It has been a while since we have blogged here at Walkers for Jocelyn but we have some ideas to help spread awareness and really get out into the kidney community.
First, lets's cover all of Jocelyn's bases.
We are two Botox injections in and we are seeing improvements.
What is Botox?, you ask. This excerpt was taken from University of Utah's website:
"Botox needs to be injected into the muscle of the bladder. This is done in the clinic or operating room. First the bladder is flushed with a local anesthesia, via a catheter, which is allowed to thoroughly numb the bladder. Then a scope is passed up the urethra (urine channel) into the bladder. A small needle is placed through the scope and several injections are made into the bladder designed to spread Botox throughout the muscle of the bladder. Most patients tolerate this procedure well."
We have actually seen commercials for Botox for Overactive Bladder. Jocelyn thinks it's really cool to see what she has on television commercials.
Jocelyn has been improving and most of the time she can stay dry. This makes her very proud. She is able to wear underwear and has even fallen asleep in underwear and woken up dry. Jocelyn has stated that she likes wearing undies more than Goodnights. This makes us all very happy as we never thought she would make the mental transition.
Next steps...while on the outside things have improved greatly, inside things look the same. Stable is normally a good situation, in Jocelyn's case, that's not good enough. Her bladder still contracts too often and doesn't empty. Her right kidney is still very swollen. She isn't in a good enough place, medically, to remain stable. Jocelyn has her next appointment in August to repeat some tests to see if the second round of Botox gave her urinary tract a chance to heal. If not, we are afraid that surgery will be back on the table. The surgery of all surgeries. We have been fighting against this surgery for 2 years and don't plan on stopping in August.
Mitrofanoff...where they take her appendix out to use as a canal from her bladder to her belly button for us to catheterize through. Taking ALL pressure off her bladder and kidneys. The reason we are so against it? It's irreversible...meaning, if she gets better, oh well, permanent hole in her belly. We are hoping to get Jocelyn up to, or through, puberty before we make a decision this big for her. I would love to have her input on the decision. The other reason we are against it is, her personality. She is a fantastic kid...we don't want to change her personality so much that we don't recognize her. She is so self conscience as it is...a hole in her belly that may leak urine from time to time, may ruin her. There is so much to consider.
Anyway, that's where we stand medically. It is a lot of information. Please message us if you have any questions! We are pretty transparent and willing to answer almost anything. If we don't know the answer, we can certainly try to find the answer for you.
Thanks for reading!
Note::: Kupcakes for Kidneys going on in Newark, DE next month!
Here is Jocelyn at Turkey Point, North East, MD. She is growing up on us!
