Dr. Alam notes
Dr. Alam seems happy with Gabrielle's progress. This is the first time he has laid eyes on her since 2015. He said he is pleased with her growth... this is the first time we have ever heard these words come from his mouth in 7 years. However, he is going to have his dietitian call and go over Gabrielle's daily diet with us and give us tips on high calorie intake items and high water content foods. He says that she needs to pack on a little more weight before her next surgery because as with all surgeries she will loose some. The high water content foods are to help hydrate the bladder. The way Gabby's bladder is constructed makes it retain bacteria because there are all kinds of creases for the bacteria to catch on, the more water she drinks it will help keep her bladder flushed. This will be step 1 of preparation for her next surgery... increase calories and water.
*side note: she does currently have an overgrowth of bacteria present. Dr. Alam took a sample and is having in cultured. He will call or text me early next week with results and treatment plan.
Step 2: spring 2018 appointment. The purpose of this appointment will be to teach us how to catheter Gabby at home. Using the catheter to not only empty her bladder nearly completely but also to perform gentamicin bladder flushes. The bladder flushes are to help make the bladder as healthy as possible to prepare her for upcoming surgery in the summer of 2018. Dr. Alam wants us stay 3-4 days just to learn how to properly cath her... if for some reason we are not able to perform this everyday without her having pain then she will go in on the 4th day for a quick surgical procedure to insert a supra pubic tube in the urethra. Using that tube we will then be able to perform her bladder flushes. He said that if he ends up having to insert a Supra pubic then the surgery must happen within 3-6 months of placement. However, if we can successfully perform cathetering with out it then the surgery can be put off as needed. He will also be putting her back on Ditropan. I can not tell you how much I despise the drug Ditropan! Last time she took it in 2013 it turned her into a completely different child... she cried, moaned or screamed constantly. Being that I work in the compound pharmacy field I asked if we could just add the Ditropan to her daily gentamicin flushes ... this would help bypass some of the systemic side effects and get the drug directly to the site. Unfortunately, Dr. Alam said that Ditropan flushes were not an option as the drug does not perform well directly in the bladder... bummer. So, I have approximately 6-9 months to teach her how to swallow pills so that she can take the extended release form which supposedly has fewer side effects. Wish me luck! This trip may also include another ultrasound and possible cystogram/cystoscope.
Step 3: surgery! The goal for this surgery is the give her a "mitt" or mitrofanoff. This will be a small hole located in the abdomen that we will catheter her through, to empty her bladder several times a day. This will be used the rest of her life or until modern medicine comes up with something different. He will also be augmenting her bladder with a piece of her colon to make it bigger to lessen the frequency of emptying. Also, he will be moving the ureters. Ureters are what carry the fluid from your kidneys to your bladder. Due to her abdominal malformations at birth she has what they call a pelvic kidney... it is lower that it should be in the abdomen and that allows kidney reflux. Kidney reflux is when the urine backs up from the bladder back into the kidney. It can cause kidney infections and kidney stones. Moving the ureters will hopefully help prevent these issues. He will also do some internal work with her Fallopian tubes, cervix, and inner vaginal area. This will be the most involved and difficult surgery he has performed on her to date or that she has had by any other surgeon. It will last as long as 16 hours. Just being put under anesthesia that long brings its own list of side effects and concerns. Anesthesia is probably one of my biggest concerns with this surgery. It takes my sweet angel and dims her light from within. It messes with her beautiful mind and I hate that it is absolutely necessary for her to have it. The longer she is under the longer it takes for her bubbly little personality to come back and it absolutely kills me every time.
I have all the faith in the world that Dr. Alam will take the complete best care of Gabby that he can. He speaks of her like he is one of his greatest accomplishments. He beams with the warmest smile when there is good news to report and is somber when the occasion is called for. He makes no false promises and doesn't deliver false hopes. I can not say enough about his love and passion for the cloacal exstrophy kids that he works with. He devotes his entire life to these kids and thank god everyday that he was the urologist assigned her case when we were at Cincinnati Children's 7 years ago. We are a give it us straight family especially when it comes Gabby... gives us the bad with the good. We will trudge through it together and come out stronger on the other side using God as our tour guide.
Fun note: instead of driving into mid-city New York today Dr. Alam suggested to the train. So we took the train from Jersey to Penn Station and then a taxi to 51st street where the Columbia clinic is located (right across the street from Radio City Music). First train ride EVER and the girls loved it, they were not so keen on the taxi cab though. Then after our appointment we took another taxi to the Circle Line Liberty Tour. This is a tour boat that takes you on an hour long tour of Hudson River harbor and goes around the Statue of Liberty. The girls were so excited to see the statue. Gabby talks about it all the time since she learned about it in 1st grade this year. Then when we finished we walked about 20 blocks back to Penn Station to take the train back to Jersey. It was a great day!
Lastly... thank you so much to Bart's Uncle Mark, Aunt Darlene and cousin Jason for making Jersey feel like home. We so appreciate your hospitality and enjoy spending time with you guys and that the girls will get to this time with y'all. Thank you everyone for your continued support and prayers. They mean the world to us and what keep us pushing through.
