Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Common Post-Transplant Questions Answered, #1

1. Will he start eating? Can you get rid of the Gtube?

Not sure. Eating is very complex. You don’t realize how many things factor into eating until you or your child has a problem with one or more of the factors.

One of the factors has surely been nausea and general icky feeling from his kidney failure. Teddy’s likely felt pretty crappy since he was born. When you feel crappy, you don’t usually want to eat. He’s NEVER been a good eater. Ever. From the day he was born.

Another factor has probably been his very active gag reflex and self-protective tongue-thrust. When he was younger, it was just a reflex with him. He thrust things out of his mouth with his tongue. Now, I personally think it’s somewhat psychological. He has a complex relationship with food and with things in his mouth, and he doesn’t generally trust things in his mouth. He gets panicky if he loses control of items in his mouth – like crumbs.

Another factor? He’s not generally hungry. This gets kind of challenging – he has to be given calories and fluids to live. But giving him all the calories and fluids he needs via his tube means that he’s really never hungry. You usually don’t want to eat if you’re not hungry.

Vomiting probably plays into it. Food makes him vomit. Why would he want to eat it?

Habit. He’s not in the habit of eating.

There’s just a lot going on there.

We’re working with an occupational therapist, but for the most part – Teddy just has to want to eat.

Before his transplant, he was taking some of his blends orally (maybe 20 mL a day) and some fluids orally (maybe 10-20 mL a day) and some meds orally (5 mL). All by syringe. He will suck from a straw or drink from a sippy, but he won’t swallow the water he gets that way – he spits it out. I don’t know why.

Would it be nice to have a kid who just eats food like every other 20 month old? Yeah, it would. But it honestly also kind of irks me that this is what everyone asks. All the time. Will he start eating normally?

Because I just don’t care that much. Now that we’re past the transplant, the feeding issues will probably take on more of a focus, but for the most part, you can’t force a kid to eat. All of you parents know this. Some kids start eating right away. Some kids never have eating issues. Some kids are still 3-4 years past their transplant and they still don’t eat.

So… we just don’t know. Maybe. Maybe not. I’m cool either way.

 

As far as getting rid of the Gtube, I will not be comfortable removing the tube until he’s been eating all calories orally and drinking all fluids orally and taking all meds orally for at least 6 months, including through an illness.

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Last few days

So…

Today, I feel like Teddy made another big leap in the part of his recovery called “getting back to being Teddy.” He stood up, and he also threw a huge temper tantrum.

But for the post part, he still sleeps a good chunk of the day.

Today, he’s had no morphine. At all. Last dose, before bed last night. (or possibly 5 this AM.) After some thought, I decided to go ahead and give his night dose tonight, just because.

 

His incision is infected, just under the skin level. Yesterday, Transplant came and opened up a few places along his incision and kind of dug around in there, scooped out a bunch of yellow chunky stuff (? I didn’t ask what it was) and irrigated it with saline and hydrogen peroxide. They were supposed to come back today but didn’t (don’t get me started on this). I heard they’re going to do it tomorrow again, but… well, I’ll believe it when I see it.

 

He’s up to 30 mL breastmilk every 2 hours since about noon today. We’ve just been ramping things up since he was on 5 mL every 6 hours last week. Tonight, he starts back on the feeding pump, 20 ml/hour for 6 hours. (normally, 100 ml/hour for 6 hours at home) Hopefully tomorrow after his procedure, we can start his blenderized food again. πŸ™‚

 

He’s got really watery poop. Oh, man. I mean, they were going to start him on mirilax this morning because he hasn’t been pooping enough… and now I’ve changed 10 poopy (more like watery) diapers since 5. (it’s 9 now.) ugh. ugh ugh ugh. Cellcept (one of his antirejection meds) can cause watery poop, so we’re watching it for now… we’ll see.

 

So that’s what’s going on with Teddy.

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Best. Day. Ever.

(Teddy has had a fever – his temp is still elevated but hasn’t gone over the cutoff they established for defining “fever” since last night. Everyone’s being very cautious and he’s on a few antibiotics and we’re watching him closely.)

Let’s start from the beginning.
This is NOT a picture of Teddy’s kidney, it’s one I found on the internet. But this is what Teddy’s left kidney looked like prenatally:

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And it looked slightly different after we drained it after he was born, but not substantially better.

Here’s what his right kidney’s always looked like:

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Last night, Teddy developed a fever, and it’s got everyone being pretty cautious. We got sent over to ultrasound. And I got to see this:

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I cried.

I still cry every time I see it.

It’s a kidney. I mean, it’s shaped like a kidney. Look, you can see the outer parts where the filtration takes place and the inner part that collects the urine. It looks like a kidney.

IT LOOKS LIKE A KIDNEY.

I’ve been wanting to see something resembling a kidney inside this kid since I was 20 weeks pregnant.

AMAZING.

As I said on Facebook when I posted this, I’m not sure I have any way to really communicate to those of you who are NOT parents of transplant recipients how emotional this is to look at. I mean, the picture of the nice plump pink healthy kidney sitting inside his abdominal cavity was great, but this has more meaning to me – this is the insides of the kidney – the important parts. The “kidney” parts. I’ve never seen Teddy’s kidneys from the outside (except once they took them out), but I’ve been looking at those fuzzy, misshapen lumps on the ultrasound for over 2 years now.

I just can’t get over it. πŸ™‚

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So I stopped pumping

And I’ve been reluctant to write a post about it, because it still makes me kind of sad.

I stopped pumping in early June, Teddy was not quite 19 months old.

During our admit in May for Teddy’s liver biopsy, I was only able to pump maybe twice a day and for maybe 10 minutes max. He just needed my attention pretty much constantly.

When we got home, I went back to my regular pumping schedule, which had been to pump for 60 minutes every 2-3 hours during the day, last pump around midnight and first pump at 5:30. But after a week of that, I was only getting about 100-200 mL per DAY (he uses 600 mL per day). For 6 plus hours of pumping, that just wasn’t very much.

So I decided to cut back on pumping, and over the course of the next week or two, I cut back to pumping just three times per day, and then to two times per day. A week of twice daily pumping, and I was averaging under 100 mL per day. Most days, it was 30-50.

It just stopped being worth the effort.

So I stopped. Thanks to some awesome moms who shared their extra milk with us, I have a LOT of my own milk in the freezer for him to use during this time, so he’s still on breastmilk, and will be for a while. That makes me happy.

And the last several weeks at home were nice, not having to interrupt every activity to go pump. We could go run errands without my getting anxious about needing to get home to pump. And at the same time, I somewhat missed having a reason to sit on my lazy bum for 6 hours every day and watch TV and knit. πŸ™‚

This hospital stay’s been a LOT easier, not having to worry about pumping so much.

The whole ER trip/kidney stone is less complicated.

But it’s odd and sad that I have a baby for whom I’m not making milk.

Genna still nurses, so I technically am still nursing and still lactating. She says she gets a little, so I’m not completely dried up.

And I still feel terrible that I’m not able to continue making milk for Teddy as long as did for his siblings. He’s the one who could use it the most, and he’s the one who’s going to get it the least. I knew from the outset that there was no way I’d be able to pump for him as long as I nursed the other two, but it’s still a hard pill to swallow.

I’m not as sad about it as I thought I would be. To a certain extent, I just haven’t had time to dwell on it. We’ve been busy worrying about his liver and his worsening kidney function and his transplant and it hasn’t left me time or energy to have emotions about anything else. And that’s OK.

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what’s going on

We’re mostly hanging out. He usually has good mornings – playful, does some sitting. Then he takes a long nap which is interrupted 100 times by the entire hospital staff coming in to bug him, one at a time, coupled with the world’s LOUDEST doors. (note to UICH construction crews: quieter doors in the new hospital, please.) Sometimes he has a playful period in the late afternoon or evening, or sometimes, he just kind of naps and lays calmly until bedtime. He does a LOT of just laying and chatting or laying and looking at books. This is NOT Teddy. I don’t know who this mellow child is, but he’s not my child. I like him a lot – but Teddy doesn’t have many mellow periods. πŸ™‚

He’s had 5 mL of breastmilk now and seemed to do good, so we’re going to get all crazy and move to 5 mL of breastmilk every SIX hours (instead of every 8 hours, how we were doing the pedialyte).

They’re working on his tacro level – adjusting the amount of prograf they give him in order to produce the desired level of the drug in his system – it’s somewhat of a trial and error process to find out how much he needs.

We’re talking about trying to take him completely off the basal (continuous) drip of his pain meds and move him to just the button and see how that works. We can always turn it back on if we need to.

Making progress finally. I know he was making progress all along, but I feel like we’re finally seeing some actual progress. πŸ™‚

His incision is a horror show. The doctors are not worried, but from his belly button down, it’s just NASTY.Β  Belly button to top of diaper is very weepy. Top of diaper to end of incision (probably 4 inches, and that’s with the diaper folded down as far as we can fold it while still having it serve its purpose) has separated about 1/3 an inch in places, less in others. And it’s healing, but you know how nasty stuff can look while it’s healing. We’re keeping it moist with saline-saturated gauze. It’s just… ugh. icky. To be clear – NOBODY who is a trained health professional has seemed concerned. They’ve all said it looks OK. They’ve said the scar will be pretty gnarly there, but nobody’s looked at it said there was a single thing wrong with it. But to me, the mom, who is not a trained health professional, it’s pretty icky.

When you read that, please keep in mind that I watch surgery on TV for fun. It takes a lot to ick me out. This is icky.

 

 

 

 

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Respect those who make choices different from your own

A few years ago, I wrote a blog post with this title for Natural Living Des Moines, and its focus was on organic vs conventional farming. But the same idea applies to the realm of health care choices for you or for your children.

There are few things in healthcare that are just cut-and-dried. There are few situations where you’re choosing between A (the devil) or B (heaven on earth). Each family has to read the relevant research (or talk to the relevant doctors) and make the best decision for their child, or their family. The research a family does may include talking to others who’ve faced the same decision, but the family may make a decision different from those to whom they’ve talked. And that’s OK.

For some families, the most “natural” approach will be the right one, from a personal and a medical perspective – they’ll prefer to use herbs or food instead of drugs if possible. And for some families, they may prefer this type of approach, but it’s not right for their child from a medical perspective. And for some families, they may think herbs are akin to voodoo and that’s ok, too.

For some families, a minor outpatient procedure to correct some minor issue might be the right solution, whereas for other families, just waiting it out is the right solution.

For some families, feeding their tube-fed child formula from a can might be the best solution – or it might be the solution they tried first and it’s working so let’s not rock the boat. For other families, feeding their tube-fed child with whole foods is the best solution. For other families, feeding their tubie with whatever the rest of the family is eating (chicken nuggets and Frooty Pebbles included) is the best solution.

Not everyone has to agree on the “best” approach.

You might have decided on the best approach for your situation, for your child, for your family – but you haven’t come up with the best approach for all of mankind.

I think most people in the medical-needs community are pretty good at this. We’re sick of being judged by families who have no concept of the types of decisions we’ve had to make, and we do a decent job of not judging other medical-needs families.

But we’re not always great at it. We are, after all, still humans. (well, I mean, SOME of us are super-human, but most of you…Β  PLEASE I’m kidding.) There’s still some of that snobbery that comes into play. There’s still some of that “I need others to make the same decision I made in order to validate that I made a good decision.” And there’s still some of that “I have to put down the other possible choices in order to make my own choice look better” mentality. And it’s ridiculous.

Inasmuch as a part of this blog’s purpose is to help other families facing the same or similar circumstances, I try to explain, when we’ve had decisions to make, the research, the thought process, or the reasons for making each decision. I try to do so, not with the intention to persuade, but with the intention to explain. So someone comes along googling about one of the topics I’ve shared here, and they can read some basic background information, they can read my research, they can follow my links, and they can see how I made my decision. And they might say, “hey, that sounds right for our family, too.” Or they might say, “hm, this thing that’s a priority for Sarah just isn’t a priority for our family, and because our priorities are different, we’ll probably end up making a different decision.” And that’s OK!!

I don’t need other people to handle situations the same way I have in order for me to feel good about my decision. And other people knocking my decisions doesn’t make me any less confident that I’ve made the best decisions I could based on the information available, every single time.

And honestly, I enjoy reading about other families in similar circumstances who made different decisions, and what led them to that decision. It’s part of an ongoing learning process. It enables me to, in the future, tell someone who happens to ask, “we decided X, and this is what happened, but I know a family who decided Y, and this is what happened.”

So if you read this blog, or you happen across it while looking for specific information to help you make a decision, please feel free to comment on any of the posts that helped you with a decision – whether you ended up doing the same thing we did, or if you ended up deciding to do something completely different. This is how we learn from one another!

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Overall, I love our hospital

I know I can get a little owly from time to time, particularly on Facebook, about the various annoyances here. And there ARE annoyances here. No place is perfect. But, overall, I really love UI Children’s Hospital.

I was chatting with one of the custodians this morning – Cindy. Jose, the other custodian, has been cleaning Teddy’s room, but she knows us from previous visits and always stops to say hi to Mr Teddy. As we were chatting, she was telling me about how she recently had surgery and her doctor wasn’t sure she was ready to come back to work, but she missed the kids too much to stay home any more. πŸ™‚Β  And, she said, her coworkers would call and tell her X and such a patient was in and they were looking for you.

That is just plain awesome. She doesn’t have to care about the kids here. She doesn’t have to interact, learn names, chat with parents. But she does because she’s a kind, caring person. And she’s not alone. All of the people who are on this floor on a regular basis are generally very kind people who go above and beyond their jobs like that.

And I’m sure other hospitals are the same. I doubt children’s hospitals are in the habit of hiring grumpy trolls. But it’s one of the things I like about here.

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PICTURES!!

Now that I finally have my computer up, I can post some pictures. yay!

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Immediately post-op.

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Night night! Tucked in for the night after his surgery.

 

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After he was extubated, Teddy was not happy until Mama climbed up into the crib with him and snuggled.

 

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Look at all those IV pumps. Yup! We used all of those, and I think had even lost one at this point.

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Sleeping. He slept only fitfully for about 5 days. We had to tie his hands down (sniff) so he’d leave everything alone, but if I was with him, I was able to untie his left hand.

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His belly. Swelled up, but that lump is the kidney.

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On the move! Monday we were moved from PICU to the floor.

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Finally playful. Tuesday night, he played with toys a little. About 90 minutes of playful time. πŸ™‚ Β It was the first day he did more than whimper, cry, or whine. He’s noticeably less swollen, as well.

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Great morning

Teddy had a GREAT morning. I’ve been slacking on the blogging – he’s been so needy, I’ve been unable to get my computer out at all.

But this morning, he woke up and was fussy for a bit and then he was playful and happy for about 3 hours!! in a row!! It was like I had my Teddy back finally. He still can just lay on his back, but he was HAPPY!!

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Here’s a recap of the last few days: Monday, he got his IJ line pulled, and his foley catheter, and they placed a PICC line. His IJ was coming awkwardly out of his neck, so getting rid of that was AWESOME. Then we were transferred back down to the regular peds floor – yay!

I have a kidney stone I’ve been trying to deal with since early Saturday. I ended up in the ER Sunday and Sunday, Monday, and Tuesday are kind of a blur of pain, nausea, and narcotic-induced fog. I’ve finally hit the sweet spot of a good dose of pain meds that covers most of the blinding pain and doesn’t make me so nauseous that I can’t eat or drink. πŸ™‚

Teddy’s been having trouble with breathing, but not so much that people are concerned. He’s needed some oxygen overnights to keep his sats up, but he’s been ok for the last night or two. πŸ™‚ His kidney takes up so much space in his abdomen that it presses up on his diaphragm, reducing his lung capacity.

Though we were able to have a big bed up in the PICU, they won’t let us have one here on the floor, so I’ve been sleeping in his crib. Makes it hard with the kidney stone, and it means that if I get overwhelmed with pain or nausea during the night, too bad, because daddy can’t snuggle in the crib. 😦 I’m pretty pissed about this, actually. I get the safety aspect (once he turns 2, he’ll magically be safe in a big bed, evidently), but he’s not capable of rolling over right now, let alone climbing out of bed. huff.

I still can’t hold him. I mean, I am now *allowed* to hold him, but he’s so uncomfortable. He gets stiff and afraid when we move him for any reason, and he just can’t/won’t relax to be held. He prefers now to snuggle against my leg or arm while I sit or lay next to him in the crib. And that’s fine. His belly is still pretty sore – that’s a HUGE incision he has, and he’s still kind of swelled up in the belly, and it’s just sore all around.

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Mortality

I nodded off while sketching this out last night and accidentally published it. I unpublished it right away, but I know many saw it anyway. This is the final version.

I do not know what it is like to lose a child. Fortunately, I’ve only watched from the sidelines, observed as others have dealt with the death of their child.

But I’ve looked in the face of my son’s mortality more times than I care to admit, starting before he was even born.

It’s something that those on the “outside” are sometimes surprised to discover that us moms of kids with life-threatening conditions don’t actually discuss too much. It’s there, unspoken, with comments about surgery nerves. It’s there in support given to worried fellow parents when a child seems to be having a particularly hard time. But it rarely comes up plainly. We dont like to admit we think about it.

But yet it is always there. You always know your child is fighting for his very life.

So many times, I’ve heard, “but nobody knows the future. A perfectly healthy kid could die suddenly tomorrow.” Yeah. Not the same. Every parent knows this, but do you know many who really think about it? I mean, really think about it?

There’s something about facing your child’s mortality on a regular, ongoing basis that just changes you. Your fun moments are too often followed by “I hope we have many more like this.” Your plans for the future include “I’ll just be happy if he/she is alive to make the decision about college…”

It’s just always there. Sometimes it’s right there. Sometimes it’s further back. But it’s always there.

Not in any way similar to “my kid could get run over by a car tomorrow.” Because nobody ever really thinks that will happen to them. But parents of kids with life-threatening health issues know that it very well could happen to them. They’ve watched it happen to others with their child’s same condition. They’ve watched as kids they grew to care about pass away, and they’ve watched the parents they’ve come to know as they deal with the aftermath.

Unlike “regular” parents, these parents may have been listening to the radio when they suddenly think, “this is such a pretty song, it would be nice for my child’s funeral.” They might have thought about where they would bury their child, whether they would choose cremation. Not in a distant-future, do I want to buy plots for the kids when I buy my own, sense. In an “if my kid doesn’t make it through the night, how do I feel about the child area of Waveland Cemetery” sense.

That changes you, as a person. In good ways, and in bad ways. And you know I’m going to say that embracing both the good and the bad, the inspirational and the depressing, is a good thing. Don’t judge – just accept.

Facing my child’s mortality on an ongoing basis has changed me, and in ways that many people can’t even comprehend, in ways that I can’t fully articulate. And that’s ok.

(for the record, I want to cremate. I want to have a few memorial items made from the ashes, bury the rest at either Waveland, or near my parents in Storm Lake, or I’ve considered near his uncle in Storm Lake, but I don’t think there are any plots available. I want I’ll Fly Away from O Brother Where Art Thou, and It Is Well With My Soul sung by Ginny Owens.)

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