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.