“At least he’s so young”

One of my Black Friday (yes, I shop Black Friday and I refuse to feel any shame about it) stops is always JoAnn Fabrics. Yesterday, I ran into a customer, who asked about Teddy, which led to the lady at the cutting counter asking about his transplant, and a longish conversation about young children with heavy medical experiences. She said the same thing I’ve heard numerous times in the past – “it’s a good thing he’s so young and won’t be affected by all this.”

I understand the sentiment. The person who says this is invariably trying to find a silver lining, and also believes that a child truly won’t be affected by – or remember – their early life experiences. However, I really fail to find any truth or comfort behind those words.

To start with, I’m not sure there’s really EVER a good time for a child to be diagnosed with an illness or disease that is life-altering, life-limiting, and/or life-threatening. As with most largely negative life experiences a child may face, there are pros and cons to it happening at any age – but there’s really not any age when these experiences are ideal.

Quite a few people have expressed to me that they think it’s better for Teddy that he’s just always been this way – he doesn’t know any different. However, I really can’t get on board with this being one for the “pro” column. He’s never known a life that didn’t involve lots of people hurting him, lots of doctors, lots of hospitals, lots of nausea, being fed through a tube, and unnatural holes in his body… remind me of how this is an awesome thing?

Many people believe that babies don’t have working memories. But science is showing that this just isn’t true – and the experiences of thousands of medical-needs babies are certainly showing that it’s not true, as well. (How can you say he doesn’t have any memory, when he started having negative reactions to people in the green OR scrubs from a pretty early age – even when those people were people he knew and liked?)

I personally think it would be so hard to be experiencing things that are scary and painful and that capitalize on our most basic fears – being held down and being hurt – when you lack the ability to communicate about it. It seems like that would be worse than being able to verbalize your fears and your dislike of the situation, and being old enough to understand what is happening, why, and that it will all be over soon. In fact, I wonder if sometimes adults tell ourselves that it’s easier to deal with bad stuff when you’re a baby or toddler simply because babies and toddlers can’t tell us how they feel about it. Sure, they cry. But they don’t ask questions and they don’t tell us in plain words how much they hate it.

People also tend to believe that early life experiences are not remembered by – and do not affect – children when they’re older. I will agree that people can’t generally remember with any detail events that happened when they were just babies or toddlers. I don’t agree that those early experiences do not affect their lives. I’m not going to go as far as some (like our President) and claim that infancy is some sort of critical window that determines the course of a child’s life, since that position is not supported by the current body of knowledge of neuroscience, but experiences in infancy certainly play a role in forming the person we are to become. (here is an interesting article on the subject.)

I think we step into dangerous waters when we say that infancy – or toddlerhood – or preschool – or grade school – or high school – is a “better” time than any other time in childhood to have intense medical experiences, to wrestle with mortality and life-threatening diagnoses. There is no good time.

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Today you are two

Teddy is 2

Dearest Teddy,

Wow. I can hardly believe that you turn two today. As I said when you turned one, there were days we weren’t sure we’d make it this far.

The two years have both flown by and crawled past slower than molasses in January. I can’t believe you’re already two – and I can’t believe you’ve only had two years to experience everything you have experienced.

At two, you are still so busy. You have things to do. Mostly, the things you need to do involve taking things out of containers, picking up things that I’ve set down exactly where I want them (like my phone – you’re always bringing me my phone!), or your favorite – tearing up things with your teeth!

Yes, you are a voracious teeth-tearer. No paper or cardboard – no matter how thick – is safe from your teeth. You’ve destroyed board books. School work. Dollar bills. Artwork. Pictures. And lots and lots of boxes. This is not my favorite toddler activity.

You’re still a relatively new walker, but you’re confident and  unafraid. Now you’ve mastered climbing – at least on low things – and you couldn’t be happier. Gravity does not apply to my Teddy, no. When you’re done sitting in your high chair, for example, you just stand up and step off – confident that either someone will be there to catch you, or that you’ll sprout wings and take off.

You love to snuggle – especially in the morning. Well… you have two options for morning. Either you want to snuggle for a while before really waking up – or you pop your eyes open and wonder why we’re not already out of bed and playing with toys.

You delight in new skills. You’ve been diligently working on stepping up onto things, stomping, and jumping, though you have not yet mastered these skills.

It’s been great being your mommy these last few years, Teddy. Here’s to a great (and perhaps more boring?) next year.

A year ago. Two years ago. This year.

Last year. Nov. 15. We were discharged from UI after Teddy lost his 4th PD catheter. His little peritoneum and abdomen couldn’t handle another one. His peritoneum was wrecked from fungal peritonitis. Peritoneal dialysis was no longer an option for him.

That was devastating. And it was the culmination of one of the worst periods of my life. Our lives. We had spent the better part of August, September, October, and November in the hospital, away from the other kids, away from daddy, dealing with unexpected surgeries (five surgeries August-November), complications, issues. And that damn wreath. I hate that wreath.

We left the hospital a year ago yesterday planning to have to start Hemodialysis. Having to make a Plan B for how we were going to make that work (we settled on me and the kids moving to IC and finding a nanny). Uncertain about the future. Scared. Worried.  We were in limbo. Again.

Two years ago.

Mid-November. We’d left the care of our first perinatologist because she didn’t do births, and we wanted to at least get someone on board who WOULD be able to supervise the birth if a hospital birth became necessary. We had moved care to Dr. Asshat, coordinating with our midwife. Two years ago, we were still hoping for another homebirth. Two years ago, by this point, we’d heard:

  • The baby has two kidneys and one looks small but the other looks healthy.
  • The baby has one kidney and it doesn’t look good.
  • The baby has one kidney and it looks fine.
  • The baby probably has no kidney function at all.
  • The baby might not make it.
  • The baby will be fine.
  • The baby will not need a NICU and won’t need close monitoring after the birth (this from Dr Asshat)
  • The baby will need to be born possibly as early as 32 weeks and will have a lengthy NICU stay.

We were under so much stress. From researching possible kidney issues, researching issues related to the pregnancy and delivery. From family calling to argue with us over our choice of homebirth again if at all possible. From worry.

The amniotic fluid had begun to be a concern, and by the 24th would practically disappear completely. I was spending literally all of my days drinking as much water as possible. All I did was drink water. I was so tired of drinking water. It made no difference (and, logically, I knew it wouldn’t). We were in limbo. Things were uncertain. We were stressed out. We didn’t know what the future held. We had NO IDEA what the next year or two would look like.

This year.

Teddy has some ongoing issues that are concerning. We’re not sure what’s going with him from a GI standpoint. His liver continues to be an issue. We’re still waiting from some tests from genetics.

But I don’t feel the weight of uncertainty on me any more. More so than at any other point since about August 2011, I feel like the future’s going to be OK. (That in and of itself has me concerned, but that’s just part of the psychosis of having a chronically ill child – you grow to be afraid of the good times.)

Compared to this time last year – compared to this time two years ago – things are going REALLY WELL for us.

Today’s clinic visit

I left the big kids at home this time and just brought Teddy since we had two appointments and I was afraid the day would be long. As fate would have it, everything was running like clockwork and it was the fastest we’ve been in and out of there in a long time. Ha.

Not much to report on the nephrology side, happily. Teddy gets his viral levels checked every month for Epstein-Barr (EBV), BK virus, and Cytomegalovirus (CMV), since these are three viruses that can cause trouble in transplant patients. They’re things most people have had and without even knowing it, and then the virus lives dormant in your system for the rest of your life. But when you have a suppressed immune system, they can start causing mischief. EBV, in particular, is one of the main causes of PTLD in pediatric transplant recipients.

Last week, his EBV came back positive. Yikes. I was really good and didn’t freak out much. As it turns out, our lab here doesn’t do the viral levels the same way that UI does, and evidently the count was still pretty low, and with the way they do the labs it was less concerning than it would have been had we gotten that same result at UI. We knew he’d be exposed to EBV at some point – virtually all adults have had it. His kidney has it (because Tiff had it). Most people get exposed to it around 2 or 3. So we’re not surprised to see this… but we’re going to watch it closely and keep a really close eye on things like his lymph nodes and his tonsils (which are likely going to come out, more on that later). If the numbers keep going up, we’ll get worried. But if they stay where they are, we won’t. 🙂

That was really it.

We’re stopping Nystatin. I’m changing the multivitamin he gets (though not quite in the way I wanted to, lol). His weight was lower today than it’s been (10.1 kilos). Labs looked good. 🙂 We will repeat labs in 2 weeks and we don’t go back for a clinic visit for THREE WEEKS!!

I forgot to bring my syringe for his food, and I’ve learned that at UI when you ask for a 60 mL Catheter tip syringe, they bring you a luer lock syringe. Yes – NEVER EVER be caught without a catheter tip syringe at UI. I don’t think they have them. So we had somewhat of a frustrating half hour where I tried to figure out how I was going to get his food from the bottle I brought it in into his stomach. It was a mess.

GI visited. They thought his poop looked mucousy, and I wanted to say, “you think THAT is mucousy? That’s nothing.” But I didn’t. We discussed my favorite topic – his ongoing mystery pooping issues –  and then discussed what they’d like to do about it. We’re starting off with stool cultures, checking for parasites, infections, boogeymen, boogers, teeny tiny aliens, or whatever else in his poop. All the same stuff he’s been checked for countless times.

When those turn up nothing extraordinary, the next step involves being admitted for some sort of test where we withhold food for a period of time. It sounds like great fun. The old me would have grilled them for details, but the new me has decided I will have time to grill them for details later. I’m not going to worry about it for now. I can’t decide if I like the new me. 🙂 I actually have no idea what the name of this test is, to be honest. I’m sort of in “Grit the teeth and get through it” mode. I’m not particularly concerned about the lack of weight gain, though if he doesn’t start gaining soon, I’ll hit my threshold on that. But the poop has me concerned, and we’ve kind of done everything at this point that’s noninvasive. I’m OK with following their recommendations on what to look at next. His GI tract has been a big mystery to me since… I don’t know. A long time. I’m ready to figure out if there is a problem.

How can I help?

I love this post. I particularly identify with this quote:

The times I have felt the most taken care of and touched by people’s service has been when they went ahead and just served us how they felt led. Many times after the fact we realize that it is exactly what we needed, even if it was just a drink from Starbucks or a run to the grocery store for us. These impact us more than you know. … If you feel led to serve a family, voice how you would like to serve them and then do it. Don’t wait on them to ask for it, because most likely they will not.

I know I personally have moved to asking people if I can do something specific that is within my ability to do and that I think they would appreciate; or that I would appreciate if I were in their place. “Can I bring you a coffee?” or “I’m going to the store this afternoon and would be happy to drop something by – what do you need from the store?” The person can still turn me down if it’s not a good fit (opening the door to, “is there something else you need?”) but I’m not putting it on them to come up with what they need.

This is partially because I’ve been so particularly touched by those who’ve messaged me while I’m in the hospital with Teddy, “I’m driving through Iowa City and I’d love to bring you something – what can I bring?” My answers have varied from Coffee to fresh fruit to french fries from McDonalds. It would feel awkward for me to send someone to the store on my behalf normally. I would not answer “is there anything I can do?” with “can you go to the grocery store and buy me some fresh fruit and some frozen Hot Pockets breakfast sandwiches.” Hello, bossy much? But when the question is phrased such that the person makes it clear they’re already planning to go to the store for me, but merely want to be directed in what specifically I’d like, it’s easier. (And people have generally figured out that what I mostly need when we’re in the hospital is provisions from outside the hospital, since I typically am not able to leave the building.)

 

And her #3 – Don’t Minimize. I’ve found that many parents of medical or special needs kids tend to talk more to other parents with their child’s same diagnosis, because that’s a safe place where most people will say something like “oh, crap” or “that sucks” instead of “oh, it’ll be fine.” At the same time, an “it’ll probably all be ok” response from these other parents-in-the-know is much more reassuring because it’s usually based on fact, not wishful thinking. I’ve learned there are people in my life with whom I don’t share a whole lot because it hurts to hear only denial (or blame) in return. Don’t be that person.

 

You know you’re a hospital regular…

A while back, the moms in one of my kidney moms groups had a thread going of You Know You’re In The Hospital A Lot When…

I was thinking about this again this week.

You know you’re a hospital regular when…

You’re friends with the custodians, a lady from the mail room, the cafeteria checkout personnel, the coffee shop guy, and the ladies who drive the PATmobiles. (The PATmobile is a golf cart that carries patients across the hospital. Patient Assistant Transport)

A good number of your possessions are labeled in Sharpie with your name and room number. And the room number’s been crossed out several times.

You buy two of some things so you can just keep one in your suitcase.

You keep a suitcase packed at all times.

The regular storage spot of a few of your possessions is in your hospital bag. 🙂 (I have a tote bag that’s my Suitcase Supplement that lives inside the house – my suitcase lives in the car – and holds my computer case, extra knitting, the Kindle, and a few other things that just live in there.)

You see hospital staff more regularly than your relatives.

You check out books at the hospital library, you do not have to give them your patient’s name, because they already know it.

Your child’s correct diaper size and a few favorite toys from the playroom are waiting for you in your room when you get there.

You walk down the hallway at the hospital, and at least 1 out of every 5 medical personnel you pass know you or your child by name.

Other parents contact you (or friends of friends contact you) when their child needs to be admitted, because you know all the ins and outs.

You have a standard care package to bring to those parents, consisting mostly of things you’ve hoarded from previous stays.

You have your child’s hospital ID number memorized.

You’ve mastered the art of pushing a stroller and an IV cart, and can do so through the cafeteria as long as it’s not a busy meal time.

Your kid has a special game he plays just with the ladies behind the desk on the floor.

They ask if you’d like an escort from your room to wherever you’re going (Xray, clinic, whatever), and you really don’t need one.

The OR staff knows when they come to get your kid that they don’t need to bring a bed/crib because you’ll just carry him anyway.

Hospital admissions serve as the backbone of your mental calendar. (When was X event? Let’s see… Teddy had just been discharged after a line infection…)

You know the date of the housekeeping lady’s son’s wedding – and she brings you the soft toilet paper when you’re admitted.

 

What’s Working

I feel like I spend a lot of time talking about the bumps and not enough time talking about what’s working. Because it’s the things that aren’t working that occupy my time. But I need to focus a bit more on what IS working. So, let’s talk about what *is* working post-transplant.

– Motor skills. Teddy’s made HUGE progress in motor skills. I mean, he’s walking. He’s almost running. He climbs a wee bit. He still falls down quite a bit, but he’s making great progress.

– Erythropoietin. Teddy’s failed kidneys didn’t make erythropoietin. It’s a hormone that your kidneys make to tell your body to make red blood cells. Kidneys that aren’t working don’t make the hormone. So Teddy received weekly shots of a synthetic version of the hormone. We needed to continue the shots for a month or so after transplant, but were able to stop by about 6 weeks post. Yay! The Epogen really hurts going in, so we were very happy to leave this injection behind. Teddy’s awesome new kidney, Lefty, is making all the erythropoietin he needs.

– Iron storage. Teddy’s never been good at iron. He had to have iron infusions for a while. Post-transplant, he’s been on the max dose of elemental iron for his weight. Last week, we stopped the iron (to try to improve some of his other labs that are bad). This week, his hemoglobin was still right in the target range. Wahoo!

– Calcitrol. Calcitriol’s another hormone made in your kidneys (and your liver, to a much lesser extent). Vitamin D (the vitamin) can’t be used in your body. Your body converts it to the hormone Calcitriol. In your kidneys. (I had this link rattling around in my bookmarks – it talks about Vit D and how it becomes hormonally active.) You can give a person with kidney failure all the sunlight and cod liver oil that you want, but if their kidneys can’t convert the vitamin D to the hormone calcitriol, it won’t do one bit of good. So, Teddy had to take a synthetic version of the hormone calcitriol. (Notably, until the very end before his transplant, when things were really getting out of control, he never needed actual Vitamin D. His Vitamin D level was fine. He had plenty. His body just couldn’t use it, because it was unable to convert the vitamin into the hormone.) Teddy’s awesome new kidney is happily converting the Vitamin D into the useable form, the hormone calcitriol.

– Bone Health. Bone health is kind of complicated. Vitamin D (actually, the active form Calcitriol), Calcium, Parathyroid hormone, phosphorous, and a few other things all play a role. When you have a growing baby whose body can’t convert Vit D into a useable form, who has calcium levels that are variably wonky, who has very high Parathyroid hormone, who pees out his phosphorous… you have a growing baby who is growing kind of crappy bones. Many kidney babies get renal rickets – a form of rickets found only in the renal population. Teddy did not have issues anywhere near that bad – in fact, his bones are pretty OK. But NOW his bones have no reason to not be growing straight and strong. 🙂 (This is a reasonably decent discussion of the role these things play in bone health. I’ve seen better, but I can’t find it.)

– Pee. Teddy’s never had trouble peeing, but he pee was “poor quality.” Yes, his pee was criticized for being subpar. But now he has awesome pee. His awesome new kidney is able to hold on to essential nutrients like sodium, phosphorous, etc., that his old kidneys couldn’t hang on to.

– Filtering Blood. This is of course the big one. Teddy has a kidney that actually filters his blood. It takes the waste products out and keeps the good stuff in. Throughout ALL of the bumps Teddy’s had since transplant, this one has remained rock solid. His kidney has always, always done its main job of cleaning the blood. So, so amazing. Go, Lefty!