The one we’ve all been waiting for...

Praise the lord... what a wonderful day he blessed us with! I want to start by thanking everyone for your prayers and support. She would be whereshe is without your amazing prayers. Her surgery was completed in less time than planned and she has already been extubated!! Just look at thatgorgeous face, will you?! As long as tonight goes well she should move from the ICU tomorrow into either the step down unit or the regular floor.She hasn’t needed any narcotic meds only her Bupivacaine nerve block. When Bart called ICU moments ago they said she did wake for a moment and told the nurse she wasn’t in pain. Don’t getme wrong... I know there is going to be pain but tonight she needs to rest comfortably. 

I texted my work family earlier when we were waiting to see him that I wanted to see walk in with a smile. If he walks in without one you know he is concerned. But oh my gosh he was beaming when he walked in the waiting room. This surgery was multifaceted from the planning stages. As he said earlier he plans for things to go one way but of course there are always bumps. Thankfully there was only one hurdle to jump and he had to do some soul searching to decide what to do.That part was to do with her reproductive organsand at this time he made a conservative decision and Bart and I stand behind him in that. I won’t get into the specifics of that on this blog due tothe nature of the topic. Getting back to the otherimportant parts. 

Kidneys: He detached the ureters that connect the kidneys to the bladder and repositioned them. The point of this was to try to get them higher than the bladder itself. This should prevent reflux from happening where the urine backs up into the kidney causing painful infections and damage to the kidneys. 

Bladder: Dr. Alam used a piece of her small intestine to augment her bladder and make it bigger. Since her bladder doesn’t have a sphincter it has never held a full bladder of urine and therefore has never stretched like mine or yours. That urge that we get to go to the bathroom she doesn’t know what that feels like. Then her artificial bladder neck that he created years ago was removed. He made a new one closer to the top of the bladder and attached it tube a new opening at the surface of the skin called a mitrofanoff. Dr. Alam seemed to be in shock at how good of condition her bladder was in and that there enough “materials” to put the mitrofanoff exactly where he wanted on the opposite side of her body from her colostomy. 

Reproductive: As I said earlier a large part of this has been postponed until a later date. 

Colostomy: There was the possibility that a revision would have to be done and colostomy be moved. Thanks to small gifts from God this DID NOT have to be done at all!! This is saved Dr. Alam hours of work in the end. This is the reason the surgery was only 12 hours instead of 16-20 hours. 

Abdominal wall: When Gabrielle was born she had a huge hole in her abdominal wall. It was bigger than a softball. Due to this she is missing the abdominal muscles that you and I have. When she had her first surgery at 3 days old they used alloderm to close the hole. Eventually she had 2 more surgeries to close the hole in smaller and little better each time. Dr. Alam was fully preparedto have to add a new piece of Alloderm to the previous because there is no muscle there help hold everything in. But another gift from God there was no need to add anything. He was able to stitch the existing Alloderm back closed with no need to add.   

A crazy little factoid he dropped while we were having some candid moments with him... there were 300 needles used to stitch in different placesof her body due to them becoming dull. That is mind blowing to me. 

I will Dr. Alam a good amount of credit for his work. His hands are beautiful instruments that do Gods will in the surgical areas that they are needed. I know in my heart that today’s blessing were nothing short of God’s handiwork. Praise be to him for this wonderfully exhausting day... it was so worth the hours spent in the waiting room & in the car to get here. I will continue to post updates each day. 

Surgery day update #3

Good evening everyone. We have just recieved an update phone call. The nurse said that everything is going along great. We are finishing up hours 8 and 9. They are currently finishing the mitrofanoff. They will then do some work to the small bowel. Once the bowel is finished he will start closing her up. The nurse speculated another 2 to 21/2 hours left. That will put us at around 12 hours total... much shorter than originally planned and we so thankful for that. I’m anxious to speak with him to see if he was able to accomplish everything that he wanted since he will be finishing upearlier than originally planned. Once she is done she should move to recovery and the to ICU where she will remain for a couple of days. I will update later on tonight after we have been able to see her and speak with him. Thank you for your continued prayers and support for us. 

The board above is the surgery board we have been following Gabby’s stage on. Each color means something different. It has been flipping through 3 screens all day long almost completely full of OR procedures. Gabby is the 2nd orange line from the top. We have been patiently waiting for it to turn purple which means her case is complete. They just told us that they will be shutting down this waiting room at 8pm tonight. So at that time we will move to the ICU waiting room to waitto see Dr. Alam. 

Surgery Day update #2

I just got phone call #5 of updates from Mrs. Roberta. We are in hour 6 I believe... sorry it’s hard to keep track. We were up at 5am and each got around 3 hours of sleep last night. Since my last update they have done a bladder neck resection. That means that the man made bladder neck that he (Dr. Alam) created years ago has finished its job and has now been removed. He had to disconnect and move the ureters (this connects your bladder to your kidneys). The reason for moving those is prevent bladder reflux in the future. Ifreflux were to happen, reflux meaning the urine back up from the bladder back into the kidneys, this could cause constant bladder infections. Currently, he is working on taking a piece of small bowel to expand her bladder and make it bigger. He will then be using either small bladder or appendix to create and opening to the skin in the abdominal area. This is what creates the mitrofanoff. This will give us the ability to cath her multiple times daily. More updates as I receive them. 

My sweet girl 

Surgery Day update #1

I don’t have a whole lot to write but wanted everyone to be as up to date as possible. Plus, it helps occupy my mind. Roberta, she is our nurse that is in the OR with Dr. Alam just called me for the second time. She said that we are now 2 hours into surgery and they are still working on opening her up. This means that have successfully completed 2 scopes on her prior to surgery: one was a cystoscope and was a vagiscope. Also during that 2 hours they placed a central line. This central line is a larger form of an IV that will more than likely be in her neck. This central line will be used to give her TPN (total parental nutrition) over the next several days. The reason for the TPN is to give her nourishment over the next several days as she will not be allowed anything by mouth until her bowels awaken from surgery. This can sometimes take up to 5 days due to anesthesia and narcotic pain meds. They also did a Bupivacaine nerve block and epidural to help keep her comfortable during and after surgery. Hopefully using Bupivacaine instead of a narcotic will keep her bowels from “sleeping” to long after surgery. At this point he is starting to open her up. Dr. Alam had told Bart and I last night that the process could take 4-5 hours just by itself. This is due to her previous surgeries and the scar tissue created from each one. As Roberta put it to me earlier things are going slow and steady and Gabby is doing beautifully. She will be calling me with updates every 2 hours. Some of these updates will be more informative than others so there may be a while between blog post if there isn’t a lot to say. Thank you all for the constant support, love and prayers. 

Avery is here with us for a while today and so farhas gotten to visit with a therapy puppy named Deacon and has gotten to make Gabby a get well card. She is being very patient on such a long day. 

 

Hospital check in and all things that come with it

I’ve tried to start typing this blog for a couple of days now but I was just in a really negative place. The last few days have been rough between being homesick and having to unexpectedly move out of RMH. I don’t want to portray them in a negative light what so ever but the RMH here has different rules on maintaining possession of a room there. Those rules would not allow me to stay the night with Gabby at the hospital and well that just won’t do for us. We did enjoy our few days there between the playing with the house dog and playing on the playground.

She she decided we needed to have a little photo shoot. 

Playground fun  

Petting Gardy the RMH house dog. 

We checked into the hospital yesterday afternoon. The nurses, nurse assistants and child life have tried their best to make us feel at home. Gabby was very upset when we first checked in and the nurse were on top of it and got child life to come in immediately. Our child life person during the day is Michelle, she is wonderful and very patient. She helped us out during them trying to place her IV. This Gabby’s first IV since she was an infant that she has been awake while receiving it. She has always been gotten in during surgery or had a PICC line. It took 3 tries which ended up with the IV specialist using a ultrasound machine to get it placed. Along with that they put in a NG tube. When they put in a NG tube they bring a mobile X-ray around to make sure the tube is in the stomach where it needs to go. Unfortunately, hers was not in the right place and Dr. Alam pulled it and told her that he would give her a chance to drink it. But if you have drank the prep for a colonoscopy before you know that it doesn’t taste good at all. After drinking around 2 oz she vomited and we decided to place the NG tube again this morning. The tube has been placed correctly and they started a constant feed of prep. The will start at 50 cc per hour increasing every 10 minutes by 15 cc until they reach 200 cc/ hour unless she starts vomiting again. When I saw Dr. Alam last night we had a very candid talk about mine and Gabby’s time here so far and how disappointed I have been. He asked that I get myself together and to make sure that I was mentally in the right space to proceed with the surgery. He realizes that things aren’t going as smoothly as they have at the past hospitals and they are working on getting the kinks worked out.               

Dr. Alam told us to be prepared for a long day Thursday. The surgery could last up to 9-12 hours. He said this is the most complicated surgery that he will probably ever perform on her. He will start by scoping her bladder to get and idea of what it looks like because she hasn’t been scoped in 2 years. It will involve taking a piece of her small bowel and adding that to her bladder to increase the size of it. There will some reproductive system exploration and then also a surgery regarding that area... how in depth will depend on what he finds and lastly a possible revision of her colostomy. Just having her under sedation that long is dangerous but I have so much faith that he will be guided todo exactly what she needs to make her future better. Once she comes out of surgery she will be in the ICU hopefully not more that 2-3 days. From there it is possible that she will move to a step down unit and then back to unit 7A where we are right now. He said yesterday that we are looking at 10-14 days in the hospital after the surgery. Let us pray that it is on the lower end of the spectrum. 

Bart, Granny, Mrs. Mary and Avery are currently in route here and I know once I’m able to touch them that will lift mine and Gabby’s spirits immensely. 

Thank you for your continued prayers and support. They are always greatly appreciated. I will try to post several times during the day tomorrow with updates during the surgery. 

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.

Big News from our recent trip to NYC!

Ok, so after a month of waiting I can finally make my blog post. The first week of April we drove to New York City for what we thought would be Gabrielle's pre-op appointment for her upcoming surgery. That Monday morning Bart, Gabby and myself drove into New York City in the snow... CRAZY I know! When we arrive for her appointment that morning we headed to radiology for her usual renal ultrasound. He wanted to see recent images of her kidneys and bladder to make sure that everything was looking healthy and there no kidney reflux. Since she has kidney that is exactly parallel to her bladder (this is a called pelvic kidney) she runs risk of urine running backwards from her bladder back into the kidney. This tends to cause kidney infections which as of yet she has never had one. Thank you sweet baby Jesus! Once done with the ultrasound we headed to Urology clinic to see Dr. Alam. We had just sat down in the waiting area and here he comes to get us himself, just one of the many reasons I love him. He always has a huge smile on his face when he greets us. :) The other part of our appointment was to teach us how to catheter Gabrielle. To prep her bladder for surgery and get it as healthy as possible he wants us to catheter twice daily, during the evening catheter time we also flush her bladder with Gentamicin solution. This is an antibiotic solution that thankfully we are able to make at the pharmacy where I work. Since Gabby was born with her bladder on the outside and it stayed that way for 3 years she naturally carries bacteria in her bladder. If allowed the bacteria can overgrow and give her urinary tract infections... basically she constantly has a bladder infection. This overtime makes the bladder walls deteriorate and weaken. Flushing her bladder with the Gentamicin keeps the bacteria at bay and allows her bladder to become healthy. Now that I have explained all that to you I can tell you why I have postponed my blog post for a month. We are sitting there catching up with Dr. Alam and talking about the upcoming surgery and her surgery date is mentioned. The surgery was scheduled for June 5th. He says "Well, I have something to share with you both but you aren't allowed to post anything about it because I know several of my other families follow your story. There is a chance that I'm leaving New York." At this point Bart and I are both like "PLEASE! Tell us you are moving south?!" He laughs because we made such a big fuss when he moved from Cincinnati to New York City. I'll be honest I didn't think we could pull New York City off. I mean we do have family in New Jersey and we love them dearly but I'm not one to want to burden anyone for any length of time. I was not looking forward to spending the summer in New York. 1) It so expensive! 2) Like I said earlier, I didn't want to barge in on Uncle Mark and Aunt Darlene for an entire month. 3)  We were going to have to leave Avery behind for at least half the time. He shares with us that over the last year since we have seen him that a few different hospitals have contacted him on the hunt for urologist. There were 3 in particular that he mentioned: Seattle, New Orleans (Dr. Ortenburg, head of urology is retiring), and Charleston. It felt like an eternity before he finally stated that Charleston was really after him big time. He said that he had already been on one interview there and had a second one scheduled for the week after we were there. When he went this time they were going to be looking at houses for he and his wife. I was so excited! It was hard to contain it and not get my hopes up. He said that he would let me know when he got back home from the trip. I waited the whole next week waiting to hear from him and nothing. So finally Saturday morning April 14th, I texted him and basically said "Well?" He said the hospital is wonderful. I have not signed a contract yet but that will be following shortly. Your family is the first to know to not say a word. Then this morning I see this on facebook...

Y'all!! I'm over the moon excited about this move. He will be just 13 hours away instead of 23! I've already be scoping out the Charleston Ronald McDonald house and it looks really nice. 

With all of this being said... what is up next for Gabby? Well, after discussing his potential move in length the day of the NYC appointment the following was decided. Once the surgery is performed we would have had to be at the hospital for up to 2 weeks. Then there will be 3 follow up appointments. Her surgery was originally scheduled for June 5, which would have put us having surgery in NYC and then all of her follow ups at the new hospital in Charleston. He expressed that he was very pleased with how Gabrielle was growing and that her bladder was currently pretty healthy and with the added Gentamicin it would of course get better. He said that he was completely fine with postponing her surgery. I asked him if he realized that we would have to put it off an entire year until her next summer break due to the extensive recovery time and he said that was fine. It just gives her more time to get as healthy and big as she can get. So... unless any emergencies happen we are postponing her next surgery until June of 2019. And trust me Gabby was more than happy about this, lol! Since we have gotten back home I have continued to catheter her and everything is going very well. She has gotten used to it and just lies and reads a book while I cath her and it takes maybe 5 to 10 minutes. 

The rest of our trip we were able to spend time with family and site see a little bit. We spent Tuesday picking up bagels from our favorite bagel shop and we drove to Hoboken to see Carlo's bakery and had a snack and shakes at Johnny Rockets. 

Later in the week we all (including Granny Dolores) went to the 9/11 memorial. It is really something to see if you ever make a trip to New York you need to put that on your list of places to go. We took the guided tour and they tell you all kinds of stories about some of the people that were there the day the towers fell. Then on Friday we left a 130am  and drove the whole 23 hours home in one day with Bart and I trading off. We got to see some beautiful country on the drive up and on the way home. The girls were excellent the entire trip (ipads are wonderful things, lol!)

Family picture in front of the Oculus.

Granny and Gabby in the big city 

My two little loves outside of the 9/11 museum