Spilling the Beans on Pediatric Transplant Life

Month: May 2021

COVID isn’t over

When COVID-19 got serious a year ago, we were concerned at first, but felt that it would quickly blow over. E had coronavirus as a baby in the NICU , so we knew that it was a fairly common respiratory virus, even if it was one of the more serious ones. (E ended up on a ventilator for several days after contracting coronavirus then. Very scary.) We thought COVID-19 would just have to run its course over the winter months; we would treat it with the same precautions as we do the flu. We soon realized that we were so wrong. Thinking and worrying about COVID quickly consumed my life.

If you don’t know me personally, let me give some context and explain that my experience of motherhood has always been as the mother of a chronically ill child – we found out that E had kidney disease when I was just 20 weeks pregnant with her. Likewise, I became a Transplant Mom pretty early on in my motherhood journey – E was just 16-months-old when she was transplanted. I was a bit of a germ-o-phobe before having kids, but I became hyper aware of germs and viruses after E’s transplant. Every time someone coughed behind us at church, I would cringe and hope that person was not sitting directly behind us. We regularly screened our family and friends who visited us for symptoms of sickness. We carried hand sanitizer with us every where. We regularly used disinfecting wipes and Lysol spray in our home and only bought antibacterial soap to use in our kitchen, bathroom, and laundry room. This was the normal state of affairs at our house before COVID.

When COVID got bad and things shut down out in the real world, our normal home life didn’t change much. E was used to wearing masks thanks to getting her port accessed regularly for labs (sterile procedures like accessing ports require masks). She was used to not going out much during flu season and we had all the cleaning supplies recommended by the CDC, as you can see above. What changed were our social interactions. We didn’t see family or friends indoors except for my in-laws, who are retired and watch the girls regularly for us, and we only took E out to go to her medical and speech therapy appointments. We stopped going to church in person and started watching services online. My husband went to work, the grocery store, and our local home improvement store. We bought everything else online and did curbside pick-up. It bothered E and M both to be unable to go out on errands, to the library, to church, and on play dates, but their day-to-day home life continued pretty much uninterrupted. Fortunately, they weren’t privy to the internal life of my mind.

Ok, so what is the big deal if our home life didn’t change much and we already had the recommended cleaning supplies during the pandemic? The worry. The worry that we would somehow bring the virus home to E, she would get it bad, and have to be on a vent again. If you’ve never seen a loved one on a ventilator, I hope you never have to. It’s so scary. When E had coronavirus as a baby, it was one of three times when her doctor actually called me to come to her hospital room early in the day because her team was afraid for her. So those scary memories coupled with hyper vigilance about E’s compromised immune system intensified the worry every time I heard that COVID cases were getting worse.

Throughout the pandemic we have always been hopeful that E has antibodies to COVID from her bout with coronavirus as a baby and that those antibodies will protect her. One of E’s nephrologists told me in the summer of 2020 that our transplant team is hopeful that the steroids most of the transplant patients are on will also help with lung function and prevent COVID to some degree. These are good things. But a highly contagious and variable virus going around is not good news for an immunocompromised transplant patient. If E contracts COVID-19, she doesn’t just run the risk of experiencing the now-accepted symptoms and side effects – she could also face rejection and the need for another transplant. I’ll talk about this in depth in another post, but one of the biggest fears for transplant parents is the fear of rejection. So, if I’m worried about protecting E from contracting COVID and potential rejection, I’m going to do everything I can to keep her healthy and safe. And if I’m working to keep E healthy and safe, then my logic is that I’m also doing my part to keep the other people in my life healthy too.

In the fall of 2020, we chose to homeschool E to keep her healthy, as I’ve discussed in a previous post. We’ll continue to homeschool her for the upcoming school year as well since we don’t know when she’ll be able to receive the COVID vaccine. Last summer, we saw family and friends outside if they did not exhibit symptoms and hadn’t had any known contact with someone who was COVID-positive. My husband and I both received our COVID vaccines as soon as we could, and are now fully vaccinated. In light of that, we felt we needed to update our visiting policy for this summer. We will keep E home as much as possible and she’ll only do trips if she can be outside – e.g., to local state parks. Vaccinated adults may come visit us as long as they’re healthy, and play dates with kids outside may happen if the kids are 10-days out of daycare or school and are symptom-free. We are not allowing non-vaccinated adults to visit. We understand there are those out there with concerns about the vaccine, but we simply do not want to jeopardize E’s health.

I admit, I’ve had a hard time understanding the people who are against wearing masks during the pandemic, observing social distancing rules, or getting the vaccine. I’ve felt that regardless of if you have a fragile friend or family member in your life, why not just do your part so we can achieve herd immunity faster? To me, it seems simple: the faster we achieve herd immunity, the faster we go back to a semblance of normal, the better our hospitals can treat patients, and the better we protect those most vulnerable. My husband is quicker to understand those hesitant or resistant to wearing masks, social distancing, and getting vaccinated. He has pointed out on many occasions that COVID is like the flu – it’s a virus that mutates and can’t be completely eradicated. Getting a COVID shot in the future will probably be like getting your flu shot every year. Those who get the shot will be the ones most likely to be negatively affected by the virus, and the shot may not prevent vaccinated people from getting infected anyway. Most of those who get vaccinated probably do it with the hope that they don’t get as sick or to protect people they love. Healthy people with no pre-existing medical conditions or vulnerable people in their lives may not see the small risks of side effects of the vaccine as worth it because their bodies are most likely able to fight off an infection just fine. My husband also pointed out that my altruism is colored by being a Transplant Mom. He might be right to some degree, but I’d like to think I would still do my part to protect others even if E was not vulnerable.

So I’m trying my best to be patient with and understanding of those with different viewpoints on the vaccine. I try to remember that if you don’t have an immunocompromised loved one, you don’t fully comprehend the terror that accompanies the prospect of a communicable, potentially severe infection. It’s hard to be patient sometimes though. I often feel that if more people would’ve been considerate of the vulnerable part of the population, the pandemic wouldn’t have gotten quite so severe and we would be further along on the road back to normal than we are now. My husband and I are happy to be vaccinated and are grateful for all the people we know who have gotten the vaccine or are getting it. But COVID isn’t over for us. Just because my husband and I can go out and be relatively safe doesn’t mean the risk is over for our family. We know that until E can get her vaccination, the risk continues for us – hence our new visitation policy and ever-present vigilance against infection. In the end, I would ask that if you are one of those people who are hesitant about the vaccine, masking, or social distancing rules, try to remember families like ours and people like E. We want to be able to live normal lives again too. We can’t do that without help from people like you. So please help us by respecting our spaces and choices, and please do whatever small part you can to stop the spread so we can all get back to going out and seeing those we love.

E on September 20, 2015 – the day before she tested positive for coronavirus.
E on September 21, 2015 – fighting coronavirus. I don’t remember for sure how many days she spent on the vent at that time, but I think it was about 6 days. She spent the 3 weeks after that on oxygen.

Choosing Joy

A lot of what I’ve shared here as a Transplant Mom so far probably seems like complaints. Some days are so frustrating and feel so unfair that I just want to scream at the top of my lungs. There are times when I still ask why our family got sacked with a complicated disease that necessitated a transplant for E. (Thankfully, these times are now few and far between, but they still occur once in a while.) There are definitely days when I see or hear parents of perfectly healthy kids crying out with woe, asking for prayers as their toddler battles a normal ear infection or a cold, and I want to shake them. In my head I say, “You don’t know how good you have it! I would give anything for E to be a perfectly healthy kid. I would trade all the memories I have of holding her down during a picc line insertion while she screamed, watching her have seizures, or doing dialysis for your kid’s ear infection.” Instead, I ignore the parent or offer sympathy and say that it could always be worse. It may seem rough now, but their kid will get better soon.

One of the interesting things about parenting a chronically ill kid is the perspective that accompanies it. That’s what I really want to talk about here. Perspective is everything. Parents like us soon come to realize that we can’t complain about every little setback because there are scenarios out there that can be much worse for our kids. We learn that we can’t measure our kids’ success by healthy kids’ achievements, and we can’t always measure growth by prescribed milestones at the pediatrician’s office. A very different definition of the word “normal” applies to each family of a medically fragile kid too. I used to try to imagine what our lives would be like if E had been born healthy, but now I realize that’s a fruitless exercise. Meds, doctor’s appointments, labs, medical jargon and the like are part of our lives now and always will be. It’s weird how quickly someone can settle into a life like this, but we do and we go with it. Many times, the concerns parents of healthy children have about their children baffle me because I’m so used to dealing with potentially life-threatening situations. That’s my life, that’s my normal.

So, things could always be worse. That’s a key attitude of perspective I’ve gained since becoming a mom. After I freak out a little over a new hiccup or vent my frustration to my husband (or my mother-in-law) about some insurance problems, I remind myself that we actually have it pretty good. It is very frustrating to deal with everything we go through or have gone through, but we are also very blessed. E spent just one day shy of a year on peritoneal dialysis – not several years. We didn’t have to wait months and months on the transplant list for an organ to become available for E. She was able to get a transplant from a living, related donor and her surgery went exactly as planned. Except for gut bugs and anemia, she’s stayed pretty healthy since transplant, and the secondary conditions caused by her kidney disease have drastically improved (e.g, heart disease). After speech therapy and a lot of help from dietitians, E now speaks and eats as well as healthy kids. If you didn’t know she had a feeding tube, you would never be able to tell by looking at her. And only trained eyes would notice the little tell-tale scar on E’s neck that indicates something else is going on with her (her upper port-a-cath scar). E has had a rough go of it, but things could have gone so much worse for her.

Watching E run around outside over the past few weeks was the catalyst for my recent reflections on perspective. This time of year five years ago, we brought E home from the NICU and were doing peritoneal dialysis at home. That time in our lives was so indescribably hard that my husband and I both recently admitted we block out the memories of it. Transplant and a “normal” life seemed unreachable then. Now, that journey to transplant is just part of E’s and our family’s story. For whatever reason, we had to go through all of that to get here. We thank God for modern medicine, a successful transplant, and allowing E the ability to eat, speak, and walk on her own. E may be immunocompromised, but she is healthy in all these other ways. We see the parents of other kiddos with conditions that prevent them from communicating, eating on their own, or moving independently, and we marvel at their strength. Those parents do exponentially more than we do and selflessly deal with their own versions of normal. They are the parents I admire most.

A last note about perspective: it took me a while to get to an attitude of gratitude and to remember that things could always be worse. I had to process and work through a lot of anger, frustration, and sadness, even amidst my joy at being E’s mom. Sometimes when you’re lost in the trees, it truly is hard to see the forest and you take things for granted. I say this because I’ve relied on perspective so much more in the last year since we lost our third daughter, V, in May 2020 to the same kidney disease E was born with, ARPKD. With E, I never really entertained the thought we might lose her because that just wasn’t a possibility in my mind. E had a lot of odds stacked against her, but she is a fighter and she always pulls through. Even so, all I could think about leading up to V’s birth were the complications and long hospital stays E endured and I was angry. I didn’t want our family to go through all of that pain again. After V was born and we saw how much more severe her disease was than E’s, it became crystal clear just how many things had to go right and did for E to make it. I realized how lucky we would have been if V’s disease had presented in ways similar to E’s. Isn’t that weird? To feel lucky for the disease complications that previously caused our family so much hardship? That’s perspective in action. I would gladly have been a Transplant Mom to two transplant kiddos. But it wasn’t meant to be. V is enjoying her heavenly home now. We miss her terribly, but we are grateful for the time we had with her. So, what I’m trying to say with this post is remember to have perspective. Be sad, angry, or frustrated as you need for a time. Then remember things could always be worse. Find the good amidst the bad. Our lives are super frustrating at times; I complain about things and need to vent. But every day we choose joy at being the parents of our three wonderful girls. And every night when I tuck E in, I choose joy at being a Transplant Mom.

My joy: my three beautiful girls.

Advice for Families About to Go Through Transplant

Now that we’ve gone over how non-transplant families can interact with a family going through the transplant process, I’d like to share some advice for families about to go through transplant. Our official transplant education at our daughter’s transplant center was top-notch, but it still didn’t cover everything. So here’s what I want prospective transplant families to know.

Before transplant:

Get your ducks in a row. Even if you’re waiting for the call that an organ is ready and you don’t know when surgery will be, get as much in order ahead of time as possible and rest when you can. You’re going to be incredibly busy and you probably know hospitals are not good places to get rest. Arrange childcare for other children, plan how you’ll let your boss know you’ll be off work, and do any FMLA/PTO paperwork in advance. Make a few meals you can throw in the freezer. You might even work out which family members or neighbors can check on your pets. Once you get the green light that transplant is a go, things will move fast. You’ll be so glad you’re prepared.

Don’t be shy about telling people they can’t come over (this goes for after surgery too). Let people visit who are truly helpful and supportive – those in your most trusted inner circle. You don’t need the stress of visitors who aren’t considerate of what your family is going through. Some of the best advice my husband and I got when we went to our birth education classes when we were expecting E was about visitors and it absolutely applies to this situation as well. Our instructor told the fathers to be the gatekeepers for visitors: if a visitor would stress a mom out after delivery, it is the partner’s job to protect the mom’s health and sanity by putting that visitor off until a later time. So, protect your family’s health and sanity by knowing your limits with visitors. All you need to say to someone is, “Now’s not a good time.” If the prospective visitor truly loves your family, they won’t be offended.

Have a designated channel of communication for updates about your kid. All of your family and friends are going to want to know how things are going. But one of the last things you need is your phone blowing up with hundreds of texts, missed calls, and voicemails that you feel you need to address. Decide ahead of time how you’ll communicate updates. Maybe one parent will send texts to another family member and that family member will get the word out via social media. Or establish group text threads for each parent’s respective extended families. Some hospitals allow parents to set up Caring Bridge websites and the like for families to post updates. If that’s something you want to do, decide which parent will write posts. Lastly, if you’re uncomfortable with family and friends sharing news about your kiddo’s progress in any fashion, say so. You have the right to control what information about your kid is shared and with whom that information is shared.

E playing with her Dad the night before she was admitted to the hospital for her transplant.

During transplant:

Don’t be afraid to ask questions and speak up for your kid. You are the expert on your child, even if you’re not an expert about transplant. If something doesn’t feel right, say so. If you have questions, ask them until you get answers you understand. If you don’t agree with a treatment plan, ask for alternative options. If a nurse, CNA, or therapist doesn’t have a bedside manner that you feel works for your child, ask to speak with the charge nurse. Be honest about your concerns and ask them for a different nurse or CNA the next day. Likewise, if you have a really great nurse, ask for that nurse to continue your care. My husband loves to joke about how my most protective Mama Bear instincts were brought out during E’s transplant by one Child Life Specialist. E was 16-months-old when she had her transplant and she wasn’t verbal at all. On top of this, we didn’t want her playing with a lot of communal hospital toys due to potential germ exposure, even if those toys are routinely and carefully cleaned. But we had one persistent Child Life Specialist who just wouldn’t leave us alone and wouldn’t take no for an answer when I firmly told her we didn’t need or want toys for E. We had everything we needed. Finally, I told our nurse we absolutely did not want any Child Life Specialists in E’s room bothering us. We also only allowed the minimum physical therapy for E since she wasn’t walking yet and felt the physical therapist didn’t understand where E was in her development. I do not feel one bit bad about speaking up for E in these situations. That’s what she needed from me. (And by the way, contrary to what my husband says, I don’t hate all Child Life Specialists. We actually know and like two really great ones at E’s Infusion Center.)

Be prepared for unforeseen complications. Complications could occur both before you leave the hospital and once you get home. No one knows exactly how a patient’s body will react to a transplant. In our case, E’s surgery went swimmingly, but her surgeon told us beforehand to prepare for the possibility that she wouldn’t be able to close E all the way. Thankfully, E’s new kidney worked right away, the surgeon was able to close E, and E’s incision remained infection-free. But once E was stable enough to move from the PICU to the general pediatric floor, we had trouble restarting her feeds and she vomited uncontrollably. It took several days to find the right balance of fluid and calories before the vomiting stopped, and E’s doctors told us the only reason they were keeping her in the hospital was to make sure she was getting the fluid and nutrition she needed. Once E was finally discharged after transplant, she ended up back in the hospital for an overnight stay two weeks later thanks to a concerning lab result. Thankfully again, the concerning result turned out to be lab error, but it was still an unforeseen complication.

Never stop praying. My husband and I have active faith lives and believe you are never truly alone if you pray. But sometimes it is hard to keep going in trying times, so let other people pray for and with you. Our parish priest came to the hospital to pray with us while E and her aunt were in surgery. That was such a comforting thing for us. We also found strength and support from lay ministers at the hospital. One man came to visit us who had also had a daughter in the PICU as a toddler and another lady happened to be a member of our parish community. You never know where support may show itself. If you’re not religious, that’s ok. It might still help you to talk to a hospital chaplain though. We’ve met quite a few hospital chaplains of various faiths and have found them all to be down-to-earth and wonderful listeners. They are often also trained counselors. So even if you’re not religious, a chaplain may offer you a sympathetic and supportive ear.

E three days post-transplant, still in the PICU. She’d just gotten her oxygen off and had her first bath.

After transplant:

Post-transplant IS very different from the pre-transplant world. Many people will offer you advice on how to manage all the different appointments, medications, labs, and the like after transplant. But do what makes the most sense for your family. If you already have a system for appointments in place, awesome. Go with it. If you need ideas for new ways to manage meds, try one suggestion and if it doesn’t work, modify it to fit your kiddo and family. We have a nurse friend who gave us ideas on how to manage E’s transplant meds based on her experience with her husband’s transplant meds. We ended up modifying her advice to fit our family. For example, we separated medicines into different plastic snack bags and labeled them with the time they were to be given each day. Our friend’s husband separated his medicines by using colored snack bags. Still other people use pill boxes. Find what works best for your family and be open to changing your routine to fit your family’s needs over time. Meds, labs, and appointments will consume much of your lives for the first several months or so after your child’s transplant. After that, everything will taper down to much more manageable amounts – e.g., twice daily meds, labs once a month, appointments once a month, etc.

Divvy up responsibilities between parents. Both should know how to do everything, but neither should be responsible for doing everything. For example, when E came home from the hospital, my husband would make all her meds and formula, and I would give all the meds and deal with her feeding pump (filling bags, changing them out, and setting her pump). I interacted with E’s home health nurse during visits and took E to all her appointments, but my husband and I both gave baths and monitored E’s incision. My husband pays all E’s hospital and insurance bills, while I order meds from the pharmacy, make all calls to insurance, and interact with our social worker. Now that E’s older and she’s off her feeding pump, I make and give meds most of the time. One of the best things we did after E came home from the NICU was to write out her detailed daily schedule with doses and times for each med. We then made a list of the names and contact information for all E’s doctors, nurse coordinator, pharmacies, therapists, and social workers with our emergency contact information. We keep two copies of these documents in our home at all times – one copy of each document hangs in our kitchen and one copy of each is kept in a binder we send with E whenever she spends the weekend with her grandparents. Keeping multiple copies of these documents ensures that my husband and I have easy references to information in case we forget something or in case one parent needs to cover for the other. It also gives us peace of mind in case something happens to us and someone needs to step in and care for our girls. I’m sure detailed documents like these would also be super helpful for transplant kiddos who go to school or daycare.

If you’re a single parent, ask your social worker what programs your family might qualify for that could provide you with some in-home help, even if that’s temporary help. For instance, maybe your family qualifies for home health and a home health aide. Maybe your family qualifies for rides to appointments. Maybe your family qualifies for respite services. You won’t know what resources are out there until you ask.

NEVER be afraid to ask for help from your social workers or transplant office when it comes to pharmacy and insurance bills! Or when you need help navigating the complicated world of Medicare if you have a kidney kiddo like we do. That’s what these people are there for and they are life savers.

Lastly, never be afraid to call your transplant nurse coordinator, your transplant office, or pediatrician’s office if your child exhibits symptoms that concern you. You’ll be given lists of signs and symptoms to watch for, but if you’re not sure, go ahead and call. You’d rather be safe than sorry, and I’m sure your transplant coordinator or pediatrician is used to getting calls like yours. Everyone wants your kiddo’s transplant to be successful. Any time I had a concern about E during the two years or so after transplant, I always called her nurse coordinator first to let her transplant team know what was going on and ask how I should proceed. Now I am confident enough recognizing certain symptoms in E that I know who to contact first when we have concerns about her.

In the end, know that transplant is hard – but you will get through it. You and your kiddo have already made it this far and that’s half the battle. You can do this.

Going home, 11 days after transplant. One of my favorite pictures of E.

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