere that big, and the people caring for my daughter actually took the time and CARED for her. After a long 4 1/2 hours, we walked out with a few answers and a happy little girl that got a sticker, Tinkerbell purse, and Tinkerbell movie from the life specialist! That totally made her day!
I feel for parents that have children with disabilities and illness that have to see their child suffer day in and day out. This one little procedure pulled on my heart sooooo much. I give every mom out there the strength to do what they have to do, to better their child’s life. It took me a good 6-9 months to convince a doctor that something was not right with my daughter. And now, here we are, a year and a half later, going through all of this.
Our journey with this is still new, but am hoping we can get this under control very shortly!