Anxiousness setting in

Well… I promised an updated blog the other day to someone, somewhere so here we go. I can already go ahead and tell you this one is probably going to ramble. I have taken several days to compose all the thoughts that have been swirling in my head, but I just can’t seem to get them in any kind of order, so we are going to just go with it and see how it turns out. I do apologize ahead of time if none of this turns out to make any sense at all.

This is her last year as a Brownie Girl Scout... possibly continuing as a Junior Girl Scout. We will see! 

Our beautiful Gabrielle Parker has just turned 9 years old as of about 2 weeks ago. I can not even believe we are now just one year away from having her in our lives for a whole decade. That’s crazy, isn’t it? To recap last spring we visited her urologist, Dr. Alam, in New York to prepare for an upcoming surgery. Long story short once we got there, we received the news that in the Summer of 2018 he was going to be changing hospitals yet again. Thankfully, this time a little closer than New York… Charleston, SC. Due to this move Dr. Alam, Bart and myself decided it best to postpone Gabrielle’s surgery until this summer. By then he would be settled in at his new hospital and have all his new staff in place. Fast-forward approximately one year and we have surgery date and we are just about exactly 2 months away from that date. Let me just preface the rest of this information with …. I’M SO FREAKING ANXIOUS, NERVOUS AND just plain sick in my stomach about it at all times. There is a list of reasons why I’m having these feelings and we will get to them in due time.

Surgery deets. The surgery is scheduled for Thursday, June 13^th. The surgery will be at Medical University of South Carolina in Charleston. The surgery will of course be orchestrated and performed by none other than Dr. Alam and his team of fine associates I’m sure. While I won’t divulge all the surgery details, I will let you know that this surgery is mostly going to pertain to her bladder as the last surgery did. It will give her what is known as a mitroffanoff.  This will give us the ability to catheter multiple time daily. This can be both a blessing and a curse… but more on that later. She will go to either the PICU (Pediatric Intensive Care Unit) or what they call the step-down unit following surgery for hopefully no more than 3 days. The main reason for her stay in PICU in for pain management. During this time, she will be under sedation and intubated. Once her pain is being controlled well, she will be moved to regular floor and we will stay there another 7-10 days in the hospital. After that we will check out of the hospital and hopefully, fingers crossed, have a room waiting for us at Ronald McDonald house and will stay there another 2 to 7 days before being allowed to come home to Louisiana. This will put us home around the end of June if all healing runs as hoped. Then we will return to South Carolina toward the end of July for a second surgery to remove some surgical hardware stay around Charleston another couple of days for follow ups and catheter training and then come home just in time to start 4^th grade. Nothing like cutting it close!

Isn't she just the cutest. 3rd grade school pics came out great this year! 

Now back to my anxious nervousness. First off, this will be the first time that Bart and I have had to be separate during one of Gabby’s recoveries. Her last surgery that included a recovery was in April of 2013. Our whole family including 3-week-old little Avery and Granny basically moved to Cincinnati, OH for 2 months for Gabby to have surgery and recover. This was all possible due in large part to out family and friends that helped out by multiple ways… coming to Cinci to visit, watching our house and most importantly holding an awesome fundraiser so that we were able to be off work that whole time and not worry about our bills and travel cost. This time however, Avery is now 6 and the hospitals don’t really take kindly to having a completely healthy child hold up in one of their hospital rooms for weeks on end while her sister heals from surgery. So currently the plan is as follows. On June 6^th Gabrielle and myself will drive the 13 hour trip to Charleston, SC. She has a pre-op appointment with Dr. Alam on Friday, June 7^th. We will hang out and see the sights around Charleston and then she and I will check into our room at Che’ MUSC for her pre-op surgery clean out. Basically, this is all kinds of unpleasantness to clean out her colon while keeping her on a clear liquid diet for 48 hours… sounds like blast, right? (Insert sarcasm…. Here) Welcome to Gabby’s life. (and here) Sometime during these 2 days Bart will fly into to Charleston and join us for this fun filled time at the hospital (and sarcasm here too). If you can’t tell I deal with most things in my life filled with as much sarcasm and light heartedness as I can otherwise, I will lose it and by it… I mean my sanity. So that Thursday, June 13^th she will be prepped and taken in for what we are told will be an all-day surgery. Just to give you an idea of what that means… her last surgery in 2013 was an “all day surgery” we were literally the last family in the waiting room it took almost 10 hours. The only other surgery that took that long that day was a family whose child was having brain surgery. From here I’m not sure exactly which day but Bart will fly back home to St. Amant and Gabby and I will be on our own for approximately 14-20 days of mother daughter bonding time. My next thing that I’m nervous about is being away from Miss Avery Grace that long. I don’t think I’ve been away from her more than 3-5 days and that was one of Gabby’s other doctors’ appointments. Not to mention Gabby and Avery being away from each other that long. They are both extremely anxious about all of this. I try to bring up this summer as little as possible because it upsets them both. There will be lots and lots of Facetiming happening. Another thing is that Bart is my backbone a lot of times when it comes to the nursing staff. Gabby has never been real keen on nursing staff taking care of her, touching her or basically being in the room with her at all. Typically, we have the nursing staff teach us how to take care of all her needs except giving medication and we handle it all from wound care to bathing to changing bed linens. We are basically probably the family that most nurses hate. Probably my biggest two things to cause me anxiety is about her being under anesthesia that for surgery that long and controlling her pain. Every time we put her under, she comes out of it different, changed, like she is trapped inside of a body that isn’t hers. She has outburst that she can’t seem to control, she refuses to communicate, she becomes sullen and draws inward. It usually takes weeks sometimes months for her become 100% herself again. As children we have a very high pain tolerance. I do believe this to be true of Gabby however I also know that after anesthesia she would rather sit in pain than communicate that she is hurting… hardheaded little thing. So, we will use our usual method of watching her heartrate if she doesn’t want to communicate and give her meds whether she ask or not. We have learned through out past surgeries with her that if we she her heartrate and blood pressure start to rise that she is most likely having pain and just dealing with it internally.

While I do write this blog to keep you all up to date with her medical care it really helps me clear my head also.  As I was typing these words, I could feel some of tightness in my chest release. If you want to know how you can help us out… pray for her, pray for our family, pray for her surgical team, pray for her health. We love each and everyone of you dearly and you all do so much for us in so many ways that you don’t even realize. Thank you for following our continued journey with Gabby and there will be another blog post coming up soon and many more during this summers surgery.