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!