Spilling the Beans on Pediatric Transplant Life

Tag: Pre-transplant

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.

How to Talk to a Transplant Family about Transplant

Recently, I was asked to be part of a support group for parents of kidney kiddos, so I’ve been reflecting a lot more on our family’s experiences – what we felt, what helped, what stressed us out, and what we wish could’ve gone a different way. Here is some advice I’d like to share with non-transplant families who might know a family about to go through the transplant process.

Don’t ask if the family is excited for transplant. That’s a weird and hard question to answer, and I would say it’s also an insensitive one to ask. I understand that you might be struggling to find something to say or that you might have completely good intentions, but just don’t ask this question. It’s not helpful in any way. Instead, ask the family (or future transplant kid) how they feel about transplant so they can say whatever they feel. When E’s transplant was imminent, my husband and I had quite a few well-meaning people ask us this question and we were always shocked by it. Yes, we were excited for the prospect at a more normal life a transplant would give E, but we knew the surgery is a complicated one that carries many risks for both the donor and recipient. In our case, we didn’t have just E to worry about – we worried about my husband’s sister too, who is E’s living donor. We also knew what other transplant families and medical professionals know but many outside the transplant community don’t – a transplant isn’t a cure for whatever disease or condition that caused the transplant to be necessary. A transplant is a treatment and carries its own side effects. Then there is the fear of making it successfully through the surgery only to have the patient’s body reject the transplanted organ in time. We transplant families live in fear of rejection, even if that fear is tucked away into a corner of our brains most of the time. So rather than being excited, our family felt a mixture of hope and fear leading up to transplant.

Another reason you shouldn’t ask a family if they are excited for a transplant to happen is that many patients don’t receive organs from a living donor. Many receive organs from a deceased donor. I can’t speak from personal experience on this front since E’s transplant came from her aunt, but we do have a dear friend who received two life-saving transplants from a deceased donor. He is so grateful for the second chance at life his transplants gave him, but he also had to work through grief for his donor, his donor’s family, and for the part of him that he lost. For the patients and families who receive transplants from deceased donors, I imagine it’s hard to be “excited” when they know how much another family hurts from losing a loved one.

Something else to avoid saying to a family soon to go through the transplant process is “I know how you feel” followed by whatever situation you’d lived through that you think must be comparable. Again, I’m sure you have good intentions and just wish to express your sympathy. BUT, unless your family has lived through the transplant process, you do not know what the transplant family is going through or how they feel. Even if you’ve lived through a serious medical condition, you can’t know what the transplant process is like unless you’ve lived it yourself. What I’ve found to be helpful is when someone has said a version of this to me: “I can’t imagine what you must be going through.” Honestly, sometimes that’s all that needs to be said.

You might wonder what you can do to help a family before, during, and after an organ transplant. That’s great! Please listen when I say the best way to offer help is NOT to ask the family, “How can I help you?” or “Can you tell me what you need?” A family going through transplant already has more than enough on their minds to worry about, and you asking them to identify specific needs so you can help them just amplifies the stress in most cases. And speaking from experience, sometimes a family doesn’t know what will help them the most until the transplant happens. The best advice I can give for anyone wanting to help a transplant family is this: offer them food or to run errands for them. Some of the most helpful support we got during E’s transplant was from friends and family who just made food and dropped it off at our house or who sent us gift cards to order carry out. Still others sent or dropped off snacks we could grab when we came home or throw in our bags when we went back to the hospital. During several of our family’s hospital stays, some of my very best friends have offered to go to the grocery store for us, do our laundry, or even mow our lawn. They wanted to do whatever tasks they could take on that would allow us to spend more time at the hospital.

If the COVID prevention measures ever go away, I would also recommend offering to visit a transplant family when they’re ready. I am in no way advocating for interruption of a patient’s or family’s recuperation time. Please be mindful that recuperation is stressful and scary and the infection risk is real. But sometimes the caregivers of a transplant recipient need a respite from the constant vigil kept at the patient’s bedside. During various hospital stays, I’ve had friends come to the hospital to take me to lunch for an hour while E’s nurse stayed with her. We had family members stay with E for a hour or so at a time during her transplant recovery so we could go home to shower, get something to eat, or take a nap. And lastly, we had friends and family just come keep us company for a little while to help us take our minds off our worry. But remember to ask before you plan to visit and don’t be offended if the answer you get is “I’m sorry, but this isn’t a good time.” The transplant family knows you want to support them, and there will be other times when you can see them that might be safer or less stressful for them.

Now some advice for interacting with a transplant family after the transplant. Remember that the transplant family is figuring out their new normal. A transplant recipient has a lot of medications to take, follow-up appointments to go to, labs that need to be taken, and potentially even therapy to get through. It may be a while before anyone in their family is comfortable receiving visitors at their home or up to going out. Be respectful of their time commitments and choices to stay home, as each healing process is different. Please also understand that their attitude toward sickness prevention will change, as they need to protect the patient’s transplant. Please don’t be upset if the transplant family doesn’t attend a celebration or social event you host. They might not feel comfortable attending a crowded event. Or please don’t be offended if there are new rules established for visiting their house. We regularly enforce the rule of not visiting our house during flu season if you don’t get a flu shot. We are also not shy about asking if friends and family have gotten their shots. And I would hope that by now, our family and friends know that many times we aren’t in attendance at events not because we don’t want to be there, but because we are looking out for E’s health by not exposing her to other people’s germs.

Lastly, give the transplant patient and family some time to process and work through the myriad thoughts and feelings they might have after the transplant. If they want to talk and vent, let them do it. But if they want to talk about something completely different to take their minds off the overwhelming thing they’ve just gone through, by all means, help them in whatever way you can. Maybe this is bringing up a silly book or joke you read, showing them a goofy viral video, or even just discussing their favorite sports team’s recent performance. I promise that if you are truly considerate and keep the transplant family’s needs ahead of your desire to help them, you will help them when all’s said and done.

E right after she received her kidney transplant, November 2016. So many thoughts and feelings accompanied this photo then and still do now.

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