A person’s a person, no matter how small

When Gabby was born there were so many worries. In my mind one of the biggest was would she ever walk. It took her longer than the average baby to start walking but eventually in the tiny kitchen of the tiny trailer we lived in she took her first steps. I remember staying so quiet not wanting to startle her, she was around 19 months old. This story comes to mind today because it’s World Spina Bifida day. October 25th has been designated to bring awareness to this birth defect. Some people look at me like I’m crazy when I tell them Gabby has spina bifida. Most people assume that all people born when SB are wheelchair bound. I read earlier today that SB is sometimes called the snowflake disease because it comes in so many different varieties. Gabby was born with a closed spina bifida defect that they call a tethered cord. Her tethered cord can cause numerous problems from headaches to abnormal gait to urinary incontinence. Gabrielle suffers from all of those symptoms. Dr. Alam has given us permission to bring Gabby to a local neurologist. She hasn’t seen neurologist since before she started walking. It’s strange my biggest worry when pregnant with her turned into my least worry as the years have passed. Currently, I have her scheduled for an appointment in January. Gabby has been having a few headaches and her feet are starting to turn and give her more trouble when walking. I’m anxious for this appointment and to learn more about this part of her birth defect. Gabby has so much determination when she decides to put her mind to it she can accomplish it. Her confidence needs some building, that we are working on. 

Gabby has continued to heal beautifully since her surgery this summer. She is handling the cathetering well. She has jumped right back into school making honor roll her first 9 weeks of 4th grade and joining both 4H and Beta club. Girl Scouts is back in full swing and our social calendar stays full all the time. We are so blessed to have Gabby in our life. She teaches our family so much on a daily basis. Tolerance, strength, acceptance, sensitivity and list grows by the day. The picture below is Gabby and two of her best friends after their honor roll assembly today. I’m so thankful her group of friends that she has made over the last year. It definitely has helped with her self confidence having them on her side.            

5016 miles later.. and worth every mile!

Hey everyone! I'm sorry that I've just gotten around to writing this blog post. It has been a crazy busy week of work and school. Why not throw a trip to South Carolina in the mix? Because apparently we are crazy! We left around 3 am on Tuesday morning and got home around midnight on Wednesday night, then went to work and school the next day. I don't recommend you do that. But hey, here we are and we survived! Total this summer we have traveled 5016 miles back and forth from St. Amant to Charleston. Every mile has been worth it!

Peace out MUSC (at least for the year!)

Gabby had a blood draw, renal ultrasound and urodynamic study done Wednesday morning. The urodynamic study was a new test for us. Gabby was very worried about it because she had never had one, turns out it wasn't very bad at all. They took us in a surgical room filled with an x-ray machine and table, lots of computer screens and some type of automated pump. The basically put a catheter in her mittrofanoff and also one in her colostomy stoma. The catheter in her mitt is hooked up to the automated pump that pumped what I assume is saline (forgive me I didn't ask) into her bladder. While the machine is pumping the nurse watches several computers reading how much volume is being pumped and at what rate it is going in. Dr. Alam had his own computer that he was watching. The x-ray was mobile and positioned above and below Gabby while she was being entertained by a sweet child life specialist. Every 5 minutes or so Dr. Alam would call out x-ray and a new image would pop up on another computer screen with an image of Gabby's bladder that Dr. Alam and Dr. Hyler (one of the urology fellows) would look at. This went on for around an 45 minutes or so. Eventually, her bladder reached an amount of 180 cc. The purpose for this test was for a few reasons. 1) to check how much her bladder can hold 2) how big her bladder is. 3) to make sure that her bladder didn't have any leaks. It was extremely laid back the whole time. We talked about Gabby and our home routine along with talking about how ridiculous and Top Gun sequel is at this point in Tom Cruise's life. :) Once the study was over he removed the supra pubic drain and said that the hole left should be gone in a day or two. After that she had her ultrasound and then blood drawn. Once we finished up there we headed upstairs to meet with Dr. Alam and then a nutritionist. During our meeting with him, he kept going on and on about how happy he was with the results of Gabby's surgery. He said pending in complications we won't have to go to Charleston until next summer for a follow up that will probably include another urodynamic study and possibly a cystoscopy of her bladder. We are to continue cathing her every 3 to 4 hours along with continuing her nightly Gentamicin antibiotic bladder flushes to help keep her bladder healthy and keep infections away.

While we were there I did take the opportunity to ask him about kidney disease. I have a private facebook group that I read almost weekly about different kids and their problems with kidney disease. After reading about it so frequently, I had to ask Dr. Alam why the subject has never come up with Gabby in the last 9 years. From his opinion in Gabby's case she has been very fortunate not to develop kidney disease as of yet. Kidney disease can develop due to many reasons but in most of these OEIS kids it tends to be because of reflux of urine back into the kidneys causing chronic infections. While Gabby does carry streptococcus bacteria in bladder all the time using the Gentamicin keeps it from overgrowing into her kidneys. We are also going to add a probiotic to help keep it at bay also. This doesn't mean that she can't develop kidney disease in the future but as long as we keep on the same path and stay vigilant it should definitely help prevent the development of kidney disease for a while at least.

Dr. Alam also had us meet with a nutritionist. Gabby's weight has been a concern for quite sometime now... well at least the last 6 years. When she was hospitalized for surgery in 2013 they tried doing NG feeds with Pediasure and Pedialyte but unfortunately her little belly just couldn't handle it. She would sit hooked up a machine for hours only to vomit it all up, we weren't getting anywhere. I did really enjoy talking to this nutritionist. She definitely understood that kids on the general don't have the best diets and gave us some tips that we can try at home. She also wants to add daily multivitamin, vitamin D, fish oil and multi mineral complex to Gabby's daily list of things to take. It sounds like a lot but if it will help her not have to do NG feeds I'm totally game.

We will have do to do ultrasounds through out the next year but those can be done locally and then the images will be sent to Dr. Alam to review. The biggest and most exciting news that Gabby received was that she could go swimming whenever she is ready!

Home sweet home

Home sweet home, Room 733

Good afternoon everyone! We are back in Charleston this week for a few things. 

1) cystoscope 

2) drain tube removal from mitrofanoff 

3) Suprapubic tube replacement 

4) mitrofanoff catheter training

After getting a good dose of meds to help her relax the morning progressed pretty quickly.  

Daddy got to put on his fancy moon suit so he could escort her to the OR while stayed I behind with little sister. After that we went to catch a quick breakfast downstairs and came back up to wait in the waiting room. As we exited the elevatorDr. Alam was standing there typing a text to me to find us, he was done? We couldn’t have been gone more than 30 minutes. He had pictures of her mitt stoma and bladder. He said he was ableto easily see that her bladder augmentation and mitrofanoff are healing really good. Dr. Alam came into the PACU after the procedure to teach mehow to catheter Gabby via her mitt stoma. I’ve been catching her for over a year now but this is definitely different. So far it doesn’t seem to cause her any actual pain or discomfort. I think she just doesn’t enjoy having a tube stuck in her every 2 hours. The time span will increase with time as her bladder stretches. The goal time period isgoing to be every 3-4 hours. Gabby and I will getto stay tonight at the hospital. We should check out in the morning. We will stay in Charleston another night and then have an office visit on Wednesday morning at 9am. Pending no issues we will head back to Louisiana after the appointment and get home late Wednesday night. Then it will be Granny D’s turn to train on cathing. 

We will follow up again in 8-12 weeks. That trip should be a pretty quick one. I think I remember him saying come in Monday go home Tuesday. We will have one more follow up before the end of the year for a urodynamic study. He said that weput a camera in both her colostomy stoma and mitt stoma. This will give the urology team the ability to watch how her bladder holds and releases urine over a period of time. He told us that she will be awake during that procedure. 

We also discussed her spinal defect and her footdrawing up further over the last couple of years. He gave us permission to see a neurologist and orthopedic surgeon at home. He said he is comfortable with other surgeons operating as long asthey aren’t touching her abdominal area and are in complete communication with him. We have come too far for someone else to stumble in and mess everything up. As far as her next surgery with him, well, that all depends on her, her growth and when she really hits puberty. From the sound of things we should be able to go a few years without a surgery on her abdominal area. Praise God!!! 

Again, Bart and I will never be able to express our thanks for all of the support and prayers. Without your support she would not be as far along as she is today. 

The final days

Good morning everyone! After my frustrated post the other day, I really did feel worried that this trip was about to be longer than hoped. Dr. Alam is always extremely cautious. Don’t get me wrong that is appreciated. I mean would you want to operate for 12 hours and then rush the recovery along just to have something go horribly wrong. No, probably not. Apparently, it was discovered during the surgery that Gabby has a large amount of scar tissue that had attached itself to her gallbladder. I believe Dr.Alam told me that a piece of bowel was were the scar tissue originated from. He spent a good amount of time during surgery dissecting the scar tissue to separate the bowel from the gallbladder. Once the surgery was completed one of the worries with giving her fluids or food orally was that the bowel would get overly heavy in one area and cause it to invert and twist. If that were to happen it could be disastrous With possibility of an emergency surgery. So, that was the reason for waiting the extra few days for the bowel to wake and strengthen. When you are in the moment though it is hard listening to your baby cry that their throat hurts and they are hungry. Since that day... she has gotten to drink and then about 12 hours after that food came. Her first pick... PIZZA! 

Since then she has been eating and drinking small amounts. The food is important but not as much as drinking. Her drinking does need to increase but hopefully it won’t hinder us from getting out. I was fully expecting to be in the hospital another 2-3 days but Dr. Alam says that we can be allowed to check out on Sunday... like tomorrow!! We will go back to the hotel and hangout a day or so. She is already scheduled for a follow up appointment at the clinic on Tuesday afternoon. From what we are understanding as long as everything goes well at the appointment then can head home. HOME!! By the time we arrive home Gabby and I will have been gone right at 20 days. She will be coming home with 2 large drains from her new mitrofanoff and her bladder. Bart and I have been trained on how to flush them 2 times daily plus clean the drain sites and the tubes. There will be limitations on what she will be allowed to do the remainder of the summer but we are going to try to make the best of it. We will come back for 3-5 days at the end of July to have the drains pulled and be trained on how to catheter her the new way. Thank you to everyone that has followed us along this journey and all of the others up till now. Keep the prayers coming for us to get out of here and headed home and for no complications while at home the rest of the summer. 

Bekah and Michelle

Every time we are in the hospital for these surgeries I feel like there is always that one person, usually a nurse, that you connect with. This trip it was nurse Bekah. Don’t get me wrong we haven’t had a nurse here on any unit that we have a minutes trouble out of. Margot, Lindsay, Megan, Heather, Karen, Madison, Natalie, Katie, those are just the ones we have had in this 7A unit. They have allbeen absolutely wonderful. Bekah, is different though. Every time we had her things were just... easy going. We didn’t have worry about anything and she was one Gabrielle’s biggest cheerleaders. She has also been a wonderful advocate between us and the urology team pushing for us at different times and situations. I think what really did it in though was when I realized how much Gabby connected with her. Yesterday, Friday, was her last day on for a few days. After she gave report to our night nurse she came by the room to wish us well. She gave both Gabby and I hugs and tried as she had everyday before to get Gabby to give her a high 5 or dap. Gabby finally gave her a high 5 last night. After Bekah left Gabby fell apart.... crying. I’ll be honest I shed a few tears myself. I forever remember her kindness and her being in the unit hallways as Gabby is walking cheering “Go Gabby! Go Gabby!”. 

I was able to find one picture that happened to have Bekah in the background. What blessing she has been to our family this trip! From our understanding this will be Dr. Alam’s last stop, for a while at least, with hospitals. So hopefully we will encounter Bekah again for Gabby’s next surgery.But for now thank you to Bekah and all of the wonderful nurses on 7A, 7C (Critical care) and ICU. 

The other blessings this trip have been from the ladies of The Childlife Team. They have an assigned person for each unit on floor 7. Michelle, has been the one we have had in 7A. Gabby seemedto connect with Michelle almost immediately. Maybe it was all the cool LEGO sets, light fixture, American girl and slime that she gifted to Gabby. Lol! But honestly before all of that happened Michelle was much better at calming Gabby down than I was during stressful situations. These ladies are called on by family and nurses to help assist in all kinds of situations. The day we arrived on the floor Gabby was upset and crying just because she knew what was coming. The nurses immediately called Michelle in to help Gabby feel more comfortable. She has a calming voice and easy going manner about her that Gabby took toright away. Another huge thank you to Michelle, Allison and Laine the Childlife Specialist for 7A, 7C and ICU. 

Frustrated...

Good morning everyone! I’m sorry that it’s been a 3 days since I’ve updated. In those 3 days we have had a couple of triumphs. First, they removed the NG tube!!! Hallelujah! Second, walking is getting easier each time. Yesterday she got up and walked for us 4 times! Once with PT and 3 times with Bart and myself. We also got to go to the Atrium yesterday. This is a huge playroom on our floor with all kinds of toys, books and arts and crafts. 

So on to our frustrations. They pulled NG yesterday morning and we were hoping to start sips ofwater last night... the urology residents said no. So, here we are a full 24 hours later. We had the nurse message Dr. Alam regarding her having sips of water and the answer was still no. I’m so frustrated for her! We have been asking her to do so much in the promise that she would be working toward the ultimate goal of... food. Our sweetgirl has eaten or drank anything since 6/11, eights days ago?! She is working so hard but her colostomy output hasn’t increased beyond a couple of teaspoons and minimal gas output. This is what the urology team is using as their reasoning for not giving her anything by mouth. 

I decided to included some of our better moments over the past few days. They have a team of 50 volunteers that bring therapy pets that come by the patient rooms. So far we have met 5 puppies. Gabby and Avery been able to do some crafts together to occupy some of their time. 

As always thank you so much for your continuedsupport and prayers! 

Moving in more ways than one

Good evening everyone! Let’s jump right in to allthe excitement we’ve had around here. Most of you probably saw our Facebook post yesterday of Gabrielle walking. I’ll be perfectly honest it does take some bribes to get her out of the bed but honestly, would you want to get up? The video was actually from the second time she walked yesterday. I was making a run to the store when she walked the first time. PT has started to come by at least once each morning to get her up and moving. Today she walked twice as far as yesterday.

 

Once she comes back to the room she sits in her chair for several hours. It makes it easier to play with slime or LEGO’s or paint. 

Our next big news is that we moved to our regular unit today! The only thing keeping us from moving was that she was on a drug called Precedex. This is used to assist with pain management by helping her relax. We talked to the anesthesia team this morning and they had no problem trying her off of precedex and she seemed to handle it fine.

 

Once we moved she did start to have some painso we did end up giving her a dose of Dilaudid late this afternoon. 

Last exciting news, is that she has had some output from her colostomy which means her bowels have woken up. Dr. Alam stopped by for a visit this afternoon and said that he may be willing to pull the NG tube tomorrow but that she still will have to wait until Wednesday possibly Thursday before she can start a clear liquid diet. Poor baby is starting to really get hungry. Once she actually starts clear liquids it will have been 7-8 days since she has had anything by mouth. With your prayers hopefully tomorrow we will get to see her pretty little face with no tape or tube. 

This afternoon the girls were able to play with each other for a bit. I think Avery was just as nervous about being in the bed as Gabby was. Poor Avery has been so worried about Gabby. She ask questions all the time about when she can eat and drink. And she wants to know why Gabby hurts. I’m so happy that Bart and Avery were able to stay. I believe having Avery here is going to help Gabby want to recover faster. 

Your continued prayers are such a blessing to our family. Thank you so much! 

Happy Fathers Day

Happy Fathers Day to all of the wonderful dads out there. Especially to my husband, Bart! 

This is Bart’s usual spot most of the day since she was an infant. Whether he is petting her hair, cheering her on, assisting nurses or fussing for her to work harder. I’m so thankful that he is here. 

So, I was supposed to be saying good bye to Bart today and sending him back home. That was the plan if Gabby was in a regular room, which we aren’t yet. For those of you who may not be aware... Gabby and I had a few issues when we first got here regarding where to stay and the factthat there were some scheduling issues. Once I saw Dr. Alam and spoke with him along with knowing Bart was on his way to Charleston helped my mood and Gabby’s immensely. We realized after that first week that the 4 of us as a family unit function much better together than we do apart. With that being said Bart has decided that he and Avery will not be going back home tomorrow.Granny and Mimi will be heading back home on their own. I so appreciate them coming for the support, help with Avery and the comedic relief. Gabrielle and I are very happy that Bart and Avery will now be staying with us in Charleston and our family is back in one town together. Some families are able to travel for doctors appointments individually but for our family we work better as a unit especially for extended periods of time like this. I’m so thankful that I have Bart to do thisthing called life with. Bart and I believe that all things happen for a reason. Bart and I were selected to be Gabby’s parents and we accepted that challenge together and we will work our hardest to complete it together. 

As for an update on Gabby... yesterday she was moved for the first time. She had to sit up, standup and move to a chair at the bedside and there she sat for 6-7 hours. She has been the strongest little girl... hardly complaining. Some little whimpers here and there when we ask her to do spirometer, move a tube or remove her bandage from her 6-8 inch midline incision. She stayed awake most of the day. They did make some changes to her medications like adding Pepcid & changing out Tylenol for Toradol. Today we will be aiming for her to get up and walk a bit and sitting in the chair again. We are hoping moving around will help wake up that gut so we can start a clear liquid diet soon. Poor baby hasn’t eaten a thing since this past Tuesday. 

Just a few more pictures of the favorite man in our lives. Happy Fathers Day! 

ICU and the day to follow

Hey guys! I would consider today to be a pretty good day, not so sure Gabby feels the same.  When we got back to the hospital today Gabby was still in the ICU and the residents from the urology team were flushing out her Suprapubic tubes. There are 2 of these, one leads directly to the bladder and one leads into her new mitrofanoff opening. These are to drain all of the fluid off of the bladder constantly so it has time to heal from the augmentation. The use saline or water twice daily to flush the lines to make sure that nothing has clogged the ability to drain. Overnight Gabrielle has woken up complaining of pain so her nurse gave her a dose of Dilaudid for pain. She recieved one more dose of that later in the morning and can continue to get it every 2 hours as needed. Bart and I are trying to avoid giving that to her though as it will slow down the gutsmovement. The rest of the day she was able to rest comfortably between her nerve blocks, Valium and Tylenol. There is speculation that the catheters from the nerve blocks is leaking so sometime tomorrow the anesthesia team will be removing them and making adjustments to her pain regimen. We were able to move her out of ICU and are now in the step down unit!! THIS is very exciting news! Dr. Alam stopped by this evening afterthe move and it very clear that tomorrow she was to be up and out of the bed sitting in a chair for the majority of the day. She also has to bulk upon using her spirometer more tomorrow to prevent pneumonia but also to promote healing. We are hoping to be moved to the regular floor by theend of the weekend. She had a visits from Avery,Granny D and Mimi Mary today. Bart will be staying with her tonight and I’ll take tomorrow nights shift. Thank you all for your continued support. The pic today is from Avery’s visit to the ICU. ❤️

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.