53: Amanda & Patrick Reck -Life After Their Son’s Heart Transplant.

Amanda and Patrick talk about their son who has been through two heart surgeries and a heart transplant.

They talk about their son being born and how they were unaware that he had congenital heart disease.

They talk about the first 24 hours in the hospital and then how their son coded while being transported to UVA.

In addition they talk about the first heart surgery and how their son recovered.

Moreover, they share how they parented the other kids while in the hospital.

They also talk about receiving help from other parents and how the hospital helped them get additional services to care for their son.

Amanda and Patrick both share that after a heart catherization their son developed a staff infection.

They talk about the challenges and complications that the staff infection caused.

They also share how the staff infection caused their son to have several strokes.

Plus, they talk about their son having the Glenn heart surgery.

Moreover, they share how their son experienced heart failure and had to have a heart transplant.

They also talk about going to marriage counseling to process what they both had been through together.

Finally, both Patrick and Amanda talk about what it is like parenting a child post heart transplant.

Join us for this episode as Amanda and Patrick share their story.

 

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Podcast Transcription

Chuck: Today on the podcast we have Rita and Kelly and I. We're all here. So hello to both of you. How are you all?

Rita: Fine, Chuck.

Kelly: Great. Thank you.

Chuck: Well, today we have the privilege of having Amanda Reck with us. And Amanda's got a little boy with congenital heart disease and she also has four other children. So she's going to talk about her journey with her son and how she managed being in the hospital and parenting four other kids while she's doing this. So welcome, Amanda. How are you?

Amanda: I'm pretty good this morning.

Chuck: We're super excited you're here. So let's just jump into this and talk about your pregnancy, when you first found out about your son and that he was going to have congenital heart disease.

Amanda: Sure. Absolutely. And my husband, Patrick, just joined us, too.

Patrick: Hi, everybody.

Chuck: Hey, Patrick. How are you?

Patrick: Doing all right.

Chuck: We're super glad you're with us. This is the first time we've had both parents on at the same time. So this is great.

Amanda: Awesome. My pregnancy with Gabriel, honestly, was pretty easy, pretty typical as compared to my four other pregnancies. I actually had a total of six pregnancies, my first pregnancy and then a miscarriage. So then my next two pregnancies were considered high risk just to make sure that I didn't have some of the same issues. And then after that I just went on to having normal no-risk pregnancies. With Gabriel, I did have three ultrasounds. And everyone was just ecstatic that we were having a boy because we had four daughters. The heart was beating fine. But no one, I guess, honed in enough on the heart to notice that there was anything wrong with it.

So we assumed that he was perfectly healthy. I think that is part of just a big issue today that doctors don't take enough time to really go through and look at the heart, to measure, to count, to make sure there's four chambers, especially if you do already have as many kids as we did which was four healthy daughters. So it was, "Okay, the heart's beating. Oh, look it's a boy." And that was it. So when I went into...and the other thing is I never go into labor on my own so I always had to be induced.

So we had scheduled his inducement date which was actually March 11th. And all of my other children were born before (evening) - the latest one I had was 5:34 in the afternoon. All of them were 5 o'clock, 3 o'clock, 2 o'clock, rather fast inducements. (With) Gabriel, it's 11 o'clock at night. I'm going out of my mind, never had a labor like that before. I kept telling them that I felt like he was coming out and coming back in and coming out and coming back in. Finally, the doctor really checked and the cord had been wrapped around his neck, which I didn't know any of this until after he actually was born. And then my husband and sister and other people that were in the room told me. And when he came out, he actually was quite blue and that's when the doctors and everyone said, "Well, the cord had been wrapped around his neck so he will be this color for a little bit."

So I was just assuming his color was due to the cord being wrapped around his neck. But then he wasn't like my other four babies did not want to wake up or eat. He just wanted to sleep. That was it. And I was like, "Never had I have a newborn just being born that just wanted to sleep." And it was like I kept asking and they're like, "No." And I asked about the blue color and they're like, "No, it should just be a couple of days." And then everything changed when he was 24 hours old. The nurse came in to do the hearing test and thank the Lord, just that January, the governor of Virginia had passed a state law where it was mandatory to do a pulse oximeter test.

And his…they put one on his hand, one on his foot. The hand was normal, was 99, 100. But his foot was in the 40s and the nurse was like, "Well, let me wake him up. Let me…" (but she) wasn't telling me what was going on and she tried it like three times in the room. And each time, you could see her face just kind of sink. She's like, "Okay, well, I need to take him to the nursery." I was exhausted from being in labor for almost…well, actually, over 24 hours at that point. And so my husband went with her. And then finally I got up and managed to get down there, too.

And the doctor had come in and found out what the pulse oximeter test was doing, that the one was reading in the 40s. That's not good, not good at all. And the doctor picked up the little pulse oximeter battery pack thing and was like, "I think the batteries are just dead on it. We can wait till morning to have the person come in and check his heart, to do like an ultrasound, you know. And we'll see what's going on." And he puts the call in and that person apparently was on vacation so no one could even come and do a scan or look at him until apparently like later in the day that day. So we're talking…he was born at 12:04 midnight when the nurse came in for 24 hours. So this is 1 o'clock in the morning when this is happening.

The doctor left the room to try to go do other stuff. And the nurse kept like opening her mouth to wanna say something. And I was like, "You wanna tell us something." I was like, "Please tell us. This is our child." And she said, "That test is measuring the oxygen and explained it to us and said, "What this is saying is he needs to see a cardiologist. If something is wrong with his heart, we cannot help him here." And she said, "When that doctor comes back in, please, please, ask, demand to be transferred to UVA." And that's all we needed. It was like, "Okay."

So the doctor came back in and we said, "We don't feel comfortable. We want to go to UVA." And he luckily agreed. At that time it actually was a different doctor because that doctor had went home and there was another doctor on call. So she's the one who was like, "Okay, absolutely. I'll put all the paperwork in." It was maybe an hour, hour-and-a-half later the UVA transport team showed up. (It was) definitely hard to go through that because we never went through anything like that before. And I still had to wait another, oh, my gosh, hour maybe to be discharged. So Gabriel was transported ahead of us.

On the way to UVA, we get a phone call from someone at UVA that let us know that he had arrived and that he had coded on the way. And we're like, "Okay, coded?" I'm like, "What does that mean?" And that he had died and they brought him back. And we're just like, "Oh, my gosh. What is going on?" And I'm thinking the whole time and so was my husband that it had to do with the cord wrapped around his neck. We're just thinking it had to do with the cord that cut off oxygen and we're not thinking it really has anything to do with his heart.

And then my husband...I'd had other complications so I was not allowed to walk for like two weeks. So he wanted me to try to ride around in a wheelchair and so he pulled me up front and they helped me get in a wheelchair. And my phone rings again. My husband is parking the car and it is one of the interns calling to let me know that they've done a whole bunch of scans, you know, ultrasound pictures and all this stuff and he's telling me that, "Your son has…we're positive it's hypoplastic left heart syndrome, that he's gonna need immediate surgery or he will die." Like he's telling me all this at really fast speed and my husband is not there and I'm in the front lobby of the hospital just bawling my eyes out when my husband shows up.

And I can't even like fill it all out. Like I'm trying to. I'm like…and he's just looking at me like, "Okay." (It was a) very, very crazy 48 hours from the time going in to be induced to then having him. And then at that point, it was maybe 30...

Patrick: Thirty-six hours…well, 36 hours old is when we arrived at UVA.

Amanda: So 36 hours old is when we found out that he had something major wrong with him. Hindsight, when I look back now, I'm kinda thankful that I did not know prenatal. I think it would have been harder on me especially with having the four other children. And I just know how I am and obsess about things. And I think I probably just would have wanted to sit in my room until he was born and wouldn't have been able to function. So I think with all that that… I do have a lot of faith in the Lord and I think that was kinda Him going, "No, you can just wait. He has his issues but we're not gonna let you know until you need to know." Once at UVA, we went up to the PICU or NICU…which one was he in?

Patrick: NICU.

Amanda: He was in the NICU. And they did let us see him and it was very hard because they had a big piece of paper that was like above his head that said that he arrived and it actually said "Double coded black" above there. And I'm like, "Okay." And they're like, "That has to stay up there so we know that he's a priority in the NICU," which we found out then too that it was the…when your end...

Patrick: That was a valve [crosstalk]… Your blood flow to the mother via the umbilical cord, that everything that basically was keeping him alive from birth up until the moment his pulse ox was dropping was the fact that his blood was mixing from oxygenated and non-oxygenated and being distributed through his body via that little…essentially, it's a hole that's what allows the mother's body via the umbilical cord to distribute oxygenated blood to the child. And as you're born, that little access way begins to close off and that's why his pulse ox was dropping was that was closing on us.

Amanda: So they took us to a conference room and we were in there with several doctors. And they had binders and they had diagrams and some pictures of his actual heart and began to color and draw and cross stuff off and say, "Okay, this is what his…what a normal heart is supposed to look like. This is what his heart looks like." And it went into more detail about hypoplastic left heart syndrome. And in his case, he pretty much did not have either…the left side of his heart. So in all intents and purposes, he really did have half a heart and explained to us there was technically three options. At that point there were two options, and it was do nothing and it would be like compassionate care because he would pass away. Or you could go the route of surgeries.

And then with surgeries, they explained that it was a three-step process. You would have a Norwood, a Glenn and a Fontan and the first one he would have in the next few days. They also explained that by taking the surgery path that at any point there could be complications where he might need a heart transplant or there could be complications where they might not be able to proceed at all. So that was…they really went into explicit detail about all of the options, really tried to weigh all the benefits and they did explain all of the possible outcomes to us, Which, with us, we really didn't need to even talk about it because there was the option for a surgery that could save our son and that was the option for us.

So that was…I mean, we really didn't… We just kinda looked at each other and said, "Do the surgery." So then he had his first surgery, the Norwood, on Tuesday, March 18th and he had been born at midnight March 12th. So that's six days later, five days later. So that definitely for us, at that point in time, was the hardest and longest day of our lives. His recovery from that surgery was amazing. They had called him a superhero. They said no one had really healed in that much time and he was able to go home two weeks later on March 28th which was technically like a week-and-a-half after having major open heart surgery. Which was just crazy. I know I remember after his first surgery going in there and he didn't even look like a human. He looked like he was a…like a plastic doll. He was…all the diuretics and medications and machines he was hooked up to.

And like they try to warn you and they actually even show you pictures of other children to prepare you. But there's nothing that's really gonna prepare you when you go in and see your five, six-day-old newborn recovering from open heart surgery and hooked up to all the machines. And it definitely was not something that you can prepare for. He did amazing. Everything that…every milestone, they were like, "Okay, we wanna be able to cut down this medicine by this time." And he was able to do it. And, "We wanna do this by this day," and he was able to do it. One of the things that kept me sane going through the first days of everything and the surgery and so we're talking two-and-a-half, three weeks, was one of the nurses was like, "Did you plan on breastfeeding?" And I had said… "Well, yes." And, of course, at that time I'm just worried about him living. I'm not even thinking about breastfeeding.

And she's like, "This will help you." So I was like, "Okay." So they had a lactation room and I was able to go pump like every two hours. And the amazing thing was is when he was able to actually start eating, they were able to take my frozen breast milk and try to do little syringes full at first and then I was able to actually nurse him which was amazing. And they had said that at least at UVA, in their case studies, I was the first one that had done that. So they were actually excited about that and to see what it was going to do. UVA is, from our house, on a good day, an hour. With traffic, it can take us hour 25 minute to hour and 45 minute to get there. So you can imagine with having our four other children who three of them were in regular school at the time, and our youngest had just been…she actually was still three when Gabriel was born. So quite difficult.

We are blessed to have family that lives nearby. We live in Culpepper. My parents and my sister and brother-in-law all live in Culpepper. And then a few years ago, thankfully, my grandparents moved to Culpepper. So we do have a lot of local family that was able to help out keeping the kids at their house. And they kinda rotate it. So my parents and my grandparents would switch off. That way they'd have some breaks. Then my sister helped a lot too, picking them up from school when, if they had events that they needed to do or whatnot, would take them. Our youngest daughter, at the beginning, she just stayed with my grandparents since she needed someone to watch her all day and my parents worked. So she stayed at my grandparents. We were able to get into the Ronald McDonald House. Actually, no. When we first went down, Ronald McDonald house was...

Patrick: They were renovating the Ronald McDonald House. And the facilities that they were using in that place was one of the college dormitories on campus. And Amanda's condition right after childbirth was one where she couldn't tackle stairs. And it was still snow on the ground, and icy concrete walkways with many, many stairs. So UVA hooked us up with a hotel to basically make sure that we were able to stay around.

Amanda: I [crosstalk] forgot that. We showed up…because we did get in, and we showed up at the Ronald McDonald House over on the campus and it was way up with a hill with like stairs upon stairs. And he just looked to me. He's like, "We can't stay here." So he managed to go in and talk to them and through like the heart fund they were able to get us a two-night stay at the hotel for free that we didn't have to pay for. And then after that, we were able to have a discounted rate to stay there. So for the whole time he was there, that's what we did.

Chuck: Patrick, you stayed there also during this time? You stayed at the hospital? That week-and-a-half, you were there, too?

Patrick: Yes, I did.

Chuck: Cool.

Patrick: I had taken off for the inducement and then when everything went sideways, I called work and basically said I don't know when I can come back but I'll keep you guys informed.

Chuck: I just sent Rita an article yesterday that talked about the importance of the Dad being in the NICU for the mom and for the child. So good for you. That's an awesome thing you did.

Patrick: Going back to the NICU, one of the things that I will always remember is that being transferred from Culpepper over to UVA and the (situation) of not being born at UVA. They had no idea what our son's name was. So until we got there, the name above his little incubator was "Reck Baby Amanda." I just remember laughing when I got there just looking at it and was like, "Why don't you have my son's name? What's going on?" But the NICU nurses are fantastic. When they found out what his name was, they made little signs and pictures for him and they decorated his little station there or his little…

Amanda: Pod.

Patrick: His little pod with little things that had his name and everything. One thing I have to say is that the NICU and PICU nurses at UVA are just absolutely fantastic. They made all the difference in the world. Now the doctors are very good at what they do. They come in and they're very good at reading whatever blood gas numbers and what needs to be done and barking out orders to say, "Well, let's try this, this and this." And the nurses there, they're the ones with the bedside manner that basically translate all that medical speak and break it down into terms that you can actually understand.

Amanda: I agree. I sure…I do. That's a sounding board too because there's been so many times… I mean, there is one time I remember breaking down and the nurse had gotten off of her shift and came in there and she said, "I just wanna stay with you and pray with you because I just feel like you need it." And she stayed in the room with me for an hour after her shift. So it takes a strong person to be a PICU and NICU nurse. It really does. And they are just phenomenal. They really are.

Kelly: So when you were discharged from there when he was a couple weeks old after all of this, did he have to come home on any support or monitoring? And what were you told were the next steps? And also, how hard was it to come home with four other children with not a healthy baby that could just be a healthy baby?

Amanda: He came home on lots and lots of medicines. He had to be monitored by a pulse ox, didn't have to keep it on all the time but pretty much. Like overnight, they wanted us to keep it on every night. It was all preprogrammed. So the alarm will go off and if the alarm went off, we had to call UVA, the cardiology team immediately. We had to weigh him twice a day because they had, with his heart condition, that it's harder for them to gain weight because their heart is working so hard just to keep them alive by beating. So just breathing takes a lot out of their heart. So eating is extremely difficult. So we're obsessive or they made you be obsessive about weighing your child and they sent you home with a scale as well.

And then he had two or three visits throughout the week. So even though we were home, we weren't home. We were still traveling back to UVA several times a week so they could check him and they would do an EKG, an echo, and blood test every time we went there. It was very great to be home. Like, "Oh, I have my own bed to sleep in." But it was also very nerve-wracking to go, "Okay, where are we gonna put all this medicines so the other kids don't get to them? Where are we gonna put the pulse ox machine and where is this gonna go when… How was my day gonna go?" because Patrick at that point had to go back to work because he makes commission.

He does good…he works for Nestle so he did have 13 years with the company. So he does have luckily some built up vacation time and we were able to find out he had FMLA and applied for that so… And he actually still has FMLA. So at any point, if Gabe has…like his heart cath that he had a couple of months ago, he was able to just use the FMLA which is phenomenal that his company offers that. So it was much needed relief to be home but definitely still stressful. (It) probably took a week or so to really get into a routine. But Gabriel was. I mean, he was phenomenal. He did great. He was normal I guess, as normal as can be when it came to like feedings and stuff like that. But, of course, there were times you had to wake him up because his medicine schedule was crazy. You had to give him medicine at 3 o'clock in the morning. You kinda realize, "Oh that was much better in the hospital because the nurses did it."

Very exhausted the first couple of weeks and then we definitely got into like a routine of what Patrick would do at certain times or what I would do. And we were very thankful. And, actually, you had her on a podcast I think just last week, or a couple of weeks ago, but Alyssa Riedel, she was our lifesaver. She definitely was our guardian angel because the hospital staff they have a social worker that works with you and says, "Okay, well, yes, you have insurance but insurance is not gonna cover everything. So you can apply for SSI and you can apply for this and that." And we were applying for everything she said and everything was coming back, "Sorry, you don't qualify. Too much income or you own your house or you own…you know, whatever." And everything was coming back denied. And I had got a, from his first surgery, we got the bill and it was literally, I believe, 32 pages long.

By the second page, it had already reached a million dollars. I folded it back up, put it in the envelope and I can say to this day I've never opened that back up. I have it. It's in with all his other papers but I've never looked through every single page because it was so overwhelming that you're just like, "Oh, my lord. All we wanted was our son to live and we're getting this..." I don't even know how much it was, but well over a million dollars if it was a million dollars on page two. But Alyssa had told us because she has several children that she adopted that had disabilities and she said, "Amanda, this is who you need to call and you need to apply for the EDCD waiver. Gabriel's heart condition automatically qualifies him."

I contacted the people she contacted or that she gave me the contact and within a few days, honestly, everything was approved. He was put onto the waiver which also comes with Medicaid and it also came with a PCA which is a personal care attendant. And we were able to pick who we wanted to be our personal care attendants. So my sister is actually one. My grandfather is one. Patrick's mom is one and then I do have…there's a couple people outside of the family as well. That way, if family's not available then we have some backup, one of them even being a nurse. So we do have quite a few PCAs on hand and what they do is they come and they can help out any way that we need it. So if it's, "Hey, can you watch Gabriel?" especially in the beginning, so I can try to sleep as I was still healing just from giving birth. But it definitely was a godsend that Alyssa…I mean, she actually was like sending me messages and calling and left a voicemail. She was like, "You have to call me right now."

And to which I was like, "Okay, something is…why is Alyssa like harassing me?" So I did make time to call her and I'm so thankful that I did and that she reached out to us in that way because had we not had that, I don't know what we would have done because the last thing you want to worry about is how are you going to pay for the medications and how are you going to make sure your son (has) everything that he needs? And with that waiver, that was able to accomplish any lacks in between our primary insurance. Anything that they didn't take up, we had this extra cushion that helped out. So that was wonderful. At two-and-a-half months, Gabriel had to go in for a heart cath. So they wanted to go in and check his levels and make sure there wasn't anything they needed to do prior to him having his second open heart surgery. Because they were looking of doing that in like July is what they were thinking.

So they did the heart cath. Everything actually came back that it looked good. They were gonna set him up for surgery. And then he got a really, really, really high fever, was just acting really weird. People ran in then they did like tests. Like I just remember sitting in the hall that night going, "What in the world is going on?" I really thought like, honestly, I just thought that he was gonna pass away and was just shaking in the hallway. After doing tests, it turned out he had developed staph infection. Staph infection unfortunately happens. It's prevalent in all hospitals. You just don't want your medically very fragile son who does not have a whole heart to get this.

So that pushed back his surgery. They had to put in a…was it a Central or a PICC line? And he was in the hospital for a little while. They showed us how to do everything and then we were sent home. At that point, they did assign a nurse who had to come every day and take some samples and... But what was funny is we came home on…and it was Memorial weekend. So we came home on a Friday or a Saturday, they discharged us. And I was holding and nursing him and I noticed like his little arm kept shaking. So I had called up to cardiology and I was like, "Hey, is this a side effect of the strong antibiotics he's on? His arm keep twitching." And they were like, "Well, a lot of newborns can have like muscle spasms, not anything to worry about. You can call your normal pediatrician."

So I called them and they just said, "Just keep a eye on it that newborns can have normal twitching." It didn't seem right to me. And the next day he did it more. Monday morning, Memorial Day, which that…it actually happened to be May 30th that year and our youngest daughter's birthday, she was turning four, I told my husband. He was at work and I said, "I'm going to UVA." I said, "I think he might be having seizures." None of our other babies did this twitching stuff. And I had to go. So I packed up and went to UVA. I called them on the way and Dr. L’Ecuyer was like, "Absolutely. I'll see you in clinic and we’ll squeeze you in, because you're his mom. If you're really concerned then we'll take a look at him."

And I was holding him. I got him out of his car seat. I was holding him, waiting in the room. Dr. L’Ecuyer and a few other doctors came in with him or nurses, I'm not too sure. And as he came in the door, Gabriel started having convulsive seizures. He grabbed Gabriel from my arms. One of the other doctors yelled and they actually just ran with Gabriel up to the PICU. Gabriel was gone like it was a marathon. Dr. L’Ecuyer ended up…he was with me and said, "Just come with me. Follow me." And he said. "I'm so glad that you came in when you did." Turned out the staph infection from what the neurologist and other people told us after several days, they actually had to hook him up to the EEG machine for a couple of days to monitor his seizure activity. He did have staph infection bacteria around his heart that ended up breaking off.

So he had several strokes but the bacteria broke off and a lot of little pieces then went up to his brain which was causing the seizures. But it also caused massive brain damage. We're fortunate that his brain damage is not localized. It's not just in one spot. He actually has pinpoints of brain damage throughout his brain. So the one thing about that is we won't know what it will affect or what it won't affect until Gabriel just can't do it. So far, he's showing everybody that he's pretty darn cool because he's definitely doing a lot of things that a normal three-year-old would do. I mean, he's still definitely behind. He goes to speech therapy and therapies and whatnot but he's definitely catching up and meeting a lot of milestones so that's a huge blessing.

Kelly: So you discovered the seizures and everything prior to him having the next surgery, his Glenn, correct?

Amanda: Yes.

Kelly: So does having a child who has seizures or a brain condition on top of needing open heart surgery, how does that affect when they go in for so long under anesthesia? Is there anything special or extra they have to do or anything that?

Amanda: Yeah, he was put on the anti-seizure medication that he just had to stay on. And the neurologist…he actually stayed on it for almost…for two years, three years. He just got off of it this year actually, in January. So almost a full three years that he stayed on the medicine. But he had, just like with any newborn pediatric, you know, patient that is a heart patient, you have a special team of anesthesiologists that work with them when they do have to go under because they're just trained and there's other situations that can happen.

Chuck: Has he had a heart transplant at this point?

Amanda: Yes. So he had his second open heart surgery, the Glenn, August 1st of 2014. And then after his second open heart surgery, he never made any advances. Meaning, he stayed like the same size. He was not gaining any weight at all. He was not making any type of progress physically, like he's not trying to sit up or roll or just nothing. He just kinda was honestly just kinda there. On January 20th of 2015, he was admitted for them to try to put in NG tube just to try to help him with all his weight issues. What was supposed to be a two-day stay turned into over two weeks because he ended up getting refeeding syndrome. It was just a nightmare trying to work out how to get him the right food via the NG tube.

When he was discharged, he was home for exactly one week and he was rushed to the ER on February 9th of 2015. On February 12th, they went ahead and did a heart cath because, honestly, on February 9th I had a conversation with the doctor and the whole team when they rounded. And he was like, "What do we think is going on or whatever?" And I said, "I think it's clear he's telling us that his heart has failed and I really think that he needs a heart transplant." And Dr. L’Ecuyer was like…wanted to say, "Yes, I agree with you." But instead he's like, "Well, there's a process to lead up to that and what we need to do next is do the heart cath."  So that's what he went in on the 12th where he proved without a doubt that he needed a new heart. He actually coded.

They had to use shockers on him to bring him back. We were told it took 15 minutes. I mean, it was a long time to bring him back. That day they did all the paperwork to have him officially listed for transplant. And he was officially listed on February 18th. On February 20th he took a really bad turn for the worse. He had to be intubated and just closely monitored. He had like a team of people that had to monitor him in the PICU. He always had one person that was in the room with him. They could not leave. On March 3rd, because he had been again intubated since the 20th, and they did not see…he was not gonna get better. So to help him, they wanted to do surgery which was very risky at that point but the risk outweighed the…or the benefit outweighed the risk. So he went in and had a tracheotomy and a G-tube put in and also a new PICC line.

And he actually did really well. When they brought him out he actually had looked the best he had looked. They didn't have to have him as drugged as much, meaning he pretty much had been asleep since February 20th, almost like in a coma state. After having the trach and everything in, he was able to kinda be awake. So he actually had his eyes opened and… So that was wonderful for me as a mom to be able to kinda see him as a normal baby sort of. We had got a couple…two actually hearts actually had come up. He had come up on the list but they were…one was way too far away so they couldn't accept it. Another one was just they didn't think a perfect match for him. Later the same day, as his surgery is on March 3rd, his cardiologist comes in and tells him, "I really wish we hadn't done the surgery today."

And I looked at him and I'm looking at Gabriel because I'm in the same room and my heart is sinking. And then Dr. L’Ecuyer realized what he had said and goes, "No, no, no. Everything's great. We have a heart." So then I'm like, "Oh, gosh." And I can breathe then. So they had accepted a heart for him. They took him probably down early, late, late March 3rd. But March 4th is when they actually…the heart came and he had his transplant. We've added everything up. Gabriel spent a total of a little over 18 months and he just turned 3 this March but… So 18 months of his life in the hospital. As you can imagine, 18 months, I mean, that's a long time. There were times, especially through the heart transplant, we're able to get into the Ronald McDonald House. My three-year-old, or at that time four-year-old, she actually stayed with us. That helped me a lot and my husband like had to go to work.

He did take off for the transplant and he was off. Were you off a whole month? Four weeks. Yeah. He took off four weeks unpaid through FMLA which was extremely difficult for us with having four children and bills to pay and… But I'm so thankful he did it because I needed him there as much as he needed to be there as well. When he went back home to finally have to go back to work, I would make myself go to Ronald McDonald House every night even though I stayed until like Gabriel's last set of medications were given. And I made sure he was asleep. And then, I mean, it might be 11 o'clock or midnight and then I would go back and shower and try to get two, three hours of sleep before coming right back to the hospital because I just did not like to leave him.

It puts a strain on just everything in your life, on your marriage, on your family because it was hard. I was missing out on my other children's lives. They would have their award ceremonies at school and be in the play or a talent show and I wasn't able to go to it because if I was there then I wasn't with Gabriel and that was definitely extremely hard. Just 2016, Patrick and I did actually go to marriage counseling just… And it was absolutely phenomenal for us because you don't realize how each of you are feeling. Like you talk about certain stuff but there's a lot that you don't talk about going through this type of experience. And the marriage counseling, that's what we went for, was to talk about just our journey the last couple of years with Gabriel.

And that definitely made a huge impact and helped us to be able…just understand each other and what we were going through this whole journey with Gabriel. Gabriel is doing really, really well right now. The main issue right now is trying to get his one anti-rejection medicine where it needs to be. So we've been going weekly and he's having to get blood checked or his lab drawn and trying to adjust that medication, which he does not like to do at all. And he is just not like talking some. So he'll sit there and tell the nurse - he actually says - "All done? All done?" because he does not want them to do it.

Kelly: What is life like with transplant? Because I know a lot of people think that once you get a transplant, that's the answer to everything and you have no medical issues and you never need another transplant again. So what does…if you could kind of clear that up for people especially having a transplant so young with a child. Can you kind of touch on that a little bit?

Patrick: I find myself repeating the same thing over and over when I have to tell Gabriel's story. The first response, "Oh, heart transplant. So he's all better." No. Yes and no. He is performing the duties of a normal kid his age. Yes. That's fantastic. But he's not all better. Having explained the situation with the anti-rejection medication and that it's an immune suppressant which means that his immune system is always compromised. And we can't keep him like the boy in a plastic bubble but he has to go out and experience certain things. And every time he touches something, it's like my spider sense is tingling. I'm just, "Okay, where's the hand sanitizer?"

We should own stock in hand sanitizer, just vats of hand sanitizers in and around the house, in the vehicles, those little keychain thingies that dangle off the purse and just… There's hand sanitizer everywhere. And the biggest thing is probably having to explain to the family. It took a couple of times to pound it through their skull. But, yes, he's made it out of the woods for the most part but most heart transplant recipients will need another transplant down the road. But medicine and science, they get together and they have breakthroughs about every 10 to 15 years. And who knows what the next one's gonna yield? But for right now, it's okay talking to the everyday person on the street. It's worse talking to people in the insurance industry and the fact that they don't understand. And trying to educate them, it can be exasperating.

Amanda: Oh, yeah. Absolutely. I mean, last 2016, Gabriel was in the hospital from January through May. He had contracted Norovirus and Campylobacter virus. He lost half of his body weight. It was horrendous. He looked like someone from a concentration camp and was just withering away. The first we…actually, he went to the hospital two times and they would discharge us. Like they ended up putting NG tube in him just thinking it was a bad GI bug, not knowing. And it took my pediatrician calling in and said, "Look, you guys keep checking. Any time he goes in, [crosstalk] he's assigned to cardiology because he's a heart transplant patient.  However, not every time you go to the hospital it's a heart issue. So our pediatrician is phenomenal. I consider him like a grandpa because he's in his late 70s. He's just phenomenal.

And he called up there and talked to the cardiology team. He said, "Look, I'm sending him back up there. I don't know why you send him home because he's getting worse. He's not better. You have not fixed the problem and you need to get the GI team, general peds, you need to have other teams come in and look at him." And so we went back up that day the third time of being up there and it was literally we would go up there for a week and we would be home for like a day or two and go right back up. It was crazy. And the GI team came in, the one doctor. He actually looked at Gabe, shut the door, came over to me, gave me a hug and said, "I'm so sorry." He should have never been sent home. They should have contacted us before and, "I know he had some type of virus that I will let you know by the end of today what it is."

Lord, if he did not keep his word, because he came in not even a couple of hours later and he said, "He's got Norovirus. This is how we're gonna treat it." And he had had it so bad that he had to have special new PICC line put in and have special antibiotics run through it for, what was it? Like two days straight. It was just pure antibiotics running through him. And they were like some super, super strong antibiotics that you would give the President. Like it was like crazy.

Patrick: They had to tweak his anti-rejection meds so that his immune system could recover enough to help combat the Norovirus also.

Amanda: Yes. This was something that was a battle between the two teams, the transplant team and the GI team, because he had reached the year post-transplant and his one medication, his Cellcept, they said, "Look, the GI team wanted him to stop it completely."

Chuck: Closing remark. What advice would you give other families that are going through this?

Patrick: Talk to your husband and wife about everything, things that you're upset about, things that you're happy about. Just that's probably the biggest thing I've picked up from the counseling is that I clammed up. I didn't talk. And it created problems and it’s not enough to talk but you also have to listen and acknowledge it. But also, it looks really rocky, bumpy when you're in the PICU and you've got all these tubes and stuff just coming out of your baby. But trust in the nurses and doctors but also trust your gut. There's a lot of times mothers' intuition, you're picking up signals that they're not.

Amanda: Just a crazy journey. I mean, obviously, if I could go back and make my son perfectly healthy with no issues, absolutely I would. But he has changed me so much. I've always been a person that had helped others but now I have just so much more compassion. I have so much more patience. That's something I had prayed about for a long time with my four other kids. They'll do something, you're like, "Oh, my gosh." Now it's like, "Hey, guys. Hey, I love you. Go ahead and be crazy and do what you need to do because you're here and you're healthy and you're alive." And you really learn to take everything just so differently. He just really changed us and he is a blessing to our family. His sisters adore him.

Chuck: Well, thank you both for being on. I wish we had another hour to talk. I really do. This has been great. So I'm glad Gabriel is doing so well and I'm glad the family's doing so well.

Amanda: Thank you.

Chuck: Keep up all your great work.

 

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