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. ❤️