Transplant for Trav

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Transplant for Trav I am setting this page up so that our family and friends can follow Travis' journey to Transplant. Causing low bloodsugar and leading to seizures.

Travis’s Story

Many of you already know that Travis was born with a rare liver disease. For those of you who don't it is called Glycogen Storage Disease Type 1B. This is a life threatening disease that causes his body to break down the sugars in food and drink to glycogen and then store them in the liver. The problem is that Trav's liver is missing an enzyme that tells the liver when to dispurse these sugars if the body needs them. He is the complete opposite of a diabetic. Along with these storage issues Trav's body doesn't produce enough growth hormone for him to grow at a normal rate. So he is on Growth Hormone shots daily and also needs to have a Nupogen shot everyday as well, to help keep him infection free since the infection fighting part of his white blood cells don't work properly. Trav has a G-Tube and needs to get supplemental feeds every 2 hours during the day and is hooked up to a feeding pump over night. He gets a special formula overnight and during the day he gets that same formula mixed with a high amount of cornstarch. Even though he can eat normally, he still needs the tubefeeds to help keep his bloodsugar regulated. The only cure for this is a Liver Transplant. We are currently on the Liver Transplant list at two centers, Lurie's Children's Hospital in Chicago, and University of Nebraska in Omaha. We have also been okayed by our insurance company to have Trav listed at Children's Hospital in Milwaukee, but are not sure if we will complete that process or not. We are able to do a Living Related Transplant and are hoping we can find a donor for him. As Trav gets older it will be harder and harder to find a match for him. Right now he can easily take a full liver from a deceased pediatric donor and a partial liver from an adult living donor. Travis has an older brother, Colin, who was born with the same thing and received a transplant in July of 2011. I (mom) was the donor for Colin. Although Travis is not deathly ill at the moment little things like an infection or the flu could be deadly for him.

24/08/2018

Finally done with appointments for the year in Chicago. Both boys are doing great. There are some labs they are going to recheck for Travis, just to make sure something funky isn't starting to brew. Liver labs were excellent, but his triglicerides, insulin, and kidney function were elevated. Next set of labs will include a recheck of all of these and if they are the same or worse then we will dig into them a little further to see what is going on. They told him just to watch what he is eating and that could help. All in all a great report and we are very happy.

17/07/2018

It has been quite a while since I have updated this page. I'm sure many of you are wondering how Moose is doing. He is doing great! Is now taller than his brother, has a job, Piggly Wiggly in Kiel if anyone wants to go and give him a hard time :), and will be getting his driver's license in a little over a month. We go to Chicago for his 2 year post transplant visit and ultrasound next month too. It will be his brother's 7 year post op! Seems crazy and like yesterday that we were going in for both of these surgeries. Trav is going to be a sophomore when school starts up and still has plans to go to college for some kind of engineering. Things are going extremely well and we hope and pray that this is the road we continue down.

13/02/2018

Good news!! The biopsy shows no sign of rejection!!! We are being released to the RMH and will hear from the doctor in the morning with the complete results and plan...if there is one. We are so happy and can't thank you all enough for the thoughts, prayers and well wishes. You will forever be a part of our family! Love and hugs to all!

Hanging with moose in recovery. He is doing fine and should be in a pod for the rest of his stay soon.
13/02/2018

Hanging with moose in recovery. He is doing fine and should be in a pod for the rest of his stay soon.

13/02/2018

We are at the hospital, the team has come in to go over everything and now we just wait for the case in front of us to be complete. The procedure will take about 20 minutes from start to finish, that includes them starting the IV and him going to sleep. The actual biopsy part takes maybe 5 minutes. Once he is done with this he goes to recovery to wake up. We will be here for at least 6 hours and should have the results this evening. Dr. Mohammad said he was definitely going to put a rush on the results since the liver enzymes have been continuoulsy elevated and because none of the other tests or scans have come back with a clear picture of what is going on. I will update again after the docs come back to tell us how things went.

12/02/2018

CT and Lab results are in... Good news is that the CT came back good and showed no blockages, the bile ducts looked great. The labs came back a tiny bit better but still no where close to where he should be. Doc wants to go ahead with the liver biopsy to hopefully rule out rejection. We have to be at the hospital at 6:45 tomorrow morning and his procedure is scheduled for 8:15. After the biopsy we will be at the hospital for around 6 hours so Trav can recover. We will have the biopsy results before we leave. If they come back good then we get to come back to RMH for the night and will be able to come home tomorrow morning. If they find something then he will be admitted for a course of aggressive IV steroids, and we go from there. Moose is still in good spirits and hasn't let this get him down at all. He knows he can't eat after midnight so he said he was going to the kitchen to make a little snack of Spaghettio's and left over pizza from last night... lol then he plans on eating dinner when it is ready in a couple hours. This kid sure can eat and I swear he has grown even taller since he was measured lasat time we were down here...that was only a week or so ago. For tonight we are just going to settle in, probably watch more of the olympics and take it easy. I might be able to talk Trav into going to the game room so I can kick his butt in basketball again, but we will see. I will update again in the morning and once we get the biopsy results back. Love and hugs from

12/02/2018

Labs and CT done. We are back at the Ronald McDonald house waiting for the phone call that will give us the results. Thank goodness I am able to work from here, it helps keep my mind busy... That and listening to Trav and Tony talk about the Olympics and which events are more fun to watch.

12/02/2018

Well here we are....first day of testing is about to get started. We are getting ready to head over to the hostpital for Labs and a CT Scan. Then we wait for the results. We are hoping they come back good and we are told we can come home, but know that there is a chance we may need a biopsy done tomorrow. After we get the results today I will update again and let everyone know if we are going to need that biopsy tomorrow. If that is the hand that is dealt to us we know it is all in His plan and that it will only make us that much stronger. Stay tuned for the next installment of The adventures of Team Moosey!!

03/02/2018

Okay, here is the plan for when we go back to Chicago. We will head down Sunday afternoon, the first appointment is at 9 on the 12th for labs then we go upstairs and get the CT scan done at 930. If the labs and scan come back good we get to come home. If the labs are elevated or if they see anything odd on the CT we go for the biopsy on Tuesday. If those results come back okay we will get to come home Wednesday morning, if no then he will be admitted to the hospital and will start a minimum of 3 days of IV steroids. That's all we know for now. Once we get down there I will keep this page updated with how his results are coming back and will keep hope that we will be home Monday. We will plan on being in Chicago for the week, but will be completely okay if this is just a blip that came up to keep us on our toes and we end up coming home Monday.

You would never know there was anything going on if you seen Trav today. His attitude hasn't changed and he is taking it all in stride. I think the fact that he has had to make so many trips to the hospital since he was a baby that these bumps in the road now are no big deal for him. They are just another day but with a slightly different routine. He understands what is going on but he doesn't let a little rejection scare get him down. He is like his Papa in that sense. Has the "why feel sorry for myself when I have so many other things I could be doing instead" attitude. Unfortunately those "other things" involve wearing a headset, exercising his thumbs and yelling at his friends while playing some game on his XBOX lol. He does grace us with his sarcasm and wit every once in a while... He gets the sarcasm from his dad... 😉

Thanks to everyone for your continued support and prayers. We have a great group of family and friends, who we now call family, and we couldn't ask for any more! You are all part of the Family.

02/02/2018

Here is the latest on Moosey. Ultrasound results came back yesterday and the pictures were not good ones. What they wanted to see was hard to. The good news is that there are no strictures in his bile ducts. The Bad news, there is what looks to be a clot in his hepatic artery (the main one to his liver) so the smaller arteries and capillaries are working overtime trying to do get the blood to where it is supposed to go. The doctor doesn’t think this is the cause for the elevated liver labs though. This means next steps are to have labs repeated and a CT scan done, so they can get a better picture of what is going on. They are shooting for this to be on the 12th of this month. If everything is back to normal and good we get to come home that afternoon. They are also scheduling a liver biopsy for the 13th just in case. If the labs come back elevated again and depending on what the CT shows we will proceed with the Biopsy, this is the only way they will be able to tell if he is rejecting the organ. If it gets to this point they will put a rush on it so we get the results back the same day. Depending on what those tell us, we could come home the 14th, if it does show he is in rejection, Moosey will be admitted to the hospital for at least three days of IV Steroids to try and reverse the rejection.
We always plan for the worst but hope for the best and if we find that he is rejecting this organ we will work through it day by day. Once I have the confirmed plan I will update again.

01/02/2018

I know it has been a long time since we have had an update on here... I have no excuse except for the fact that we have been living life. Things have been going well and we are in Chicago today for Trav's 18 month post transplant follow up. He is doing amazing. Grew 2 inches and gained 24 pounds since August. He got one more med taken away today and is now only on one. This is awesome news. We did have a little blip pop up over the last couple weeks which wasn't in the plan but we will continue to remain positive and start each day with a Thanks to God and a smile on our face. Trav's liver labs were elevated two weeks ago and with no recent illness or missed med doses the team wanted them checked again two weeks later. Since it happened to be time for this appointment we had them checked again down here. Again they were elevated so now their concern is that he may have a blockage or may be slightly rejecting the organ. We have an utrasound this afternoon and will know more when those results come back. It probably won't be until tomorrow sometime before I have anymore information. In the mean time we will keep our fingers crossed that if it is something it can be easily corrected. And we will continue to grow our strength with everything that tries to knock us down!

"The one who falls and gets up is so much stronger than the one who never fell" So true.

28/08/2017

Trav had his 1 year post transplant follow up last week Thursday. Everything went great. The team is really impressed with how well he is doing and with how much he has grown. He has grown 4 inches in the last year and they said he isn't done yet. He still has a lot of growing left to do. His labs came back perfect and we were able to stop two more of the meds he was on, one was to help prevent rejection and the other to prevent infection. He was also able to reduce his main anti-rejection medication too. We will have to get labs drawn again this weekend and then again in three weeks but those can all be drawn here and faxed down to Luries. He also had an ultrasound done to make sure everything was working as it should be and that came back great too. His bile ducts haven't changed since his last set of stents were removed and there is no sign of sludge build up, which is great news. He doesn't have to go back for 6 months, as long as his labs continue to come back normal.

Colin had his 6 year post transplant follow up Thursday as well, and is doing awesome too. His labs and ultrasound all came back great and they are very happy with his progress too. He doesn't have to go back for another year. They did stress the importance of him taking his meds on time and not missing doses. They find that once the kids move away from home and start college that a lot of times they get distracted and forget to take their meds when they should. This could result in rejection which, depending on the severity of the rejection, could result in being on more meds then he originally started with to the worst case of needing another liver because the treatment for reversing rejection doesn't work. Hopefully he takes this all in and sets an alarm on his phone for 9PM everyday. They also started the transition talk with him too. This is to get him thinking about where he wants to be seen as an adult. Children's will continue to follow him for the next couple of years, until he is out of college and then they will start transition meetings with the adult team of doctor's wherever he decides to settle down.

Great news for both boys and good reports from all sides. We couldn't ask for anything more. We have truly been blessed and can never give enough thanks to everyone who has been there for us through both transplant journey's.

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