Gabrielle's Journey to Four Chambers

Gabrielle's Journey to Four Chambers I am a 39 year old HLHS warrior. This page is going to discuss my journey on the road through the organ transplant evaluation, leading up to the transplant.

02/13/2026

This has been a pretty good week for Gabrielle! She has been awake and alert, and her labs have been looking good. Her heart and liver tests from last week all came back unconcerning.

Gabrielle’s main challenge recently has been her pneumonia. It came back pretty strong after she finished her last round of antibiotics which led to sepsis. The team restarted antibiotics and started her on medications for low blood pressure, and she has been responding well this week. She has not been able to get off the vent or do much physical therapy, but she has been breathing better and requiring lower settings on the vent. They were able to wean her off of one of the blood pressure meds today and are hoping to get her off of the other one soon. It remains to be seen how she will do once she finishes this course of antibiotics, but hopefully she will have a respite from the pneumonia and will continue to heal.

Liver function tests are looking good too. After the bile duct procedure last week her numbers have been coming down. They get checked every day, and the team is quick to make adjustments if they see them rising.

Catherine and I had another nice visit with Gabrielle over the weekend. Catherine even got to snuggle in bed with mama for a bit! Thank you all for your continued prayers and support!

02/04/2026

Gabrielle is officially over 6 months out from her transplant, and while this hasn’t been the journey that we had hoped for, we are thankful for all of the prayers and support that we have received along the way.

The past week has been another rough one for Gabrielle. She has been requiring more breathing support and more medications to support her blood pressure. The doctors aren’t sure what is causing the breathing difficulties and have been conducting a variety of tests. The liver biopsy from last week came back good. Yesterday, the team did another heart cath and biopsy to evaluate her heart function, and from what we have heard, that was looking ok as well. Today they did a procedure to examine her bile ducts, which did find some issues that could have been elevating her liver enzymes. Fortunately they were able to fix those issues during the procedure, so hopefully those numbers should start trending downwards.

Gabrielle has been retaining more fluid again, which could explain some of the breathing difficulties. They have restarted her on antibiotics after a brief pause. The pneumonia is hard to diagnose, since she will probably always test positive for it regardless of whether it is causing symptoms. She has been on continuous dialysis for the past week, which is gentler on the body than intermittent dialysis.

This has been a hard time for our family, especially with the cold and winter weather making travel difficult. Her mom brought back a lot of the items that Gabrielle had accumulated in her room, and Catherine was upset seeing Mama’s things here without Mama. Still, we are doing our best to make it through all of this. We have been keeping up with fun things at home like going to the mall and the Science Center, and do our best to celebrate holidays and birthdays as a family. Thanks again for all of the support and friendship that you have all provided! It means a lot to Gabrielle and to our family.

01/26/2026

It has been a rough week for Gabrielle. A week after finishing her last round of antibiotics, she started having some low fevers and difficulty breathing. They have restarted antibiotics and are waiting for blood and respiratory cultures to come back. Meanwhile, she is back on the continuous dialysis since that is easier on her system than the intermittent version.

The good news is that she seemed more alert today than she had in the days before. Her liver numbers have been coming down on their own and are close to the normal range. The cardiac biopsy that was scheduled for Friday was postponed until she is feeling better. Also, the MRI of her liver came back without any abnormal findings!

We hope that everyone is staying warm and safe this weekend!

01/21/2026

It has been a while since I posted an update, which is mostly because there hasn’t been much to report. Gabrielle is doing about the same that she was at the beginning of the year. She has enjoyed visits from family and friends and continues to enjoy hearing from folks!
Gabrielle is still on the ventilator part of the day but has been doing more ‘trach collaring’ while she is awake, often going for 12 hours. Although she is tolerating dialysis well, she is retaining fluid, which makes it more difficult for her to breathe. She has been able to spend more time off of the ventilator as they have gotten more fluid off, which should help her lungs to get stronger. She finished her last round of antibiotics last week and has been doing well so far. Gabrielle was able to use the speaking valve for a few minutes over the weekend and was able to say ‘I love you’ to Catherine over the phone!
Gabrielle’s liver numbers continue to fluctuate. Each time that they start to go up the doctors do another round of steroids, but once the steroids finish, they start to go back up again. They might do an MRCP (basically an MRI of the liver and surrounding regions) tomorrow to get a better idea of what is going on and see how they can treat it. Gabrielle is also scheduled for her next cardiac biopsy on Friday, and depending on the results they may do another liver biopsy afterwards.
It has been a long haul, and we are trying to be there for Gabrielle as much as we can, considering school, work, and the other demands of life. Winter is hard with the bad weather and the flu going around. We hope that after winter ends, spring can be a season of healing!

01/05/2026

Catherine and I spent Winter Break in Cleveland this year, visiting Gabrielle. It was a bit of a non-traditional holiday season, but we made it work! My parents were able to come down for New Years to visit and hang out with Catherine. This might have been the longest that Catherine was away from home, but she did well.
Things have been up, down, and sideways with Gabrielle’s health recently. The team needs to balance different factors which makes progress slow and requires more discussion. Her liver function tests (LFTs) have been bouncing around lately (indicating possible rejection), and her respiratory cultures are still showing some bacterial growth. The treatment for liver rejection is increased immunosuppression and steroids, but both make it easier for bacteria to grow. Gabrielle had another liver biopsy today (which went fine from a procedure standpoint) which should help determine whether there is any more rejection and will inform the next steps in treatment. Increased LFTs could also be caused by other processes, which the biopsy should help to clarify.
Side note – organ rejection isn’t an all or nothing process. Without any intervention, the immune system will recognize the transplanted organ as foreign and attack it, which is why transplant patients take immunosuppressant drugs. Acute rejection usually happens within a few months of transplant and is expected in some degree with almost all patients. It can be treated with a combination of increasing the immunosuppressant dose and giving steroids to repair the damage. Chronic rejection results from an accumulation of damage over the years and is harder to treat. Fortunately, medicine has gotten better at matching donors with recipients and at detecting and managing symptoms of rejection.
Gabrielle has been on intermittent dialysis (IHD) for the past few weeks and has been tolerating that well. The doctors are not very optimistic about her regaining kidney function at this point. To get out of the hospital, she will need to be tolerating IHD without any blood pressure support, and the team will need to be confident that they are able to remove enough fluid. Even though they have been hitting their targets this week, Gabrielle has been gaining weight, indicating ongoing fluid retention. They are going to try doing IHD more frequently and see if that helps.
It is difficult being in the hospital for such a long time, especially around the holidays. We did our best to keep up our holiday traditions, including opening gifts in the ICU, watching the ball drop over video call, and having Gabrielle on the phone when we opened more gifts at home. Gabrielle has definitely been dealing with anxiety and depression. She can’t drink yet but has been eating ice chips and gets mad at the nurses when they don’t bring her ice chips fast enough. With flu season heating up, we need to be a little more careful about visiting, but we are still committed to being there for her as much as we can!

12/23/2025

Merry Christmas! It has been almost 5 months since Gabrielle’s transplant, and she is still fighting!

Gabrielle has been doing more breathing off the ventilator this week. The main factors keeping her in the ICU are the vent and the dialysis, and if she continues to go good with both, there is a chance that she could get moved the floor, which would be a big step forward. They have been trialing intermittent dialysis a few times this week, which has been going well, but they need to make sure that she can keep her blood pressure up without meds in order to say that she is stable. The doctors still aren’t sure if or when her kidneys will wake up so that she could be off dialysis entirely; it is hard to predict, but they think that resolving her other health problems could help with the kidneys as well.

Gabrielle’s breathing was a little worse yesterday and today. Although she hasn’t been showing major signs of infection, they did find some bacteria in her lungs. The doctor said that this could be ‘colonization’ which could become a more serious infection if untreated. They decided to restart her on antibiotics today as a safety measure and will be monitoring closely for any changes.

Her liver function numbers went up earlier in the week but seem to have been coming back down, although they remain elevated. They are going to do another biopsy tomorrow to get more information. The heart team says that her heart is in good shape and is showing very little rejection.

Gabrielle still has a long way to go. We are starting to talk about the next steps after she gets out of the ICU and the hospital, although it will be difficult to know what to expect until she has recovered more. She may go to rehab to get more intensive physical therapy, but that hasn’t been decided yet. In the meantime, we are being there to support her and keep her spirits up!

Have a happy holiday season!

12/13/2025

There have been a few more ups and down for Gabrielle this week.

About two weeks ago, the team made the decision to lower her immunosuppression levels to help her body fight off infections. This week though, her liver function numbers started to rise, which generally indicates a problem with the liver. The liver biopsy that they did the other day indicated moderate levels of rejection, and the cardiac biopsy found something similar with the heart. Fortunately, the level of rejection doesn't appear to be that severe, and they are treating it by increasing her immunosuppression target and giving her a course of steroids. Her liver numbers did come down a little today. Aside from the labs, Gabrielle hasn't been showing any symptoms of liver or heart issues.

Of course, raising the dose of immunosuppression does increase Gabrielle's risk for infection. She finished up her latest course of antibiotics a few days ago, and so far, seems to be doing ok. The team will keep monitoring her closely for signs of reoccurrence.

Gabrielle has been doing better with her physical therapy and her breathing. She has done more standing and is moving around more in bed. She is alert and doing more art. She also has been spending a lot of time on the trach collar instead of the ventilator, which is important for strengthening her lungs. For now, she is still on the continuous dialysis. Her anxiety has been high, but she has been enjoying visits from family and doing some therapy at the hospital.

Thanks as always for your prayers and support! It's hard, especially around the holiday season, but knowing that we have such a wide support system makes it easier.

12/11/2025

Quick update - Both of Gabrielle's procedures went well today! We probably won't get results on the biopsies for a few days, but it sounds like the cath showed that her heart function is good. They were actually able to do the liver biopsy in her room.

12/10/2025

Keep Gabriel in your prayers tomorrow as she has a liver biopsy and a cardiac biopsy scheduled. Both are fairly routine but as always there can be some risks with any procedure.

Gabriel has been doing pretty well this week in terms of alertness and energy. She has been doing better communicating and with physical therapies help has been getting out of bed and getting into her chair again. You may have seen her video on Facebook of her doing some leg exercises. She has started to do some trach coloring again and was able to do it for several hours today with her mother's encouragement. It's a little scary for gabriel, but it is helping to get her lungs stronger and get her closer to being off the ventilator.
Gabriel's liver numbers have been going up this week. The doctors aren't sure what the cause is but given that she is post transplant they want to get to the bottom of it quickly so that they can provide treatment as necessary. From what I have read elevated liver test values can be due to issues with the transplant or issues with medication or non liver factors. They have already done some ultrasounds and we'll get more information from the biopsy tomorrow.

It sounds like Gabriel's lungs are starting to do better. She hasn't had any significant infection related events in the last week. She was due to finish one of her antibiotics today, so we will see you in the next few days whether there is any evidence of infection reoccurrence. Gabriel is still on the continuous dialysis and I am sure that they will start trialing intermittent at some point if she remains stable.
It has been difficult for Gabriel being in the hospital this long and it is even harder for her to be there during the holiday season knowing that she will most likely not be home for christmas. Nevertheless, we have decided to be flexible with our holiday traditions and celebrations, knowing that family is the most important thing. We hope that everyone is staying warm this month and hopefully not having to do too much traveling! Happy holidays and thank you for your continued prayers and support.

12/04/2025

Gabrielle has been having some challenging days recently, but she appears to be on the up-swing today. She was very tired over Thanksgiving, which we initially attributed to her work in PT the week before and the switch to intermittent dialysis. By Sunday she was showing signs of confusion and agitation, and her handwriting was too shaky to read. The medical team switched her back to continuous dialysis added another antibiotic, and today she seemed to be doing a lot better. Her lungs are still pretty gunky on her scans, but she hasn’t been having any fevers, and the antibiotics still appear to be working to fight off her other infections. We are hoping that with rest and time she will continue to bounce back and recover.

Complications aside, we had a nice family visit with Gabrielle over Thanksgiving. Catherine and I went down with our sister-in-law Amber and her son Gunner’v. He and Catherine are close in age and had a lot of fun together. It’s hard visiting the hospital as a kid – especially the ICU – but they did great, and Gabrielle enjoyed seeing them. They also got to take a trip to a candy store!

It's very difficult for Gabrielle to be away from home, family, and friends for so long, especially with the holidays coming up. Thank you so much for your prayers and support this year! It has been a long journey, but we are making our way through it as best we can.

11/29/2025

Happy thanksgiving! Catherine and I as well as our sister-in-law Amber and nephew Gunner V have been down in Cleveland with Gabriel for the holiday. The weather held out until the last 20 miles when we drove down. Cleveland has been getting some snow but we are able to get around and are hoping that the weather holds out when we go home.

Gabriel is doing okay this week. You may have seen the videos she posted where she is taking some steps and getting a little bit of leg exercise with physical therapy. She has moved to intermittent dialysis which she receives a few times per week. She seems to be doing okay with it so far.

Gabriel still has the pneumonia but is doing okay. The Infectious Disease doctor was concerned because she didn't seem to be responding very well to the antibiotics, but further testing showed that the antibiotics are effective against the bacteria. They did put her on a second antibiotic and have reduced her immunosuppressant medication to help her immune system.

I brought down a whole stack of cards that we have received over the last week or two. Gabriel was very excited to read through them and see notes from her friends and family. Thank you for helping to keep her spirits up!

11/19/2025

Gabrielle is continuing to progress in her recovery! There have been a few ups and downs, but overall it sounds like things are moving forward.

Everything went well with last week’s cardiac biopsy, which they do to check for rejection. The procedure itself was very quick and simple, and the results continue to show very low rejection levels. Her next biopsy will be in a few weeks, at the beginning of December. If they continue to show good results, hopefully the frequency will continue to go down.

Gabrielle has been making slow but steady progress with her movement. As you might have seen on her page, she was able to stand for up to a minute with assistance! Every day, PT is coming in and helping her sit on the edge of the bed, take a few steps to a chair, and sit in the recliner for a while. I think that getting out of bed and moving around is definitely going to help with the rest of her health issues.

Unfortunately, Gabrielle has been dealing with pneumonia again. There has been a continuing pattern since the transplant where she is on antibiotics for a few weeks, does well, and then starts to get sick again when they take her off. This time they noticed that she was having difficulty off of the vent, and respiratory cultures showed more bacterial growth. It isn’t clear if this is a new infection or if the last one didn’t get completely cleared up. Part of the danger of being in the hospital for a while is an increased chance of developing an antibiotic-resistant infection like this one. Fortunately, the cultures allow them to select antibiotics that will be effective. Gabrielle has been back on antibiotics for a week and seems to be doing better.

There has also been more back-and-forth battle with dialysis. Gabrielle was on intermittent dialysis (PIRRT) for a while but was put back on the continuous dialysis (CRRT) due to concerns about her breathing and fluid levels. After a week on CRRT, they tried just doing it at night, which was successful. I believe that they are resuming PIRRT today and will continue to monitor her kidneys and fluid levels.
Gabrielle is still in the ICU and will be until at least she is able to be off the ventilator for long periods of time and she is off the CRRT for good. It’s a slow process, but we are glad that they aren’t rushing anything! Gabrielle got to enjoy a visit from a friend last weekend, and will be having some family coming down for Thanksgiving week.

Thanks for all of the support! As always, please send cards to our house and we will make sure that they get to Gabrielle.

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Dewitt, MI

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