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.

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.

11/18/2025
11/11/2025

Catherine and I had a nice visit with Gabrielle over the weekend. I haven’t posted as many updates recently since there haven’t been many big changes, which is probably a good thing. We had a nice time seeing Gabrielle, saw the Cleveland History Center, and made it back to MI safely despite the weather.

Gabrielle is continuing to make progress with her PT and OT. She has more control over her arms and right leg, and with PT’s help has been sitting on the edge of the bed, standing (even taking a few steps while supported) and sitting in the recliner. There has been some discussion about her going to more of a rehab facility when she is more stable since she should be getting more exercise than they can offer in ICU, but for now they are doing what they can while they heal the rest of her body.

Gabrielle has been trying to do more trach collaring (breathing high flow oxygen instead of being on the ventilator), but it has been an up and down journey. Some days she can do several hours, and other days only a little bit. She finished her course of antibiotics late last month and has been doing pretty good since, but her blood cultures have since come back for some additional bacteria. Infectious Disease has been holding off on starting more antibiotics to see how she does on her own. She hasn’t had much of a fever this week, but her lungs have been gunky, so they might restart antibiotics and do more respiratory cultures.

Gabrielle has otherwise been in good spirits. She appreciates all of the thoughts and well wishes. She can use her phone for video calls, and even though she can’t talk she does appreciate hearing people’s voices. The best part of our visit this weekend was when they tried her with the speaking valve, and she was able to say a few words to us! Catherine smiled so much when she heard Mama call her ‘little monkey’.

Gabrielle has another heart biopsy scheduled for tomorrow morning. It has gotten pretty routine at this point, but please keep her in your prayers. If we get good results, hopefully we can move to less frequent testing soon.

11/01/2025

Happy Halloween! Gabrielle was bummed out that she couldn’t spend it with Catherine this year. We were able to send her a lot of pictures of Catherine in her K-pop Demon Hunters costume, and video called her while we were out trick or treating though. Gabrielle was having art therapy at the time and was painting a nice Fall picture.

This has been a decent week for Gabrielle. She has been receiving more physical therapy while the team tries to figure out what is going on with her lungs and fluid balance. She was moved twice to different beds as the unit was being cleaned but is in a nice room now where hopefully she will be able to stay for a while.
Gabrielle finished her courses of antibiotics at the start of the week. I had been concerned since previously when they finished antibiotics, she would spike a fever and develop an infection. Since the surgery that she had at the end of last month was supposed to clear out the source of the infection, they were optimistic this time. Unfortunately, Gabrielle did develop a bit of a fever and some low blood pressure + tachycardia, so they put her back on antibiotics for now until they can figure out what is going on. If the most recent cultures come back negative and she improves, they might be able to stop antibiotics sooner.

Meanwhile, they have continued to fuss with Gabrielle’s dialysis settings, which could also be part of the issues she has been having. She has been on continuous dialysis this past week, but they did pause it last night since they were concerned about removing too much fluid. Dialysis also messes with her sodium and potassium levels, so they need to do frequent labs to monitor those and provide replacements if she is out of balance. Gabrielle says that she has been feeling ok despite all of this.

Otherwise, Gabrielle has been getting out of bed more with the help of PT. She still requires assistance to get up, but they have been getting her into a recliner for a few hours on most days. She also was able to sit on the edge of the bed unaided, which will help with her core muscles. She is getting more strength in her arms and legs as well.

As always, thanks for all of the prayers and support! If you want to send cards, please send them to our house at:

3200 East Howe Rd.
DeWitt MI 48820

10/25/2025

Gabrielle's heart cath/biopsy went well today. Everything was very routine. The doctors said that her heart is not showing any signs of rejection! They are going to do a cardiac echo at some point to follow up on some things they found with the blood flow, but everything is looking good.

Since Gabrielle was recovering from the cath today she was not able to get out of bed for PT. She is making a lot of progress with her movement. She is getting more control moving her right arm and her right leg. She is starting to be able to move her left leg better too.

For the past week, Gabrielle has been getting intermittent dialaysis instead of continous, which is an important step for getting her out of the ICU. They did need to put her back on continous today in order to remove some fluid, which should help with her breathing. They should hopefully be able to get her back to intermittent soon. Her kidneys are starting to show some signs of recovery.

Gabrielle had a special visitor today - Larry the therapy dog. He is a 130 lb Leonberger who is able to go around to patients at the hospital. Gabrielle was able to pet him and give him some treats.

Thank you for the prayers and encouragement! Some cards being sent to Gabrielle at the hospital have been returned to sender. If you would like to send a card, it's probably best to send it to our home address. I promise it will get down to Gabrielle! Our address is:

3200 East Howe Rd.
DeWitt MI 48820

Thanks,
--Greg

10/24/2025

I havent had a chance to post an update this week, but all is going well. Gabrielle has another heart cath/biopsy this morning. Please keep her in yohr prayers!

Address

Dewitt, MI

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