When we were ready to hear it
We were in the hospital for exactly two weeks, and we worked really closely with the pharmacist and the nurses there about all of the medications, dosing them and when to give them, and nutrition after transplant, limitations, all of those types of things.
It was one of those things that they gauged when we were ready to hear it. And it was probably a good week, week and a half after, when Hannah was finally out in the wagon and somewhat communicating with people – that was the time to really start talking about it.
Mother of Hannah, 4
Wondering about side effects
You never know how it makes her feel because she’s not verbal. She’s on her pump all night, because she has to have 50 ounces of fluid for the kidney to be perfused, and she gets her nutrition overnight because she has an eating aversion. So in the mornings, sometimes I wonder if the meds she has might make her feel yucky, but then I think, “Oh, it could just be from all the fluid in her belly!” I don’t know. You read on the bottle and you read all the literature on the meds, and you wonder, “Does she feel that?” But she’s not verbal! I look at her and I think some mornings she’s more tired than other mornings, but that could be from a lot of different things.
But that’s like a million-dollar question to me because, as a mom, I wish she could just talk and tell me, but I think that she wakes up and she has good days and she’s happy. And there are days that she’s not happy, and I don’t know if it’s the meds, or how it makes her feel.
Mother of Lydia, 6
[Lydia received a Kidney Transplant and has Down’s Syndrome]
Very manageable
His regimen decreased by maybe four or five pills he no longer takes. It changed a lot during the first year. Medicine was taken away, so now he’s down to maybe ten or eleven pills, very manageable.
When he first came home, because it was such a big quantity of pills, he had to take two morning doses – you know, we had to stagger it by an hour because he just couldn’t take them all at once. Whereas now, he just takes them all at once! So instead of giving medication five times a day, we now give it three times a day, because it has cut down, and his ability to just take them has also improved.
Mother of RJ, 12
Good things in the midst of it
By the time Christmas rolled around, she was on 16 pills in the morning, 16 at night, and I think 5 in the middle of the day: it was just ugly. Because they didn’t know what it was, so they were just doing everything! Then her kidneys overloaded, so they took everything off except the bare minimum – and she couldn’t handle the IV anti-fungal, which is like the premiere thing, so I was really upset about that. But she went home on an oral med for the histo, and it actually was a blessing because she now takes 6 pills in the morning and 5 at night and that’s it. She’s on the lowest anti-rejection meds they’ve ever had – it’s so small that they have to get it in liquid form, and it’s once a day! So all her stomach problems from all of the early meds, because she was on so many, all that’s gone! Her tastes buds are back. So it ended up in some ways being a real blessing. There are good things in the midst of it.
Mother of Eva, 13
Teaching her to swallow pills
She was never very much of a medicine child –she gave us a hard time even when she would be on antibiotics as a baby – so we opted to place a stomach tube, to ease the transition for her to get all that medication until we could teach her to swallow pills. Which happened very quickly –we taught her to swallow pills within, like, six or eight weeks after transplant.
It was great. I can’t remember what department helped us, but there was somebody at the hospital that works with kids to teach them how to swallow pills, and she’s been doing it ever since.
Mother of Laura, 14
We’re going to have to figure something else out
Alanna: I hate salt. Hate it.
Mom: That was because of being here.
Alanna: I had to take a salt pill. Ew.
Mom: Imagine, she had low sodium and we’re on the cardiac ICU unit – there’s no salt anywhere, like, not on the crackers, not on nothing! And they’re laughing saying, “You have to,” and it was so hard. It was either liquid or a pill, and she’s great at taking her pills. I can’t even – I’m bad when it comes to taking pills, she can just swallow a whole handful down at one time, and that pill she could not get down.
Alanna: I had to chew that. It was so gross.
Mom: And then they tried to put it in Gatorade, the liquid, so it’s like salt water. I mean, you can’t! And then we made the doctor try it, huh? We made him taste it, and he went, “Oh God!” He didn’t make her take it after that. He said, “We’re going to have to figure something else out.” I’m like, “Please!”
Alanna, 15, and mother
Keep the conversation open
As a teenager, she had trouble sticking with her meds schedule, absolutely, because it made her feel sick…We set up timers where she had a watch and she had a timer, and if she was out, she just carried her meds with her to take them. She would go into the bathroom to do that because she didn’t want people to know…because again, she looks perfectly fine, so it was just a blatant reminder to her that she wasn’t really fine. Psychologically that was difficult.
What other things did we do…we kept the conversation open, and I tried not to be shocked or appear shocked, or appear disappointed, or appear judgmental, when she told me things. You just practice that neutral face, because you don’t want to shut the conversation off. Because it’s better to know.
[Later] Make sure they understand the parameters of their meds. Make sure they know what it means to be compliant, without using the word compliant. Make sure that your greatest fears are not what’s driving how you’re reacting, because a lot of times fear can cause kind of unreasonable reactions. Basically, you set them up with, “This is how you get your meds. This is what you need to do. These are my suggestions –” you know, that you always have a couple of days’ worth of meds in your purse. That’s something I always told Samantha: “Just keep it with you, and that way if you end up spending the night somewhere, you pop them in the morning when you wake up.”
Mother of Samantha, 22