Transplant Mom

Spilling the Beans on Pediatric Transplant Life

A Taste of Her Life

March 5, 2024 /

Well folks, I’m back writing again after more than a two-year hiatus. I tried several times to make my comeback before this, but got sidetracked by various life happenings. What kept me away so long, you might ask? I had a baby in October 2021. 🙂 Our sweet rainbow baby, whom I will refer to as M2 here, decided to make his appearance in the world five weeks early. He was supposed to be a Thanksgiving baby – due on Black Friday in 2021, but we ended up having quite an unexpected journey with him. Thankfully, we found out at 20 weeks that he was perfectly healthy – no ARPKD like E or V. Instead, we found out that I had placenta previa. This is a medical condition where the placenta lies directly on top of the cervix. Most of the time, the placenta will move during the second or third trimesters. In some cases it doesn’t move and a c-section is scheduled about 37-38 weeks because the mother can’t deliver the baby through the placenta. If the mother should go into labor before the c-section, there is a risk of hemorrhaging and the mother will need an emergency c-section.

Unfortunately, I fell into the latter camp. I was going to be scheduled for a c-section in November, but I started bleeding in the early morning hours of a Sunday in September at 31 weeks. It was an awful feeling. We got our girls ready as quickly as we could and since our dedicated babysitters (Grandma and Grandpa) were out of town, we took them to a friend’s house and headed to the hospital. I ended up staying a week for observation, the first few days never knowing if a c-section was imminent. It was a nerve-wracking experience made worse by the fact that I had some sort of episode of labored breathing and chest pain that could only be described as a panic attack the day I was admitted. I had been without food for most of the day (NPO) due the possibility of needing the emergency c-section that first day, and by the end of it I was completely stressed out, terrified, and exhausted. Of course we were not strangers to hospital life – I had been hospitalized prenatally with E for five days – and we were no strangers to NICU life. But potentially having an emergency c-section and a smaller NICU baby than either E or V was hard to process. Honestly, it felt like a gut punch to me after everything we’d been through up to that point. Even though I didn’t think I was panicking, that’s what my body must have been doing. I was given an EKG, had the infectious disease team come look at me in case I had COVID, and then was taken for chest x-rays. When I came back from x-ray, I spent the rest of the night and the next day unable to move. I had IVs in both arms, EKG stickers on my chest, a sat probe on my finger, a blood pressure cuff on my upper arm, and a fetal monitor around my belly. And, I was completely restricted to my bed – no getting up whatsoever.

The bleeding stopped after the second day in the hospital and didn’t return, but my doctor kept me for observation, just in case. At the end of the week, she discharged me on bed rest with the instructions to come back right away if the bleeding resumed. So I went home on a Saturday afternoon, relaxed with my family, ate our favorite pepperoni pizza, had terrible heartburn, and just rested on Sunday. Then wouldn’t you know, the bleeding started again Monday morning and it was back to the hospital for me. This time, our girls were able to go to G&G’s and Transplant Dad was able to take vacation and FMLA so he could be at the hospital with me. I spent another week being observed, and then was discharged with bed rest orders again. This second hospital stay gave me the lovely experience of an iron infusion to boost my red blood cells that made me terribly sick and set me vomiting. After the second hospitalization, I made it two weeks at home sitting on our couch while Transplant Dad was “Do-It-All-Dad.” I was able to get our baby clothes in order, Transplant Dad bought some boy-specific items, and my doctor scheduled my c-section for October 29th – 36 weeks, which also happens to be mine and Transplant Dad’s dating anniversary. The girls hated having me in the hospital and I hated being away from them. M was also upset that her new brother was interfering with her October birthday month and she was adamant that she didn’t want to share her birthday – October 28th – with her brother.

M & E visiting me during my second stint in the hospital.

Lucky for M, M2 decided that he didn’t want to share her birthday anyway. Unluckily for us, he decided that the time to make his appearance in the world was October 23rd. When I woke up in the middle of the night bleeding heavily this time, we were a well-oiled machine and made it to the hospital 15 minutes later. I was taken to the room I’d vacated two weeks earlier and was greeted by one of the nurses who had previously taken care of me. G&G were on high alert, so hopped in the car and sped to the hospital to get our girls. By the time, Transplant Dad met me in my room, I was resting, several centimeters dilated, and waiting to see what would happen. I’d seen my OB the previous day and she told me that she would be off-service for the weekend, but would be back on Monday. In the event that something would happen over the weekend (premonition, maybe?) I had asked her which of her colleagues would be her first choice to perform my c-section. The doctor she immediately identified was the one who was on-service when I went in early Saturday morning. When he came to check on me later Saturday morning, he explained that his wife had had placenta previa too and he had to drive her to the hospital for an emergency c-section years before. If made me feel better to know I had a compassionate doctor who could empathize with what we were going through. He explained to us exactly which signs he was looking for to do the c-section and said he’d keep checking on me. About 12:15 or so, the bleeding intensified suddenly. The nurses called the doctor back and I was soon in the operating room being prepped for an emergency c-section. My first thoughts were for keeping my baby safe, but I was also terribly nervous. The only experience with surgery I’d had was the D&C procedure, so I had no idea how my body would react.

An hour and twenty minutes after the bleeding started, M2 was born. He weighed six pounds, ten ounces and had a full head of hair. We were a little surprised to see he was so big already considering he was only 35 weeks. He was healthy and didn’t need any oxygen, so he stayed in the OR with Transplant Dad for an hour while I was being worked on and closed up. Because the epidural was taking some time to take effect before the operation began, the anesthesiologist had the team lower the head of the operating table. Pretty soon after the operation started, I had terrible pain in my right shoulder. The anesthesiologist told me that nerves in my abdomen were reacting and sending signals to the nerves in my shoulder. (Later, the shoulder pain continued as air trapped in my body from the surgery that was seeking a way out.) I was also put on oxygen during the surgery. As a result of the intense shoulder pain and the uncomfortable sensation of air constantly blowing up my nose, I was not in any condition to enjoy having M2 and my husband in the OR next to me. All I could do at that point was glance over at M2 when he was weighed and hold my husband’s hand. I had to use the rest of my strength to breathe out of my mouth to try to keep my mind off my shoulder and what I was hearing from the other side of the drape.

M2 and I were separated after my c-section was complete. M2 went off to the NICU per hospital policy for babies born before 36 weeks since he was technically considered premature. I went back to my room in Labor and Delivery to recover before being taken to the post-partum floor. Soon after leaving the OR, my bleeding returned. My epidural also started wearing off, so I was in a lot of pain from both the surgery and from the nurses having to push on my abdomen to check on my uterus. My lab results were fine but the bleeding continued, and every time someone tried to touch my abdomen, I instinctively tried to keep their hands away. When the doctor who performed my c-section came to check on me, he told the nurses to take it easy on my abdomen and he ordered some medicine to help stop the bleeding. If the bleeding continued, I would need a blood transfusion or I would have to go back to surgery. After that, I was given some high-powered pain meds and the medicine to help with the bleeding. I remember my nurse giving me the pain medicine in my IV first and then distracting me while she injected the other medicine into my thigh. It was late evening before I was finally stable enough to go to the post-partum floor.

I have so much respect for moms who have c-section deliveries for all of their children. My c-section was by far my hardest delivery and recovery. After being on bed-rest for so long and then not eating much at all the day of M2’s birth, I was so weak and in so much pain that I didn’t get out of bed and to the NICU to hold M2 until the evening of the day after he was born. It took me longer to be able to stand, sit up, and walk than other c-section moms, and when I did, I needed both pain medicine and a stomach brace to help keep pressure on my incision. Thankfully, my doctor had closed my incision with staples and my regular doctor removed them before I was discharged. That made my recovery a little easier since I didn’t have to worry about stitches itching or pulling on my skin. M2 was born on a Saturday and I wasn’t discharged until the Wednesday after. Transplant Dad rearranged our bedroom at home and built a stool for me so I could more easily get in and out of bed. He also helped me walk up and down stairs and get dressed for the first few weeks I was home. It was a slow recovery and when all was said and done, it was almost seven weeks before I felt like I was finally myself again. M2 spent two weeks in the NICU learning to eat before we finally got to bring him home.

Holding my boy for the first time.

The day M2 was born was hands-down the most scared I have ever been for my own life, and seeing fear in my husband’s eyes was something I won’t forget. At first, I was terribly frustrated and angry that we had to go through another hard situation as a family, even if the outcome was positive – M2 was healthy and I recovered with time. After more time passed and I have been able to reflect, I have realized that my placenta previa and c-section taught me some lessons in humility and spousal compassion, and gave me a gift in the form of empathy. My experiences gave me the ability to relate to what my grandpa went through when he lost his mobility and had to depend on other people to help him do simple daily activities. Most of all though, through my experiences I was given a small taste of E’s life.

I can never truly know what it is like to be E – all the surgeries, procedures, hospital stays, medications, and recoveries – that have made her and shaped her into who she is. It’s hard to imagine all the feelings E must have had and still has. But the experiences I had made me live for a small time in a world very similar to hers. As a result, I now know what it’s like being hooked up to IVs in multiple limbs, not being able to move because of blood pressure cuffs, lines, and monitors. How it feels to breathe when you have to wear oxygen and it’s blowing up your nose. How it feels to wake up in excruciating pain after abdominal surgery. I now know what it’s like to have x-rays taken and how scary it is when something’s happening to you and you don’t know why. I was a healthy, rational adult and I was scared. So after being through some of what she’s lived through myself, I’ve been able to use my new insight to better help E. When she spent five days in the hospital last year and later when she underwent a new procedure, I was able to make her a little more comfortable and coach her through her anxiety a little better than I did previously. Most of the time I’m better at noticing when she’s afraid, and try to take extra time to answer questions she might have. I also try to ask her about her feelings now that she’s old enough to recognize them and put a name to them. Part of me wishes that my family and I wouldn’t have had to go through what we did with my placenta previa and c-section. But, as with most things, we learned so much from that time and I am now grateful for the brief glimpse I had into E’s life. The empathy I learned continues to help me not only with E, but also with other loved ones. I hope I can continue to use it well in the future.

Our rainbow baby – my hardest delivery by far, but so worth it.
Photo by Bethany of Photography by Bethany.

Advocate!

August 8, 2021 /

It’s been a busy month and a half at our house since my last post. Between summer get-togethers, the 4th of July, important family news, a week-long fishing trip for my husband, a major power outage, a birthday party, and then a pharmacy situation, it’s been a bit hectic. That doesn’t mean that I’ve been without food for thought for this blog though! So, let me talk about a couple of recent events in our family that illustrate my overall theme of advocating for your child.

One of my most recent posts discussed how COVID isn’t over for us just because the mask mandates are over. At the end of June, NPR published this story that emphasizes how much we should be protecting the immunosuppressed people in our society to help conquer COVID faster. Immunosuppressed people are less likely to develop an adequate immune response to the COVID vaccine due to the medications they’re on and so most likely need more than two doses to have some antibody protection from COVID. Research is also showing how immunosuppressed people can spread variants because it takes them so long to develop effective antibodies to the virus. So, the article argues that we should be doing everything we can to protect the immunosuppressed people around us. I shared this article on social media because I firmly believe that everyone should be getting the vaccine if they can. If one can’t get the vaccine for whatever reason, then that person should be doing everything they can to protect those around them by practicing social distancing and masking up. This is what I’ve been saying to those around me and this is what we’ve been doing for E. Yes, it stinks that E can’t go to the zoo, that she can’t go over to friends’ houses to play inside, that she can’t go to family parties if not everyone’s vaccinated. But my job as her parent is to protect her the best that I can, and sometimes, the best thing for me to do is to keep her home to keep her safe. Other times the best thing I can do for her is to speak up and educate those around me. How can I expect someone to respect my point-of-view if they don’t know my experience and they don’t know how their actions affect E?

When my husband was off on his fishing trip, I saw a friend post on social media about a medial ID bracelet she’d purchased for her daughter. She posted a picture of a pink and white silicone bracelet that looked like it would suit E very well. I’ve been wanting to get E a medical ID bracelet for over a year now. I felt that she’d be safer when we go out or if she’s not in our care if she had one. All the products I’d seen though were too bulky, too grown-up, too big, or too expensive, so we decided to wait a while to buy one, especially since we weren’t going out much thanks to the pandemic. When I saw my friend’s picture of her daughter’s bracelet, I knew I had to check out the Etsy shop she purchased it from. Turns out, I.C.O.E. Bracelets had just the type of bracelet we wanted and I ordered one for E. E had fun choosing the color she wanted and I was glad I got all the information I needed engraved on the bracelet. So now when E goes out, whether with us or anyone else, she’s going to wear the bracelet with this information on it:

Kidney Transplant
Anti Reject-Meds;
No NSAIDS
ICOE (in case of emergency):
[Mom’s phone number]
[Dad’s phone number]

How E’s bracelet looks on her.
The happy bracelet model. We’re trying to get in the habit of E wearing it every time we go out.

You’re probably wondering what a medical ID bracelet has to do with advocating for your child. Well, think of it this way: it’s a way for me to communicate to other adults enough about E to ensure she’s well taken care of in case she’s ever in an emergency situation and I’m not there. It’s a way for her to tell other people about herself too – whether she’s educating an adult in an emergency situation or exposing a peer to transplant kiddos for the first time. It can be both a life line and a conversation starter for her when she’s out and about. And the older she gets, the more she’ll be away from me, so it’s peace of mind for me that I’m giving her information she needs no matter where she goes.

The biggest, most stressful situation that happened lately that reflects my theme of advocating for your child came about thanks to CVS Specialty Pharmacy. On July 14th, I reordered one of E’s twice-daily anti-rejection medications. I specified delivery for Friday, July 16th and didn’t think twice about it…until the afternoon of July 16th arrived and I hadn’t gotten any shipping confirmation emails about E’s prescription. So I contacted CVS Specialty and asked for an update. The answer I got was that the med would be delayed indefinitely because a prior authorization was needed by our primary health insurance company. Until that prior auth was signed by E’s doctor and received by the insurance company, CVS Specialty would not fill E’s order. Then the message said that the prior authorization request had been sent to E’s doctor and that CVS couldn’t tell me how long the process would take. Our regular transplant nurse coordinator was out of the office that week, so I immediately fired an email away to one of the other nurse coordinators explaining the situation and asking her to please follow up on the prior auth right away. Then I calculated how many doses I had left of the anti-rejection med in question and called our transplant office in case the nurse coordinator I emailed was out of the office too. The nurse coordinator who called me back right away assured me that she would work on the prior auth with the doctor right away and that she would get everything lined up at the hospital pharmacy in case we needed emergency doses of the anti-rejection med. I then sent a firmly worded message back to CVS Specialty demanding to know why a prior authorization was needed since E’s prescription didn’t expire until January 2022 and we’d just had one sent in January 2021. I also demanded to know why I wasn’t notified that E’s prescription would be delayed, (especially when I have to specify how many doses of a med we have left when we place a refill order). The message I got back stated that our insurance company rejected the anti-rejection med because they determined it was “not medically necessary.” CVS could not tell me how long the process would take to resolve and they apologized for any “inconveniences” the delay caused me. I was incensed. E had enough doses of the med to get her through the morning of July 19th (a Monday), after which we’d be completely out. Thank goodness I’d spoken to the nurse coordinator right away and arranged for possible rescue doses. How could all the people at CVS Specialty who worked on E’s refill not realize that by not communicating to me about the delay they ensured we would run out of doses for her and that missing a dose means risk of rejection for her?!

I was so upset by this turn of events that I decided to call CVS Specialty on Saturday morning to follow up on the prior authorization request, as I knew from earlier this year that they worked on Saturday mornings. Well, turns out, CVS has recently changed its Specialty business hours, so only emergencies are handled on Saturdays now. Ironically, the first gal I spoke with to explain my emergency – that my daughter would run out of anti-rejection meds by Monday – told me that my emergency WASN’T an emergency. According to her, an emergency would be if E was already out of doses. Not a good omen to start another day. I demanded to talk to the on-call pharmacist. When I finally talked to the on-call pharmacist and explained the situation, she agreed that we had an emergency and put me through to the escalation team so that E could get meds right away and not miss a dose. The gal I then spoke to on the escalation team apologized and said CVS would “definitely” get the anti-rejection med to us by 9 p.m. CST on Monday, July 19th to ensure E wouldn’t miss a dose. She canceled an order set to arrive on the 20th, verified that there was no copay associated with the order, and informed me that a claim associated with the prior auth had been satisfied. She then told me that someone with CVS would call me either later Saturday or Monday morning to verify the shipment. After speaking to both the pharmacist and the escalation team member, I felt a little better – which was good considering that July 18th was E’s sixth birthday party and July 19th was her actual sixth birthday. I didn’t want to spend both days worrying about procuring meds for her.

We had a nice time at the party the next day on the 18th and it was a great day for E. For her birthday on the 19th, I told her she could decide all our meals and we would play whatever she wanted to play that day until her dad got home and she opened the rest of her presents. But by 9:30 a.m., that plan sort of went down the drain. That’s when CVS Specialty called to talk to me about getting E’s med to us “as soon as possible.” The gal I spoke with said she’d work on it and get back to me with an estimated time of delivery. I was annoyed after the call since I was expecting this call to just confirm delivery, as per my conversation with the escalation team member on Saturday. At 1:45 p.m., the same gal I’d spoken to at 9:30 – a member of the resolution team – called me back to tell me that the earliest she could get E’s med to us would be 1:15 a.m. Tuesday(!). When I told the gal that this “resolution” was unacceptable because it meant that E would miss a dose and that I would have to go to our hospital to procure rescue doses, the gal said she was “sorry for the inconvenience” it caused us. I then asked why there was a discrepancy between what the gal on the escalation team promised me for delivery by 9 p.m. Monday and the actual arrival time of 1:15 a.m. Tuesday, and the gal told me that she didn’t know what the escalation team member had promised me since they were on different teams and she could only offer what she could offer. I then asked to speak to her supervisor. She told me there was no one else I could speak to because she was a member of the resolution team. So then I asked if she could tell me why no one from CVS had contacted me to inform me of the prior auth request the previous week. She told me that they don’t normally do that because they communicate with the doctor’s office and it’s the doctor’s responsibility to turn in the information for the prior auth to insurance as soon as possible. Then she told me there was nothing I could’ve done to speed the process along if they would’ve contacted with me. I told her I begged to differ with her – if I would’ve known about the prior auth request I could’ve worked with my transplant coordinators to alert the doctors to the prior auth request sooner and could have potentially avoided running out of meds. The gal also told me that she started working on the request as soon as she got in to work. I find this hard to believe considering that CVS Specialty is based out of Pennsylvania and therefore on Eastern time, while I am in Central time, and based on the time I got the call, it was already 10:30 a.m. in Pennsylvania. If my emergency request with the escalation team from Saturday had been taken seriously on Monday, then the gal with the resolution team should’ve only had to arrange shipment right away when business hours started on Monday. So where was the breakdown between teams here? What good is an escalation team if they don’t actually speed things along? What good is a resolution team if the resolutions they devise don’t actually provide resolution to the problem? What good is a national patient portal if teams from different departments don’t communicate with each other and work together? I informed the gal that CVS Specialty is the worst specialty pharmacy out of the three I have worked with and I was extremely dissatisfied with the way our current situation was handled. The gal then asked if I needed to speak with a pharmacist. When I answered no, she told me that she would send me the tracking information for E’s shipment.

So rather than playing with E and making her favorite supper for her birthday, I made two different phone calls to the outpatient pharmacy at our transplant hospital after the second phone call with CVS and arranged to pick up emergency doses later in the day. When my husband got home, the prep work for supper was done and I informed him he’d have to throw everything together, and we had E open the rest of her birthday presents before I had to leave for the hospital. When I got to the hospital pharmacy, I had to wait just five minutes before picking up E’s rescue doses, which one of the pharmacists apologized(!) for not having ready sooner and which was not billed to insurance at all. The hospital pharmacy even gave me more than we needed – just in case. Yes, our hospital has a vested interest in making sure E gets the meds she needs since she is their patient, but what a difference in customer service between our hospital pharmacy and CVS Specialty! We were treated like people with an emergency situation at our hospital, whereas CVS Specialty treated us like we were random numbers. As I made my 15 minute drive home from the hospital, I wondered what we would’ve done if we lived in a rural area and were hours instead of minutes away from our hospital pharmacy. What would we do without our amazing nurse coordinator who ensured the rescue doses would be waiting for me?

After supper we played outside with the girls and enjoyed home made ice cream on the deck before bed time. Wouldn’t you know that the tracking number the resolution team member gave me for E’s shipment didn’t work? To prevent the doorbell from waking everyone up that night, I decided to sleep on the couch until the courier arrived with E’s med. Good thing I made that decision because the courier didn’t arrive until 2:45 a.m. and I didn’t get to bed until after 3. Naturally, I was tired the next morning and wasn’t at all up for any more nonsense. A representative from CVS called me a little after 8 to make sure the courier had delivered E’s med with no problems. When I shortly replied yes and told her at what time the med arrived, she asked if there was anything more she could do for me. I ended up having a half-hour long conversation with her about everything that had happened and I asked her what the procedure was at CVS that E’s med could have been delayed from one department to another. I also asked how a prior authorization could have been required for an existing med that had a current prescription. The representative was very apologetic, listened to my version of the story, and took notes to call the supervisors of the previous representatives with whom I’d spoken. She looked into E’s online patient portal while I was on the phone with her and saw that the med had been billed incorrectly – so no prior authorization had actually been needed! What happened was that the person/people who tried to bill the med to insurance didn’t do the billing in the specific way needed for this particular med and when they encountered a problem, they didn’t ask for help. You can imagine what I felt when I heard this. The representative repeatedly told me that I didn’t deserve to be treated the way I had been and that meds should not be this hard to order. She promised to find me a dedicated person to place orders with in the future who would know how to handle E’s anti-rejection meds and she promised to follow up with me the next day to update me on the progress she’d made to guarantee a medication delay never happens for us again. Well, that representative who actually demonstrated kindness to me for the first time ever from CVS Specialty ended up never calling back. Perhaps she wasn’t as genuine as I thought she was. Or perhaps her supervisor prevented her from doing more to help me. I don’t know. That doesn’t mean my fight is over though. As per the advice I received at the beginning of the year from another transplant mom, I’m going to file a formal complaint with our insurance company against CVS Specialty. Our insurance company needs to know that we weren’t well-served by CVS Specialty and because of CVS, E could’ve gone through a much more serious situation – one that could have forced our insurance company to pay hospital bills instead of covering a preventative/maintenance medication. I am also doing more research to see if there are other ways for us to get around using CVS Specialty as our pharmacy.

Besides raising my blood pressure, this latest episode with CVS Specialty demonstrates how important it is to be your child’s first and best advocate. Being an advocate is the biggest lesson I’ve learned since the day E was born. I can’t count the times I’ve spoken up for E and I can’t imagine what would’ve happened to her had I not done that. For example, we surely would’ve run out of meds due to pharmacy problems many times if I hadn’t been on top of the issues and asked to speak to supervisors, done my own research, and worked with E’s doctors and nurses. I have spoken up about delays in E’s transplant team communicating with us. My husband once called out a prescription error on a doctor’s part that could have been fatal for E if he hadn’t been paying close attention to her medications. We fought for specific goals and treatments for E when she was just a baby in the NICU. I just can’t emphasize enough how important it is to advocate for your child’s health.

Loving your child comes naturally, but speaking out for them doesn’t happen automatically for every parent. If speaking up doesn’t come naturally to you, remember that no one knows your child like you do and your gut instinct is usually right when it comes to your kid. This advice applies to parents of healthy kids and medically fragile ones. If you aren’t getting the answers you need from your child’s doctor, seek a second opinion. Ask questions until you receive the answers you need. If a treatment option isn’t right for your kid, say so and don’t rest until you find something that works. If you feel your kid needs speech/physical/occupational/emotional therapy but your school district or insurance won’t help, ask your doctor for help, reach out to other parents to see what avenues they know of, or ask to be pointed to a social worker. Don’t take no for an answer when it comes to your child’s health!

Know that your child sees what you do for them. By advocating for your child, you show your child they are worth fighting for. You show your child what it looks like to stand up for someone or something they believe in. You show your child how to advocate for their own health someday. Keep in mind that there are ways to be firm and advocate for your child without being rude. Also remember that sometimes the best thing you can do is admit you need help from someone else to get the answers you need. Your child sees these things too. There are times when a child has to learn that not everything can go their own way. But when it comes to health issues, no child should have to go it alone or without, and they should know it’s ok to ask for help. So be your child’s tireless, unwavering, strong advocate and teach them to stand up for themselves in the process.

So, you can see that I practice what I preach. In all these scenarios I’ve laid out, I advocate for E one way or another. I work to educate and inform others about ways they can help keep people like E healthy and safe. I take measures to provide for E even when I’m not with her. Lastly, I work to take care of E and empower her by always standing up for her health. Hopefully my actions and example will encourage other parents to do the same for their kids.

My parents got me this Lucy t-shirt from the Charles M. Schultz museum way before I became a mom, but it is the perfect illustration for this post. 🙂

This and That – Summer Update

June 17, 2021 /

Before I write about other topics I’ve alluded to in previous posts, I thought I’d provide a few updates on various happenings I’ve written about so far.

I’m happy to say that we found an open-mouth water bottle that seems to work for E. She had a small Minnie Mouse water bottle with an open mouth that I rediscovered after I wrote the post about drinking goals. I substituted it one day in place of her straw water bottles and she did very well with it. So, I decided to see if we could purchase another bottle like it for some variety. After looking around for a while, I decided on this Takeya one. It’s sturdy and easy enough for E to open, and I like that it’s a little smaller than her Bottled Joy bottles. I also really like the handle on it so she can carry it around. I ordered M some new water bottles too (she’d also bitten through all her straws), and in the process found the next one I’ll buy for E when one of hers needs replacing: it’s this Rubbermaid bottle. It seems like the best combination of both types of her current water bottles. And while my husband scratched his head a bit at new water bottles for both girls, I reminded him that these purchases will be well worth it. Drinking water all the time is E’s life, after all.

E loves to be outside during the summer and we don’t want her to miss out on key experiences of childhood. We keep her inside during the hottest parts of the day, but we also compensate for fluid lost through sweating by giving her extra fluid throughout the day. We aim for at least 100 mLs of extra fluid on top of her 1800 mL/day goal. When she’s running around and playing, drinking extra water is natural to her, just as it is to you and me. But when we need a fun summer treat, we make popsicles and smoothies. We usually make Koolaid popsicles in whichever color E and M decide they want. We have our own popsicle molds and I weigh the liquid in one section of the molds before we pop the full tray in the freezer. Last summer we started making smoothies at home in addition to the popsicles. M and I enjoy blueberry banana smoothies, but E LOVES cantaloupe smoothies! This summer melon smoothie recipe is our favorite, and she can’t wait until Grandpa has cantaloupes from his garden to share. I was not a big fan of fruit growing up (veggie lover here), so making smoothies at home is a big win for me on all fronts: I’m trying new fruit (mango was the new addition last week), my girls get healthy snacks, and E gets fluid for her fluid goal. We used our big blender last year to make all our smoothies, but in May my husband surprised me with an immersion blender. Ours is a Kitchen Aid 2-speed hand blender, and I love it! I can quickly wash the blending arm and set it out to dry and we can make smoothies again later in the day or right away the next day instead of waiting for all the pieces of our big blender to dry. The lid for the blender jar is very convenient as well. I’ve put the lid on and set leftover smoothie in the fridge for the next day and didn’t have to worry about dirtying any other glasses or cups. I know there are lots of different types of blenders out there for smoothie making, but I thought I’d share what is making my life a little easier. This week’s new smoothie ingredient is peaches, and next week’s is kiwi. As long as we stay away from grapefruit, we’ll be fine. As most of you transplant parents know, grapefruit doesn’t play nice with anti-rejection meds.

In March I wrote a post detailing our headaches with our insurance company denying coverage for two different injections E received in November. Well, I’m happy to report that 6 months later(!), we received word that those denials were officially overturned. As I mentioned, it took me, our nurse coordinator, and a financial coordinator to assemble records to submit to the insurance company to set matters straight and establish that the injections E received were medically necessary. Then one of E’s nephrologists had to get in contact with the insurance company’s doctor several times to explain why the injections were necessary. There’s got to be a better way for doctors to submit claims to insurance companies and for those doctors to submit evidence of medical necessity right away. The current system of denying coverage to the patient, informing the patient about the denial months later, and then asking the patient to assemble records and coordinate with doctors to submit evidence is such a long process. If doctors could submit reasons for treatments with their claims right away, then insurance companies would have all the information they need to take care of claims on their end and the process would go a lot smoother and more quickly, in my opinion.

E’s neutrophil counts have been up and down the last couple months, so we’re still riding things out to see if a medication change is needed. Unless her upcoming July labs are drastically low, I suspect we’ll discuss this topic in depth at E’s next routine check-up with her transplant team in August. To be honest, it makes me nervous watching those levels for a couple of reasons. The first obviously is that a low neutrophil count for E is dangerous, as I’ve already discussed. The second is that if a change in medication is necessary I hope we’ll be able to get that new med without complications from the pharmacy. I’m glad to say that I’ve only had one problem with CVS Specialty Pharmacy since January. This latest problem in May seems to be a problem with their automated system and customer service. I ordered one of E’s anti-rejection meds on a Saturday through her online patient portal and selected the day I wanted the medication delivered to our house, which was a Tuesday. We regularly get expedited two-day delivery. The system sent me a confirmation of the order that same day and I received a confirmation of shipment on Monday. On Tuesday I received a message stating that our delivery would be delayed until Wednesday. Then I received another message stating that the medication would be delayed indefinitely until I called the CVS customer care team. A delay in delivery is a problem because I have to make sure I am home to sign for the delivery and we were expected at appointments on that particular Wednesday. I called CVS to see what in the world was going on, and was told that my request was received too late in the morning on Saturday to get the medication to us by Tuesday. But I could create an account on the website of the commercial shipping company CVS uses, leave directions for the delivery driver if I wouldn’t be at home in time for delivery, and ask the driver stop at a different time. I was definitely annoyed at the cryptic messages from CVS and the explanation for the delay, but felt like I could deal with the solution just fine. But what I then learned from the shipping company’s website is that you cannot specify a change in directions for delivery if the package to be delivered is medication OR that package needs a signature. I can only give specific delivery directions to a driver if I’ve already missed one delivery. Frustrating. So, I ended up hurrying home from our Wednesday appointments and received E’s med when it arrived. I also told the CVS customer care rep how unhelpful the email messages about the delay were. I’m continuing to speak up about any problems we encounter with CVS.

In my post about pharmacies, I wrote about appreciating the little things in life like going to the pharmacy of your choice. Recently, I realized I find joy in another absurd little thing – finding brand-new unused syringes and medical supplies tucked away in cupboards in my house. 🙂 We still use syringes to give E all her meds through her G-button. She probably is old enough to take pills by mouth, but with her very sensitive gag reflex, we are content to keep giving meds this way for a few more years yet. Her G-button is a security blanket for all of us in that we can give her fluid boluses when she starts to get dehydrated, and we still routinely use it most days for one bolus. Having a button is so normal for E and she really owns it, so we don’t have problems there. The problems are making sure we have enough adults on hand to care for E that know how to use and change her button, and that we have enough supplies on hand for both her button and her meds. G-button kits like E has cost our insurance around $450 and we can only get one kit per quarter. So if E breaks a button, we have to have a spare on hand, go to the surgery clinic at the hospital for a new one, or order one and pay for it out-of-pocket. Thankfully, we’ve never had to order one out-of-cycle, and we’ve always had a spare on hand. We’ve also had great service from our home health companies for ordering the kits and supplies we need. Since the kits and supplies cost so much though, I try to only order exactly what we need. Therefore, it was awesome to find some spare med lines, bolus connectors, and bolus syringes tucked away in one of our cupboards at the beginning of the month. We regularly wash and reuse the lines, connectors, and tubes, so these spares were from previous kits where only the button had been used. When a line or tube gets to be worn out, we throw it away and replace it with a spare. So I did a happy dance when I realized we had more spares than I thought we did! The same goes for syringes. We use 8-9 syringes of various sizes each day for giving meds. That is much less than we used to use before and right after transplant, but it still amounts to quite a lot of syringes. (This is also one of the reasons why I spend more time washing dishes by hand than I would like.) We prefer to use Baxter Exactamed syringes, as they’re durable, fit all the bottle stoppers on E’s medication bottles, and have tight-fitting caps. But, those Baxter syringes are expensive. We’ve ordered packs of syringes several times, and then just wash and re-use the ones we have until we can no longer read the dosage lines on the syringes. So, imagine my delight when I found not one but two bags of brand new syringes stored away by my husband in different cupboards! Truly friends, it’s the little things in life that bring the most joy. And when you’re a Transplant Mom, you live for those little things!

M and E were excited to take our first hike of the summer at our local forest. E had her water bottle and the trail map packed in her hiking backpack.
E loves to be outside and is much more adventurous now that she’s older. Here she and M are running through the sprinkler in the backyard.

COVID isn’t over

May 27, 2021 /

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

May 9, 2021 /

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

May 4, 2021 /

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

April 27, 2021 /

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.

Homeschool

April 21, 2021 /

We always talked about homeschooling, but we never thought we’d actually do it. E was supposed to go to parochial school, and then COVID hit and we decided to keep her at home to keep her safe. Now here we are, two weeks away from being done with our first year of homeschooling and we’re planning to continue it. There are many benefits of homeschooling that we like, such as having a flexible schedule, tailoring our girls’ education to their interests, and using different teaching methods. But there are definitely many other benefits that I only realized fully after speaking to a friend about why we’re continuing to homeschool. Those benefits include the following:

We don’t have to adjust med times for school or teach school staff to give meds. We would have had to shift E’s med times earlier in the day if she had gone to school, and we would have had to teach faculty and staff to give her meds since the school we planned to send her to didn’t have a full-time nurse on staff.
Related, I don’t have to worry about something happening to E’s med backpack at school – whether that’s meds being spilled, being left out in the heat, being forgotten, or curious little fingers going through it.
We don’t have to worry about E bringing home contagious germs from school!!!
We don’t have to worry about E meeting her drinking goals at school. I worried that E’s progress in drinking would regress with going to school because she would be too busy having fun that she would forget to drink. And I couldn’t expect a teacher to police her all the time when they would be responsible for other kids as well. I worried that we would have to resort to multiple boluses a day in order to meet her fluid goal.
We don’t have to worry about making sure her teacher applies sunscreen for recess. One of E’s anti-rejection meds causes an increased risk of sunburn, therefore increased risk of skin cancer. So she always needs to wear sunscreen or sun protection when outside. This is one of those little things E needs that we are so accustomed to, that it fell off my radar of things I would need to tell E’s teacher. It wasn’t until explaining to a friend all the things I do for E that I realized something so little could be time-consuming for a teacher with 17 other students to monitor.
We don’t have to worry about bathroom incidents when gut bugs happen. While E is completely potty-trained, she sometimes still needs help in the bathroom when she has a gut bug.
We don’t have to worry about missing school for appointments and hospital stays! While the principal of the school we intended to send E to said that the school would be completely accommodating of E’s medical appointments, there still would have been assignments and class experiences she would have missed and needed to catch up on. Now we just work our school schedule around appointments.
We don’t have to worry about medical alert bracelets and allergies quite so much. I still want to get her one for when we travel, but we would’ve had to get E a medical alert bracelet for school in case of an emergency. A medical alert bracelet would let first responders and medical personnel know about E’s transplant status and her allergies to the class of drugs known as NSAIDS.
We don’t have to worry about her g-button coming out. While having a g-button feeding tube is normal for E and second-nature now for the rest of us in the family, we always worry about the button coming out when E is under the care of someone outside our immediate family. The button coming out isn’t as big of a deal for us anymore now that E is a big girl, but if it gets pulled out in play on accident, it is a shock and does cause E some pain. Putting the button back in is easy if you know what you’re doing, but you need to be trained how to do it, and there is a very small window of time to get it back in before the hole in E’s tummy where it goes closes back up. If that hole were to close, E would have to have surgery to have the g-button put back in. That’s something no one in our family wants. E is very good at protecting her button, but kids are rough, and sometimes it comes out while she’s playing. I have had to rush home from work in the past to put her button back in and I would have hated the trauma for everyone involved if I would’ve had to rush to school to help with a button incident.

Sometimes I worry that E will miss out on the formative “school” experiences – like riding a bus, going on field trips, playing with friends at recess, putting on school programs, etc. But then I think about all the times I’ve seen her face light up when she learns an especially fun new fact or how proud she is to have mastered writing her letters and I’m so glad we’re in a position to homeschool her. I know homeschooling is a common alternative to regular school for transplant families and that it works well for many of us. But I also know that there are many transplant families who aren’t in a position to homeschool. They have to do everything I listed above and more to work with their schools to get their kids the education they need and deserve. My hat is off to all those families making in-person school work for their transplant kiddos.

E’s first day of homeschool preschool. She had to wear one of her favorite dresses, of course!

It’s Always Something

April 16, 2021 /

It’s been a while since I’ve written a post, but that doesn’t mean nothing’s been happening. It always seems like we have some new fire to put out or some new obstacle in E’s path to tackle or overcome. The past few months we’ve dealt with both health issues and insurance issues. I mentioned to my husband that just when I think we’re in the clear something new pops up and he likened it to the old Bugs Bunny cartoons when the characters beat each other up – one arm goes down in the fight, but then a leg flies into the air and nothing is ever still. A silly comparison, but a very appropriate one at the same time.

In November, E had some drastically low neutrophil (white blood cell) counts that if left untreated, could have put her in the hospital. (As most of you know, white blood cells fight infections.) Since E is immunosuppressed, she really needs her neutrophils to work at top-level. Her team of nephrologists decided to prescribe daily labs and injections until E’s level came back up to a safe number. E also had another round of low hemoglobin at the same time (anemia is a chronic battle for her thanks to her kidney disease), so she had to receive injections to boost her hemoglobin production then too. So for two weeks in November we took her to her infusion center every day to receive injections in her thighs. None of us know what caused her neutrophil level to plummet, but we breathed sighs of relief when all of her levels rebounded in December. We thought that was the end of this latest new hurdle to clear.

It amazes me that after everything she’s been through, E always says she wants to be a doctor or nurse when she grows up. Here she is in her first lab coat on Christmas morning.

In February, E had her usual 6-month check-up at her transplant clinic. While there, her doctor asked me if I’d start taking E’s blood pressures again at home, because her BP at the clinic was a little high, and her latest lab results indicated that her cholesterol was high. She said that she wanted to keep a closer eye on E’s BPs given her cardiac history (extremely high blood pressures thanks to kidney disease), and that we needed to implement a low-sodium diet for E. In August we had to implement a high-phosphorus diet for E to boost her phosphorus level. So, I was a little worried that things were starting to spiral out of control for us. My husband assured me that E’s high BP was probably just an anomaly since she was excited to be at the clinic, and that taking BPs regularly at home wouldn’t be a big deal. Sure enough, within two weeks her doctor was satisfied that her BPs at home were just fine. We now take her BP once a week and send a log of her pressures to our transplant nurse coordinator every month. As for the diet change, we introduced lower-sodium products to E’s diet and hope that these changes combined with the whole-grain foods she already eats to increase her phosphorus will contribute better lab numbers.

In March, E had yet another round of weird lab numbers – this time labs showed low platelets again. E’s kidney disease (autosomal recessive polycystic kidney disease, or ARPKD) also causes problems with her liver, so her liver labs are closely monitored. Because E had months of consistently low platelets, after the March labs, her hepatologist wanted her to go in for an out-of-cycle ultrasound of her liver and spleen to see if either of these organs were having new problems and causing the low platelet numbers. E’s transplant nurse coordinator reassured us that this ultrasound wasn’t something to worry about, but when a doctor orders unscheduled tests, we tend to worry a bit. So, I took E in for a detailed ultrasound of her liver and spleen at her transplant hospital and then went to see her hepatologist for follow-up the week after. The ultrasound revealed that E’s liver is doing ok although it is fibrotic (which we knew), and that her spleen has grown a bit more from last year. Her hepatologist told me that this ultrasound had good results. It didn’t show anything overly concerning to her and would be a good baseline for her to keep a closer eye on both the liver and spleen. And because both organs looked unchanged except for the growth of the spleen, it indicated to her that the cause of E’s low platelet numbers is probably one of her anti-rejection medications. So, she recommended a medication change to address the low platelet numbers. If that doesn’t help, then E will go in for an endoscopy to see if she has any varices that might be causing the low platelet numbers. Varices are enlarged or swollen veins. They are new to us, but are a common symptom of ARPKD and can be very volatile and scary. We are really hoping that the medication is indeed the culprit of the low platelets. E will go in for another detailed ultrasound of her liver and spleen in six months to see how both organs are doing.

March did bring us some good news in the ophthalmology department. E has a few problems with her eyesight due to being a preemie and she sees an ophthalmologist every six months too. This time at her check-up, we heard that her eyes are actually getting stronger from the patching we’ve been doing. Her doctor said that if we patch her left eye a couple hours every day for the next six months, it is possible she might not need her glasses anymore. That was good news for sure!

Now it’s April and we’ve come back full circle to issues we dealt with in November. E’s nephrology team decided to address some of her low lab numbers by changing the dose of one of her anti-rejection meds. The plan is to see if her lab numbers improve with this change. If they don’t, then we’ll switch one of her meds per the hepatologist’s recommendation and see if that new med fixes the lab numbers. Thankfully, this change went off without a hitch from the pharmacy. It just took some time for the team to decide what they wanted to do for sure. But unfortunately, we received word from our primary health insurance company that all the extra injections E received in November to boost her neutrophils and hemoglobin would not be covered because they were not deemed “medically necessary” according to the insurance company’s criteria. What is super frustrating about this is that we filed an appeal of the insurance company’s refusal to authorize these injections in November and thought we’d submitted all the information the company needed. Now, six months later(!), we are receiving a whole new round of denials. It takes me, E’s transplant nurse coordinator, and a financial coordinator from the transplant center to file all the paperwork needed to appeal one of these adverse decisions from the insurance company. We thought we’d successfully appealed one denial of the injections only to receive notice of a new denial two weeks later. When I called the insurance company about the latest denial, the representative told me that the insurance company didn’t have enough information from us from the November appeal in order to move the process along for us. If I wouldn’t have called, we would never have known what the problem was – neither we nor E’s doctor had ever gotten follow-up correspondence from the insurance company stating that more information was needed. So I’ve spent considerable time once again this month on the phone with insurance and corresponding with E’s transplant office to assemble all the records we need to satisfy the insurance company’s need for information about E’s health.

My best advice for anyone dealing with an insurance company is to never be afraid to call Member Services. Always take detailed notes, ask for the name of the representative working with you, and never be afraid to ask questions or ask for a supervisor. You are entitled to know what’s going on with your health plan. And don’t be afraid to ask for help if you don’t know how to find the information you need from your health insurance. In the past, if I’ve needed help navigating insurance, I’ve asked for help from one of our social workers. They’ve always been very helpful. If you don’t have a social worker assigned to you already, ask your hospital or clinic if there is a social worker on staff who could assist you. No one deserves to be in the dark about hospital bills! We are hopeful that between all of us working on E’s case that we’ll get her insurance denials successfully resolved – even if it takes us another few months.

Drinking Goals

February 8, 2021 /

Fluid is a big deal at our house. Since E has a kidney transplant, part of taking care of her transplant is making sure that her kidney gets enough fluid each day to continue working at optimal levels. This means that every six months, E’s doctors determine how much fluid she should consume each day based on her height, weight, and age to maintain the health of her transplant. Not an overly big deal, right? Well, it’s not a big deal for an adult. With an adult patient, doctors and nurses can explain why it’s necessary to drink a lot each day. It’s different with a kiddo though, and if you’re 16 months old when you get your transplant, it’s even harder to understand why everyone is making you drink all the time.

E was still on a feeding pump when she received her transplant, so meeting her fluid goal each day wasn’t hard at first. But as she got older and started eating and drinking more orally, we sometimes struggled to find the right balance of eating and drinking. Sometimes her feeding tube did a lot of the work since we simply couldn’t explain to a toddler the importance of drinking. Sometimes we used her feeding tube to give fluid because we battled puking from overloading E’s stomach. Then we really got honed in on a daily schedule for fluid intake that seemed to help most days. We were able to wean E off her feeding pump and onto three to four gravity boluses per day, supplemented by whatever we could give her in a sippy cup. Gradually, as her drinking skills grew (E had to relearn how to eat and drink after transplant), we reduced her boluses and increased what we gave her in a sippy cup. Now, at five-and-a-half, E is to the point that she can meet her fluid goal just by drinking some days. Most days though, she gets one small gravity bolus in the morning to start her trek to the day’s goal, and then she eats and drinks her way to meet her goal by the end of the day.

Even though E usually makes her fluid goal every day, it is still tough for all of us to make sure she reaches it. Some days it’s like pulling teeth to get her to drink, and a running tally of her fluid is always at the back of my mind. Her current daily goal is to get 1800 milliliters of fluid, or 1.8 liters. A five year-old doesn’t want to sit and drink almost two liter bottles of fluid every day! They want to get up and play, and they don’t understand why they need to drink all the time. E knows that she needs to drink to take care of her kidney because that’s what we’ve ingrained in her, but a little kid doesn’t really understand why all that fluid is necessary.

Our current method to meet E’s fluid goal each day is to start off with a bolus, as I already mentioned. Then we fill up a water bottle with 700 milliliters of water that she must finish before the day is done. We’ve found that this Bottled Joy water bottle is perfect for her because it has two measures of fluid, a straw, and a handle. So we can always see exactly how much she’s drunk and we can easily tell her how much more she needs to drink at any given time. The handle makes it convenient for her to carry the bottle herself. We have a white board in our kitchen where we record her bolus amount, how much water we put into her water bottle each time, and how much milk or juice she gets at meals. We also keep track of fluid-based foods she eats like jello, yogurt, pudding, applesauce, ice cream, and popsicles. Most often, we record her milk, juice, and other fluids using a digital kitchen scale. When a scale isn’t available for liquids, we use measuring cups. Every time we go on a trip, we take a scale with us and we always try to have snacks or bottles that have an exact measurement on them so we can record how much fluid E gets. On summer days, we try to give E extra fluid to avoid dehydration and we keep her inside at the hottest parts of the day. We know that on any given day, if E doesn’t meet her fluid goal and gets dehydrated, her kidney health could be in jeopardy and IV fluids are the next course of action in order to prevent rejection.

Water bottles with straws work well for us, but E still needs motivation and constant reminders to drink each day. Last year, we instituted a sticker chart for E’s fluid goal. Both E and her sister M like stickers a lot right now, so E and I designed a four-week daily chart for her. If she met her fluid goal each day, she got to choose a sticker to put on her sticker chart. Then if she filled all or most of her sticker chart, she got a prize – like ice cream and cheese curds from one of her favorite fast-food restaurants. The chart worked great for about eight months, and then fell by the wayside with the busyness of the Christmas holiday season. I’m not sure if we’ll go back to the chart in this new year. Right now I’m more concerned with preventing E from biting the straws on her water bottles so we can keep using the bottles. Since learning to drink again, she’s had a problem with biting when she drinks (her sucking mechanism didn’t resurface like we thought it would). Straws seemed to be a good way to teach her how to suck again and allowed her to drink more at a time than if we required her to just drink out of an open cup. But she’s bitten holes in her sippy cup lids and the silicone bite guards of her water bottle straws. Recently, she bit one bite guard in half! She does drink out of open faced cups at mealtimes, but we feel a water bottle is the best solution for nighttime, trips, appointments, and carrying around during the day. With a water bottle we don’t have to worry about spills or filling it as often. If she could stop biting, we could get her different water bottles with bite guards that aren’t so rigid. We haven’t found a recipe for success to get her to stop biting though.

E proudly displaying her first drinking chart. We sent this picture to her transplant nurse coordinator.

My hope is that someday E will get to the point where she’ll know she needs to drink a set amount each hour and that she’ll just do it. Maybe that will be with the help of a smart-watch that alerts her to drink every half hour, or maybe that will be with the help of a straw water-bottle that has different times marked on its side. In the meantime, we’ll keep watching her fluid intake like hawks, constantly reminding/encouraging her to drink, and hopefully find a way to help her keep her water bottles in good shape.

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