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.

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!

10/19/2025

Catherine and I are down in Cleveland this weekend visiting Gabrielle. She is continuing to make good progress. With physical therapy's help, she has been able to sit in a recliner several times. She is also able to hold her own weight while standing with the lift team's help. She is going to need a lot of rehab to regain her independence, but everything is moving in the right direction. She has been doing more breathing off the ventilator and they have even tried a speaking valve. She has been having a difficult time saying things after all that she has been through, but her lungs are getting stronger. She is getting better at moving her arms and legs, although she is still having difficulty with the left leg.

Gabrielle's labs have been looking good. This is actually the first time I've seen her platelets fall within the normal range. They are trialing her on intermittent dialysis, which so far seems to be going well.
We are still hoping that her kidneys will recover. But in the meantime, being off of continuous dialysis will help get her out of the ICU.

Meanwhile Gabrielle is trying to stay mentally strong and keep herself occupied. Now that she is getting more strength in her hands, she should be able to use her phone and tablet soon. She did get moved up to the 6th floor, which is still an ICU, but her room has a little more light than before.
She is grateful for all of the support from family and friends. Please reach out if you want to get in touch with her!

10/12/2025

Gabrielle is continuing on her road to recovery, slowly but surely. It's difficult to say where she is sometime because it's not a linear path that she is on. Sometime one thing is getting better while something else is getting worse. This week has been pretty good though, and she got to visit with some family today!

She had her (routine) right heart cath and biopsy on Friday. All went well with the procedure, and from what we have heard, the results are looking good. The procedure was supposed to have been on Tuesday but got delayed due to scheduling issues. This was tough for Gabrielle since her Mom and I were both working on Friday and were not able to be there with her. The doctors were able to help with her anxiety and called us as soon as the procedure was done to let us know that everything was ok.

The neurology team came by during the week to follow up on why Gabrielle is still having difficulty moving her legs and her right arm. It is possible that it could be related to some minor strokes that she suffered while on ECMO, although at the time the doctors didn't think that they would cause any noticeable effects. Here difficulties with movement are also probably related to her being in bed so long without any exercise. She is continuing to do PT and OT to build back her strength and keep her moving. She is also working with respiratory to strengthen her lungs so that she can get off the ventilator, which will be important for getting her out of the ICU.

Thank you for all of your prayers and support!

10/05/2025

I haven't posted in a while because there hasn't been a whole lot to report. Gabrielle is continuing on her path to recovery, slowly but surely.

There isn't much to report medically. The doctors believe that what they saw near her liver is a dilated duct that might be related to her gall bladder (removed as a routine step during the liver transplant), but since her liver numbers are looking good they decided not to do any intervention. If they did need to treat it, they would do so endoscopically with a stent, which doesn't sound like it would be a big deal. They did manage to get her off the insulin drip and onto subcutaneous insulin, which is a step up. They have been trying to get her changed over from continuous dialysis to intermittent, but haven't been able to so far. Aside from filtering her blood, dialysis is maintaining her fluid levels, and the team wants to keep those carefully controlled to support the rest of her body. They are working to strengthen her lungs to help get her off the vent. She is still getting slight fevers sometimes, but she is on a wide spectrum of antibiotics and is being closely monitored by the infectious disease team.

The transplanted heart and liver are still doing good. She will have another heart biopsy this week as part of post-transplant monitoring.

PT and OT have been coming by and helping her sit up on the edge of the bed and sometimes in a chair. She is still really only able to use her left arm, but is getting some strength in her right arm and right leg. She can't speak because of the vent tube but tries to anyway. Otherwise she is still using gestures and her letterboard to communicate.

Thanks as always for your support and prayers! It has been a long journey, and there is still a long way to go. Thank you for being there with us!

09/28/2025

After a few days at home, Catherine and I got to visit Gabrielle today! She is doing well and getting stronger. She is able to do more with her left arm and her other limbs are getting stronger as well. Physical therapy has been getting her up in a chair or sitting at the edge of the bed. This is painful for her, but is helping her get stronger and move around more.

Gabrielle is continuing to fight off some infections and pneumonia. This has been throwing off many of her labs, but antibiotics seem to be keeping everything controlled. They are also monitoring something that they saw on one of her scans near her liver that is probably a pocket of fluid. So far they are just monitoring it and did an MRI today. No results yet. Her liver function labs are looking okay. The most recent heart biopsy continues to show that her heart is doing well and that there is no evidence of rejection.

Gabrielle is doing better using a letterboard to spell out what she needs and is working hard to communicate with her nurses and doctors. She gets frustrated a lot because she is trying to say things but it is hard for others to understand. She still cannot talk due to the tube in her throat. She is also stressed out because she is somewhat allergic to many things that are commonly found in hospitals like bleach and some adhesives.
When she was in a step down unit, they were able to make more allowances for things like bringing in her own sheets, but in the ICU, they are not able to do that.
They have been giving her some medications to make her more comfortable.

09/24/2025

Update - the surgery went well! They were able to clean a lot of gunk out of her chest and wash it out, which should hopefully clear up the infections. It might also help her breath better. Gabrielle tolerated the procedure well and was smiling later in her room. The surgeon seemed pretty happy with how it all went. She has a few drain tubes in to keep the area clear.

Earlier in the day she had a birthday visit from her brother Tom and sister-in-law Amber. PT also came be (pre-surgery) and had her sitting on the edge of the bed for a few seconds. Gabrielle was pretty exhausted by the evening, but should be able to get back to recovering now.

09/23/2025

It's Gabrielle's birthday today, and she is turning 40! I'm hoping that we can plan something big to celebrate once she is out of the hospital. She has been in good spirits this week.

She had another planned heart cath and biopsy yesterday which went well. We won't know results for a few days. Gabrielle was able to remain awake during the procedure and was smiling afterwards.

Gabrielle will be having surgery today (happy birthday to her :( ) to deal with the infection in her chest. The surgery is called a washout*, which involves making a few cuts in her side and washing out the infected fluid and debris. The surgery will hopefully clear up the source of the infection so that it does not recur. There is some risk to the procedure since they are working close to the lung and her platelet levels (and other levels) are low. Please keep her in your prayers! Hopefully soon she will be recovering and able to enjoy birthday messages!

* Edit - it's not VATS, it's an open surgery. VATS (Video-Assisted Thoracic Surgery) uses smaller incisions and cameras, but the surgeons aren't able to do that in this case. They do plan to go in through her side rather than reopening her sternum.

09/21/2025

Following on my last post, the doctors have been busy over the last few days working on tracking down the source of Gabrielle's infections and figuring out the safest way to deal with it. They suspect that it is coming from a pocket of fluid outside her lungs that has been there since her earlier surgery. Unfortunately, since it is close to the lungs and she has bleeding risks already, there isn't a simple way to treat it. Also, the fluid could have partially solidified as the body absorbs the liquid part, meaning that just draining it would not necessarily be sufficient. A surgical cleanout would be the most thorough method, but after everything that she has been through, the surgeons are very worried about the risks.

After much discussion and consultation between the teams, the doctors decided to insert a small drain tube into Gabrielle's side in an effort to extract some fluid to send to the lab. If they do pursue a more invasive approach, they want to make sure that it is necessary before taking any risks. The tube was inserted this afternoon with CT and Ultrasound guidance, and it sounds like they managed to get a sample. Fortunately, Gabrielle is doing ok on antibiotics for now, so dealing with the source can hopefully wait a few days.

Otherwise, Gabrielle was in good spirits. Even with some sedation she is still doing her best to spell out words and make her wishes known. She is still only able to move her left arm, and that is still pretty weak, so communication is difficult. She is very aware of what the doctors are saying and is able to weigh in on her treatment. This is obviously a stressful time for her and for all of us, but she is handling it as well as can be expected. She is tough! They are going to try to get psychiatry in to help with her anxiety. She is also able to resume art and music therapy when she is alert.

Funny story - when Gabrielle was trying to spell out words for me, she kept gesturing at her bed sheet and spelling 'ARM BLANKET'. I kept getting confused and asking if she wanted me to pull the blanket up over her arms, and she kept shaking her head angrily. Fortunately, the nurse figured out that she meant 'WARM BLANKET' and got her one.

Thanks for all of the prayers and support!

09/19/2025

It has been another few up and down days for Gabrielle. Yesterday was good - she did more PT an OT and was switched from the ventilator to high flow oxygen for a little bit. She was very communicative with me in the evening. She has been getting better at spelling out words on her letter chart and was using the call button to get the nurse when she needed things. She was able to video chat with some family members too.

Early this morning though, her temperature spiked and her oxygen saturation started falling. The team was able to suction some gunk out of her lungs and giver her some sedation to keep her heart rate from getting too fast, but they are very concerned about infection. Her fevers seem to return each time she finishes a course of antibiotics, so they are thinking that there might be a source of infection within her body. There is some fluid near her lungs that has been there since her surgeries, but so far the surgeons have been reluctant to intervene, since it wasn't causing any issues. Now, they are thinking that could be part of the infection, so they are debating if they are going to do another procedure to remove it and clean out the area. Hopefully they will be able to come up with a plan of action tomorrow. In the meantime, she has been sleeping under light sedation. Please keep her in your prayers!

Speaking of prayers, we are so grateful to our church for holding a silent auction last night to benefit Gabrielle. It was great that so many people were able to come out!

09/16/2025

Gabrielle has continued to make some small improvements this week. Her fevers appear to have lessened (knock on wood), but the doctors are keeping a close eye on them. She is very alert when she is awake and has been shaking her head, pointing, and giving thumbs up or down to answer questions. Unfortunately she can really only move her left arm for now, and that is still pretty weak, so it's hard for her to communicate. I can tell she is getting frustrated!

She did get the ok to start PT and OT tomorrow, so hopefully that will help her get her strength back. The respiratory team is slowly working on getting her lungs stronger. No procedures planned anytime soon that I am aware of.

Thank you for keeping us in your thoughts!

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Dewitt, MI

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