Our Teddy Bear's Journey

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

Mind your own business

So, I wrote about this on Facebook, but it STILL bugs me. When we drive to Iowa City for clinic visits, I put Teddy in the passenger seat. I do this for several reasons. First, he mostly just cries if he’s in the back by himself. I can’t do that. I can’t listen to him wail and throw up for 4 hours on a weekly basis. And stopping to calm him down just means the trip takes longer, because he’ll start crying as soon as we get going again. I think he’s lonely, because just simply moving him to where he can see me makes a HUGE difference.

Second, he vomits. And his vomiting can sometimes make him choke, and sometimes it can just SOUND like he’s choking, but I have decided it’s not safe, for him, me, or other drivers, to have me not sure if my son is choking in the back seat.

Third, Ok, yes, it’s convenient. If we were making the trip less often, I probably wouldn’t sweat it, but having him in the passenger seat means that I can feed him while I drive, get him a toy while I drive, etc.

I asked our nephrologist about this, and she said that it’s OK with her, and perfectly safe as long as there’s not an airbag. She confirmed with me that it’s not illegal, and cautioned me to not be a distracted driver.

So the other day, returning from Iowa City, I got out of the car in the rain and gathered up: the diaper bag, my pump, my “car bag,” Teddy in his carseat, and my drink. Three bags, a carseat, and a drink. And my keys. I’m headed – in the RAIN – to my door. Someone pulls up in the neighbor’s driveway (we share part of the drive) and gets out and yells up at me, “EXCUSE ME!” And I’m all, “What” in a voice that says, Lady, I’m holding a BABY and THREE BAGS in the RAIN and unless a part of your body has actually been SEVERED, I’m not interested in talking to you.

Here is our conversation. Things I actually said are in quotes. Other comments are my internal dialogue. My internal dialogue is usually this sarcastic.

“um, did you just take a baby out of that car?”

Seriously. I’m HOLDING the baby. No, lady, I materialized him out of thin air because I’m just that good. “Yes.”

“um. Out of the FRONT seat?”

“yes.”

She stands there in amazed silence. “Well, is there an air bag?”

Yes, because I’m a TOTAL IDIOT and THANK GOD that you stopped to inform me about air bags and carseats because not only am I an idiot but I’m also illiterate and have been living under a rock for the past decade. “Yes, but it is turned off when he is in the front with me.” (note, very impatient tone of voice here.)

“Well, you know that the back seat is the safest places for babies?”

“Most of the time, yes, but he has special medical needs that require that he be in the front seat some times. Every week, we drive out to Iowa City, just the two of us, to see his specialists. He has a tendency to choke and there’s not always a great opportunity to safely pull over and make sure he doesn’t stop breathing (yes, exaggerating, shut up) so his specialists in Iowa City said it was just fine with them to put him in the front when we’re alone together for long trips.” Beeyotch, now back away before I go Jackie chan on your a**. PS, it’s still RAINING.

“oh, well… I mean… I’m a nurse. I hope you can understand, because I’m a nurse…”

Oh, gee, yes, because your job is to stick your nose all in everyone’s business, then? Is that your job? NO I don’t think it is. That is the problem with Medicine today, LADY, is that nurses and doctors often think that they are the only ones who know anything and that the general public just can’t possibly have brains that they use for thinking so we have to rely on medical personnel to do our thinking for us. HUH, LADY? So, I totally interrupted her and said in a COMPLETELY snotty tone of voice of which I am NOT proud, “huh, yeah, ok, well, his specialists at the University have said that’s where they want him and I guess I think they probably know more about it than you do.” B.  Then I turned my back on her and went inside, FUMING, because SERIOUSLY. Like my life is not hard enough, that I need total strangers stopping me on the street to tell me what a shitty job I’m doing? I need that? She’s freaking LUCKY I had my hands literally full. (ok, really, not really – I would honestly never get physically violent with someone.)  (note, deep down inside I realize she was just trying to be a concerned citizen. But there is nothing inherently dangerous about a baby in the front seat as long as there is no airbag.)

What I SHOULD have said:

Version 1: Well, if you REALLY want to be helpful, Ms Nurse, I’ve just had a very long day and I still have to do night meds, measure and prepare the feeding pump for his overnight feed, complete a dressing change on his PD Cath exit site, and also cook dinner for the family and get everyone ready for bed. How about you come in and help with some of that. Are you familiar with sterile procedures? I can walk you through the dressing change, assuming you fit into size M gloves.

Version 2: Oh, well, if you REALLY wanted to help out, consider the following. Consider if you have any patients who are children with chronic illnesses that are devastating, life-threatening, and overwhelming. Consider what their lives must be like, day in and day out, and what that means for their families. Consider what their mothers go through – becoming a nurse instead of just a mother to their kid. Giving meds, experiencing surgeries and hospitalizations. Struggling to cope emotionally and physically while also taking care of the practical health needs of their baby or child. Struggling daily to do the best they can. Having to justify their decisions to everyone under the sun – doctors who don’t understand, other parents who criticize, family who don’t understand, friends who don’t understand. Why don’t you nurse, why do you pump, why the Gtube, you should do X, I would never do Z, etc. etc. etc., all from people who actually don’t know what they’d do because they’ve never been even close to being in your shoes. Then consider if what those people need is a TOTAL stranger to stop them on the street and start criticizing them. Consider that. Because, lady, the answer is NO. No, they do NOT need that.

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Reflux

A few weeks ago, the Neph prescribed medicine for GERD (reflux, though with Teddy, we have to specify that it’s for gastro reflux, because he does have kidney reflux, too, lol). I didn’t fill the Rx. He had one episode in front of her that was terrible. Retching and crying and arching and it was horrible. But it only happened one other time and I didn’t think that warranted medicine.

Then a week later, we started the puking. Oh my gosh. He pukes, ok? I mean, at least once a day, usually twice. On GOOD days. But he started puking everything. Tuesday through Friday, I kept most of his overnight feed in him, but only about 25% of his day feed. Not nearly enough. He was starting to pee less, even. So I asked some lovely ladies online, if you treat for GERD, what were the symptoms that prompted treatment and did they improve. And I got back “arching the back, whining and clutching at the chest, and retching/crying.” Oh. Wow. That’s Teddy. Yeah.

So, feeling like an idiot, I filled the Rx. I had been attributing the chest grabbing to skin-level discomfort from his PD dressing, and didn’t think much of the arching/crying. Retching is something he does a lot, but is common in kidney babies, so… *shrug.*  Idiot.

Walgreens sucks rocks (love my language on here lately?). I was giving them one last chance to straighten up and fly right because I LOVE their refill app, but they screwed up again and so I was unable to give him any on Friday. Medicap  – our new pharmacy – was able to get it to me Friday night and we did his first dose Saturday morning. (pharmacist recommended giving it to him before his first feeding of the day, but, um, seriously. I do meds three times a day, and I’m not adding in an extra time just for this one. He gets it with the rest of the AM meds when I unhook him from the feeding pump.) By Sunday noon, we noticed a marked decrease in vomiting, NO chest grabbing, no arching, no crying/whining/arching, and hardly any retching. YAY.

And I feel like a total jerk for not filling the rx sooner, but honestly – I just didn’t want him to need it. That’s really what it comes down to. I didn’t want him to need it, and I didn’t see what I needed to see.

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Six Months

Yeah, I wrote this near his 6 month birthday, but I wrote it in my word processing application, and then kind of forgot about it. sorry.

 

Six months into it, I feel like I have a better handle on things. Our routine has been established, and that’s a big part of it for me. Meds, dressing changes, clinic visits, labs, pump feeds, gravity feeds, feeds feeds feeds, barfing, always having a towel handy, pumping pumping pumping. It’s all become normal. That helps.

It’s not so overwhelming. It’s become our new normal. The kids are adjusting. “Mom’s pumping,” “Teddy throw up,” and “mask or leave” are part of their vocabulary now. (wear a mask if you’re going to stay in the room during dressing changes, or leave the room.)

I’ve even learned to live with the constant “is this it?” anxiety, to the point that it doesn’t feel like anxiety any more. I know it still is, but it’s not that soul-crushing, heart palpitations, difficult to concentrate anxiety.

I still feel pretty self-conscious about bottle feeding, and even more so about tube feeding, but the bitchy part of myself that I cultivated while breastfeeding, babywearing, and cloth diapering the other two (um, back before “everyone” was doing those things) has helped quite a bit. I just put on my Keep Walking face, and mentally dare anyone to comment. (You know how they tell phone customer service agents that people can sense when they are smiling even if they can’t see them? I think people can sense my Back Off aura, too.)

I still resent the time commitment – and I acknowledge fully that the time commitment is going to go up once he starts dialysis.

I’m comfortable enough with the stats of what we’re facing that I’ve started to let myself research kidney transplant issues, and post-transplant life. Slowly, because the little I know so far is overwhelming. I’m learning that I have a limit right now of what I can handle. I don’t need to know everything all at once. I need to take it slow, as long as there’s no hurry.

I can read Facebook entries from parents of regular kids that read “oh no! My 3 year old has a fever of 99!! What do I do?!?!?” without FIRST jumping to a reply of “Get down on your knees and thank God that your big worry is that she might have a virus that will make her feel bad for a few days, not that maybe she’s got a line infection or peritonitis that will require at least one surgery, hospitalization, and perhaps alter her life forever, because when MY kid gets a fever, that’s what we worry about.” (Um, I still do go there. I just don’t go there immediately. And that’s a win in my book.)

I can listen to other parents freak out over the newborn heel stick (the one for genetic diseases) because it’s so “invasive” without resenting them TOO much for their comfortable existence – the same one I used to enjoy.

I feel like I’m coping better. I’m not so angry, I’m not so overwhelmed, I’m not so resentful.

I still hate it. I hate it. I still, in moments alone with Teddy, apologize because his life is so hard and it’s not fair. I still hold him close and weep. I still hate what this is doing to my older kids. Though other people tell me that they’re learning compassion and patience and to roll with the punches, I don’t see it. I see anxiety, frustration, and the unfairness of it all. I see disruption. I see a tired mommy who is just. worn. out. And they deserve more, so much more.

But at this point, I’m able to see how far we’ve come as a family, and that gives me hope that we’ll be even better off in another six months.

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Current Features

Features

Features2

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Milk Storage System – pumped breastmilk

So, since the point of this blog is twofold, to keep people current on Teddy and to provide information and support to other families going through similar things, I thought I’d put up another few posts about how we do things. This is how I currently store Teddy’s milk.

Milk Storage

I always start a day with AT LEAST the current day’s day portion and night portion in separate glass jars in the fridge. In the morning, I put a ReCap lid on the day portion jar, so I can easily pour from it. Then during the course of the day, I pour off into bottles 100 mL at a time. He eats by mouth whatever he wants over the course of 2 or 3 hours, and whatever is left, I bolus in through his G-Tube. I am finding that this system (100 mL at a time, start over every 2-3 hours) is helping me keep up with his feeds – he was tending to fall behind during the day – as well as keeps the milk fresher when it’s so hot.

milk storage

Throughout the day, as I pump, I just cap the bottles from the pump and throw them in the fridge on the top shelf. I just let them accumulate during the day. When I get up in the morning, part of my morning routine is to prepare the milk for the next day or two. I measure out whatever his current day quantity is and pour that into a large Mason jar and cap it with a plastic cap. I measure out his current night quantity and pour that into a separate Mason jar (I currently am using a pint size for overnight and a quart size for day). If I don’t have quite enough for the full portion (for example, his current overnight is 450 mL, so if I end up with, say, 365, mL, I write 365 on the top of the plastic cap with a dry erase crayon and throw it back in the fridge.

Milk Storage

I only measure milk once a day. I don’t rebottle, consolidate bottles, or do anything else with milk during the day.

Currently, I’m pumping about as much as he eats in a day. Some days I’m a little short, some days I’m a little over. Every once in a while, I get 30-50 mL over. Over the course of a month, that sometimes adds up. I like to keep enough for the current day, the current night, and the next full day and night unfrozen in the fridge. If I ever find that I have more than that amount, I freeze any leftover. In the last 3 months, I’ve managed to freeze two bottles of 120 mL each. Not much, but better than what I was doing before that, which was going through my freezer stash like crazy.

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Handsome.

handsome

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Siblings

Sibs

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Okoboji

Our family owns a time-share at a resort on Lake Oboboji, and our week was last week. We had a good time, and I got over my nervousness about being so far away from our hospital. Teddy even got in the pool – and loved it – at least up to his waist. And I ignored the looks of horror on the faces of the other kids and parents at the kiddie pool.

Teddy Hanging Out

Teddy Hanging Out This was Teddy’s first pool experience. He sat in the water for 2 minutes and then went to sleep.

Bubbles
The Lake
Arnold's Park
Teddy and I mostly stood around and watched at Arnold’s Park, but the big kids had a great time.
Arnold's Park(that other girl in there with Genna is her cousin Joey.)

Arnold's Park
Looks like there is PLENTY of room in there for a new kidney!!

GeocachingWe went geocaching. Only picked up 3 caches, but we didn’t try too hard.

Back Carry!
First Back Carry!

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Feeding Pump

Feeding Pump

Just wanted to share a picture of the new feeding pump in action. It’s a small backpack designed to be worn by the child. The consequence of this is that it cannot be worn by the parent, lol. I like it, though. It’s very portable.

And, yes, this is actually a picture of me eating a S’More. I had a funny expression on my face, so I cropped it out. 🙂

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Last week

Well, last week was supposed to be our second “skip” week ever. (After 6 months, we’ve finally graduated to every other week clinic visits – until then, we’d driven to Iowa City every week.)

Then, on Monday, Teddy started acting funny. Of course, it could be a number of things. Normal baby stuff like teeth, it could be his ears bothering him, etc. Or it could be special baby stuff like his kidney ceasing to function.

And we didn’t worry too much about it when he was still not right Tuesday or Wednesday. He started waking up crying during the night and was hard to soothe. Rubbing at his face constantly. He stopped eating much by mouth (like, far less than half of his DAY portion – I was doing bolus feeds plus dumping a lot of extra in his night feed to compensate). Fussing and crying. Then we started looking at him, trying to decide if he looked puffy. And you know how it is… if you try not to think of elephants, suddenly all you can think of is elephants? We looked at him, and the more we looked, the puffier he seemed. And his blood pressure was unacceptably high – 130/80 range.

We were headed to the ped’s office on Thursday anyway, so I called the nephrologist to see if they could put in an order for a metabolic panel (his kidney function tests) to be drawn at the ped’s office, and I’d feel better all around. I would have them check his BP for me, too, recognizing the high probability of user error.

And then the nephrologist got concerned, even though I said about 100 times that it was probably nothing and I was probably just being paranoid and overly cautious.

>> Note here that I’ve seen other kidney moms comment before that they feel  like a first-time parent with their kidney baby, because you worry about everything. I’ll add that I was never this uptight about Wally, ever. I have a pretty lax attitude about illness, and am really a wait and see type of person.   Also note that a kidney mom friend of mine on FB said on Thursday that she found her instincts were about 50% right with her kidney baby. She would know when something was wrong, but most of the time she couldn’t determine WHAT was wrong. That’s clearly also me. <<

So the nephrologist wanted me to drive in. And he was completely fine. The nurse suggested his face rubbing might be environmental allergies, and the little booger was ALL smiles and giggles and hardly any tears, even when he got a shot.

Me = paranoid

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