Our Teddy Bear's Journey

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

Orange Juice

A few weeks ago on FB, there was one of those annoying photo memes going around (anyone else hate those things??) about orange juice. The actual quote from some guy named Wayne Dyer: “When you squeeze an orange, orange juice comes out – because that’s what’s inside. When you are squeezed, what comes out is what is inside.”

This isn’t so bad, and I agree, despite my inborn distaste for inspirational quotes. (I prefer Depressories to Successories ANY DAY.)

But the meme on FB took it a step further, explaining that, essentially, ONLY orange juice comes out of an orange because that’s all that is in there, and when a person is squeezed, they, too, only have ONE thing coming out – it’s either good or it’s bad, and whatever comes out is what’s inside.

Which is ridiculous.

In fact, when you squeeze an orange, you get orange juice and pulp.
I’ve pasted the nutrition facts for OJ below, but could only get part of it on the screen shot – this image doesn’t include all the vitamins and minerals in OJ. THAT is what comes out of an orange. Not just “orange juice.”

OJ

 

When you squeeze a person, you get… well, you don’t get “person juice,” because that’s disgusting. But you get Human-ness. Humans are full of good AND bad. Expecting only one or the other at any given time is ridiculous and if you have that expectation of yourself – or you let others have that expectation of you – you’re not allowing yourself to be fully human.

Now, you can pretend all you want that when you’re squeezed, all that comes out is joy and love and peace, but the fact is, even Jesus experienced negative emotions. And YOU are not Jesus. And you’re certainly not better than Jesus. YOU are a human and even if you are a believer who trusts God with the care of whatever experience is squeezing you, you are going to experience negative emotions, as well. And the last thing you need is some idiot Facebook meme judging you for it.

Be human. Experience joy. Experience sorrow. Experience grief. Experience thankfulness. Experience love and compassion. Experience hate and jealousy.

Let yourself walk through the halls of the hospital and feel insane jealousy for those OTHER patients – the ones who will be admitted, be treated, go home, and live their lives. Let yourself experience deep, deep grief for every silly little thing you realize that your new life won’t let you experience quite like you planned – even if you KNOW deep down inside that you’re being silly. Let yourself be mad, depressed, afraid, hopeless, helpless, anxious, sad, scared, whatever.

Don’t judge yourself for that, and don’t you dare let others judge you for it. Let yourself experience it…. and then let it go.

Then read this article about how negative emotions are the key to being a healthy person. “In recent years I have noticed an increase in the number of people who also feel guilty or ashamed about what they perceive to be negativity. Such reactions undoubtedly stem from our culture’s overriding bias toward positive thinking. Although positive emotions are worth cultivating, problems arise when people start believing they must be upbeat all the time.”

 

And SMILE!! Because you’re far more complex than an orange.

Advertisements
Leave a comment »

A quiet week?

I was going to say it’s been a pretty quiet week, but I guess I’m thinking now I have a skewed idea of “quiet.”

We got labs mid-week in town. And I put a pee bag on Teddy at like 12:00 that day, so we’d have some pee to take in to them at 2, but he still hadn’t peed by 2. I think he just doesn’t like the bag. Who would? I *knew* he had to pee, so after we got the blood work taken care of (or, at least drawn – I’m not confident they were doing the right stuff), I ended up taking the bag off him, holding him over the sink with a cup and asking him to pee. And he did. Yay. The lab ladies were amazed.

And then today (Friday), we went in for his skeletal survey (which is to check for evidence of various metabolic issues) at Blank here in town. Ugh. That was not fun. It was supposed to be a series of 18 xrays, but turned into 22 xrays because they had to repeat a few. It was not fun, their Child Life was kind of not helpful, and I had to argue to get them to let me be in the room. I have no idea what qualifies Blank to be a Children’s Hospital since literally every time we’ve ever gone there, we’ve been sent over to the adjoining Methodist (which is a regular/adult hospital).

This was the third time we’ve used Blank for something and the third time we’ve been disappointed. I don’t think I’ll be returning.

It’s entirely possible I’m just spoiled by UI. UI certainly isn’t perfect, but we get labs drawn by people who work with kids all day every day, and we get xrays done by people who work with kids all day every day. I don’t usually have to specifically ask for child life and the child life people come with an entire bag of tricks. (Today, the child life lady showed up with an ipad. Then she asked if he liked bubbles. I said yes. She said she didn’t bring any bubbles. I said I brought ours. The five people in the room all looked at me with strange looks. Yes, I travel with bubbles. Funny thing is, I’m not in Child Life!! They SHOULD travel with bubbles. Who doesn’t bring bubbles and the Baby Crack spinny toy?? Honestly! She just needed to bring bubbles and Baby Crack.)

Baby Crack: http://www.flashingpanda.com/files/1/LEDWandMeteor_Montage_s.jpg

Leave a comment »

Information comes trickling in…

Ugh. I hate that we’re back to Diagnosis Stage. I hate the big unknowns, the big Things being thrown around. The New Information and Changing Prognosis With Every Bit Of Information. I remember my pregnancy with Teddy, and it wasn’t a good time. Every visit, more information. Every visit, bad information. Every visit, something else. Oh! He might not make it! Oh! He’s going to be fine! Oh! He’ll have to be born at 32 weeks! Oh! He can stay in until 38 weeks! And then he was born and he was fine! no, wait! Not fine! Oh, wait! Probably mostly fine! Nope, Changed our minds, Definitely Far From Fine. But he might turn out fine. No, he’s not going to turn out fine!  yeah. I remember that. I can still go back to that place in my head and it was a bad, bad place.

He’s HERE now and I think that makes pretty much everything easier. There’s no guessing at this point – we can take definitive steps to determine exactly what we are or aren’t dealing with and THAT is easier.

But right now, this Results Trickling In From Genetics is kind of hard.

So they found something, but it wasn’t something they were expecting and it wasn’t what they were looking for. (I mean, this something is unrelated to the kidneys or the liver, it’s just an extra something.)

He *might* have an MCAD Deficiency. I’ll let you Google that, but it means he would have trouble accessing his medium chain fatty acids. This would mean he could fall into trouble quickly during periods of fasting. Working in his favor – between the feeding pump and his need to be on IV fluids any time he’s NPO or dehydrated, he’s never actually had a period of truly fasting.

So the next step here is a skin punch test that they’ll then ship up to Mayo and it’ll take forever to come back. It doesn’t sound all that terrible compared to, you know, kidneys that don’t work. So we’ll wait and see what the test says. The skin punch biopsy sounds terrible. Not looking forward to that.

And we do NOT have to wait for results from the biopsy to make a decision on transplant, so that’s SUPER GOOD.

The big bad scary part of today’s phone call with Genetics was that she threw out the names of the next few syndromes they were looking at, and said she didn’t know much about them. Hunter Syndrome and Hurler Syndrome. I wasn’t going to, but I of course Googled them and IMMEDIATELY wished I hadn’t. I want to hop in the DeLorian and go back to before she said that and have Teddy throw a big temper tantrum and make it so I couldn’t hear her when she said that. I’ll let you Google those, too, if you want. Let’s just leave it at – death before age 10.

I don’t honestly think he has either of these. They seem to have physical manifestations that he doesn’t have, but they also seem to be normal appearing and of normal health until symptoms start after age 1 or 2, so that little nugget of information is going to haunt my dreams for a while until we find out.

1 Comment »

Iowa City Trips Just Frustrate Me These Days

Part of it is just that I’m just plain worn out. 18 months of this – the longest I’ve gone between drives to IC has been 3 weeks, and that’s been RARE to go that long. I’m just tired of it. And I’m lately more aware of the fact that this is what life is just always going to be like. This isn’t going away. I mean, it’s not like I haven’t known that – always known that – but it’s more front-of-mind recently. And that thought wears me out.

And this constant One More Thing, One More Lead To Chase is wearing me down.

It’s like the TV show 24, where they chase down one lead, and it inevitably leads them to another lead, and then another, and another, and they have to chase down each one to get them to the next one… and eventually, they catch the terrorist (who inevitably has Jack’s daughter or current love interest as a hostage, lol). Except, in 24, they chase down all the leads in 24 hours. This is going to take considerably longer.

Maybe it’s more like Quantum Leap. Each test or visit, we leap into a different possible diagnosis, hoping that the next leap will be the leap home.

And we’ve always had some sort of plan. First, it was to manage Teddy’s kidney failure medically until he was so unstable that we decided he needed dialysis, and then we’d start dialysis and do that until 10 kilos, at which point we’d proceed with transplant plans. And then that didn’t quite work out, so we moved to the next plan: transplant  Teddy as soon as possible. And that didn’t work out. So now, our plan is…

what?

What is our plan? I don’t know. We don’t have one. Manage Teddy’s kidney failure medically until he gets more unstable again, and then give PD another shot is part of the plan… but the other part of the plan is a big question mark. It’s leaping from one guess to another until we happen to land on the right one. Evidently, it’s chasing down every single lead until it fizzles out.

2 Comments »

Today’s Clinic Visit

So.

UIHC does NOT excel at coordinating visits with multiple specialties. They do good at the scheduling part (though nobody seems to actually show up for their appointments on time – and I’m talking about the doctors). But not the actual coordinating. As in, “Teddy is seeing three specialists today. Each one is going to want labs.  Let’s get the lab orders from each doctor before sending him to the lab.”  Or as in, “Teddy is seeing three specialists today. Even though one of the specialists normally sees patients on the LEFT side of the clinic, since Teddy’s already in a room on the RIGHT side of the clinic, maybe we could walk those extra 50 steps and come to HIM instead of making his mom pack up everything that’s gotten unpacked over the last 3 hours and haul the backpack, feeding pump, blood pressure machine, box of toys from Child Life, and Grumpy Teddy and move to a new room.”

It was just kind of irritating the first few times we saw more than one specialty, but it’s just beyond frustrating now. They really ought to be able to do better than this.

 

Alright, so today. Labs. Before we head to the lab, I check: Teddy’s seeing three doctors today, do we have the reqs from each of the three doctors? Yes. And he needs a urine bag (it’s a bag that sticks to your nether regions to catch pee). Fine. Affix bag. Head to lab. No line, my favorite new phlebotomist (the teenage looking one) got him on the first poke, no digging. It was awesome.

GI was first – his liver enzymes were back up a bit, just staying in the general range where they’ve been, bouncing around, but clearly not trending down. Went over the results of the biopsy with me again. Explained that this Glycogen Storage Disease that is the current Guess Of The Week could cause them to need to handle Teddy’s care post-transplant differently, which is why it’s important to know whether it is or isn’t that in advance of the transplant. Fine. I sort of believe that. I mean, the child has survived his previous 12 surgeries and the biopsy (which itself resulted in 14 hours NPO) without issues, so I don’t know why this would be any different, but whatever. I’ve kind of stopped asking these questions because I really never get answers and I’m too tired to press it. Ultimately, it doesn’t make a difference, anyway.

Transplant coordinator had said she’d have someone from Transplant come talk to me. Nobody from transplant came. I wasn’t surprised.

Teddy’s nephrologist was next. His labs are looking OK. PTH back up a bit. Changed some meds around. Chatted a bit. She mentioned the possibility of sending his slides off to a peds liver specialist at another hospital for another opinion, since UIHC doesn’t have an actual liver specialist (explaining why we see GI for this, something that’s never made a LOT of sense to me).  Also discussed her Plan B for Teddy, which is that if he becomes unstable again (which is, unfortunately, just a matter of time), we’ll give PD another try. Unfortunately, Dr Pitcher would need to do that surgery. If it comes down to that, we’re going to have a Let’s Clarify Everything meeting with me, Pitcher, and nephrology to go over exactly what we all expect as far as catheter placement, type, etc., and honestly – I think I’ll also insist that one of the nephrologists is in the OR during the operation. That’s a dealbreaker for me. So we’re lodging that plan in the back of our heads and hoping we don’t have to use it.

Meanwhile, Teddy’s DONE. He’s sick of being held, he’s tired of the carrier, he doesn’t want to sit on the table, he doesn’t want to play with the trains, he doesn’t want to draw with the chalk, he doesn’t want any of our toys, he doesn’t want the ipod, he’s yelling and screeching and hitting and being a typical 2ish year old, because he’s an overachiever in that regard. You know, behind with the gross motor skills, but advanced in the temper tantrum department.

An hour or so later, we changed rooms so that Genetics could see us an hour after our scheduled appointment time. And, turns out, there was “a miscommunication” and NONE of the labs Genetics wanted were completed.

So, the genetics doctor measured Teddy with calipers all over and said stuff like “wide spaced nipples” and “tapered fingers” and fancy pants words describing every aspect of his physical form. This part felt icky. I wanted to say, “Hey! You’re talking about my precious adorable little boy here, people!!”

He seemed to think he would get away with saying “we’re going to be doing a variety of tests” without really explaining any more. I gave him Introduction To Dealing With Sarah Reid 101, which included endless repetitions of “what does that mean,” “why,” and “so what will that tell us?” Sadly, because Teddy was still largely throwing a fit, I didn’t take written notes, and because we were going on Hour Five of our visit, I didn’t manage to retain a lot of what he said.

Essentially, they’re going to be looking for *something* that could be an over-arching cause for the kidney failure AND the liver damage and maybe some of his other bits and pieces.

He doesn’t have anything *obvious.* It’s not anything “common.” It could be a chromosome deletion or duplication, but he doesn’t think so since Teddy’s normal appearing.

He’s going to be getting a buttload of labs, and also some urine tests. We started the labs today (second lab trip today), but were unable to get them all drawn (there’s a limit to how much blood you can take out of a person, and we were at our limit). No more draws for a week for him. And, because everyone farted around for so long before getting the (second) urine bag on him, we never did get a urine sample, so I’ll have to do that one next week. (We hung around literally another 2 hours waiting to see if he’d pee again.)

He’s also going ot have to see an opthamologist and have some sort of bone xray assessment that involves lots of xrays of every part of his skeleton, because the kid doesn’t have enough problems, we’re going to try to give him cancer, too.

The shitty news that made me want to excuse myself to go have a good cry: These labs will take at least a month. And we haven’t gotten them all started yet.

At least a month to get results, that will probably only tell them if they need to look further into particular things.

Sigh.

Realistically, we’re looking at fall before we can do the transplant. 😦

 

What pisses me off is that they KNEW they’d want these labs based solely off of reading his file and scheduling the appointment – seeing him in person didn’t affect the labs they wanted. WHY could we not have started working on these labs 2 weeks ago, at the time the appointment was scheduled?? Hm??? It’s like nobody else cares about getting his transplant rescheduled except me. Grr.

 

So that was today.

4 Comments »

Liver Biopsy Results and Where we Go From Here

Do you enjoy my random capital letters in my titles? I hope so.

This morning, I started bright and early with a call to the GI department at UIHC. I got their answering machine of course, but left yet another message, this one essentially demanding that someone call me today. They did.

Of course, we were trying to complete patient registration at the hospital here locally for labs at the time. And Teddy puked all over me, our bag, himself, and the floor. And the registration person actually got up and left and talked to her coworkers about how gross it was. Sigh.

So, anyway – the results!

It’s NOT autoimmune hepatitis. THAT makes me very happy. I will ask them at our next appt what the high SMA levels mean, then.

They said they saw some cells that you would expect to see with Hepatitis B, but his blood work shows it’s NOT Hep B.

They said it could be a metabolic disorder where his liver doesn’t make or store glucose the way it should, but you’d expect to see low blood glucose in that case, and he actually has somewhat higher blood glucose, but they said that the lack of low blood glucose doesn’t completely rule this out.

They also said that they supposed it could just be that the damage to his liver is secondary to his CKD. (I should note, this doesn’t seem to be too common.)

GI said as far as they were concerned, he was cleared for transplant. In the event the liver damage is just from the CKD, we would expect it to get better after the transplant, so really transplant is the best next step.

They did recommend doing another biopsy, but NOT through the skin – actually surgically. They thought this should be able to be completed during his transplant.

 

THEN they called back to say that renal wants us to talk with someone in genetics when we’re in on the 17th for clinic appts with GI and renal to discuss the possibility of a metabolic issue – BEFORE we reschedule the transplant. I’m beginning to wonder if we’re ever actually going to have a transplant.

1 Comment »

While we wait

While we wait for the transplant to be rescheduled, we’ve…

Gone to the Zoo:
2013-06-03 15.21.12

Gone for lots of walks on the rare days it’s not raining:
2013-06-02 20.13.19

2013-06-02 20.13.48

Eaten Doughnuts for Lunch:
2013-06-07 12.20.07 (she would not smile)

Fallen asleep on the way home from getting labs in our AWESOME Star Trek carseat cover:
2013-06-07 12.21.18

Done a lot of knitting. This is sock #1 of my Ayn Rand socks.
2013-06-04 14.01.00

 

And, like Tiff, I am also having dreams about the transplant. I dreamed that we went in for our next clinic appointment on the 17th and they said, “hey, call your donor, we decided to do the transplant this afternoon!”

5 Comments »

Benefit concert tonight!

The benefit concert for Teddy is tonight at Vaudeville Mews and 4th Street Theater.

The organizers have been getting a lot of great publicity for the event.

http://www.examiner.com/article/benefit-songs-for-teddy-reid-to-be-held-on-june-6

http://desmoines.metromix.com/music/blog_post/two-great-shows-for/3509030/content#post-comment

 

See you tonight! Teddy and I will be there just for a short time.

Leave a comment »

Liver Biopsy and Home

The short story is: Teddy’s liver biopsy went fine and we’re home now. We anticipate results  mid week.

The middle length story: Wow, it’s so much harder being in the hospital with Teddy NOW than it was when he was just 1 and could only sit – and barely. His anxiety level was higher, as well, and it just took basically continual effort on my part to keep him happy. He won’t watch TV. He doesn’t really like to read books. He really just wants DOWN. on the floor. And not to stay on the blanket I put down for him, either. Sigh. I took over 13,000 steps on Friday.

2013-05-30 15.46.29
This is Teddy playing in his custom hospital gown from the June Brandy Foundation. 🙂

The longer story: We had a few humorous – and not so much – moments involving the general Nobody Knows What’s Going On shenanigans that seem to happen lately. We showed up when and where we were told to be admitted and NOBODY was expecting us. 3rd floor sent us to 2. 2nd floor wasn’t expecting us. We were told to wait in the lounge for a while. Half hour later, someone from Patient Relations came to talk to us and apologize. She gave us a gift card to the cafeteria and said the room would be ready in an hour or so. Which I thought was a nice gesture, until I got downstairs and found out it was $5 and didn’t even cover chicken strips and a drink. I was pretty pissed about the whole thing, but followed my own advice and, recognizing that it wasn’t THAT big of a deal but that I was mostly just anxious and all out of Roll With The Punches, I called Randy and my sister to get my complaining out of my system so I could be polite to the people who would be providing care for my son.  They figured it out, but we ended up in a shared room, which kind of stunk (for both of us, Teddy was no treat as a roommate, I’m sure).

But I think everyone we saw apologized to us over it, where I didn’t think it was *that* big of a deal. The resident said he was supposed to offer us something as an apology and asked if I’d take parking passes. Well, hell, yeah – I’m not turning that down! And then the Nurse Manager came in and gave me a pass good for three hours. Hm. That’s worth $3. NOT that I’m not grateful, but I know that Free Parking passes exist. They gave them out in the peds infusion center last year. So… Sorry for the great inconvenience about which we’re making a big deal. Here’s $3. I should’ve asked for a free surgery or something.

And then his biopsy. I thought we were supposed to be doing it down in the Clinic, but Pain Management and the nurses and Child Life were all getting ready to use the treatment room on the floor. We just go where we’re told, and they told me Treatment Room. Teddy was getting ready to fall asleep, so I was sort of wandering around when I caught wind of the fact that SOME of the GI doctors and at least one of the pain management people were down in the clinic, whereas the rest of them were up on the floor. The GI doctor called up wondering where we were.

Other highlights: Transport couldn’t get an IV placed after 4 tries, so we called NICU to send up a nurse to give it a shot. They didn’t come up until after 9 pm. 10 minutes AFTER Teddy fell asleep. That wasn’t a good time. He was then absolutely hysterical until 11 or so, at which time our roommate started getting social calls from her girlfriends. I fell asleep around midnight when she was still talking, only to be awoken shortly after because his Potassium was too low and they needed to do a potassium bolus thru the IV, which involved 15 minute vitals for 2 hours. I nodded off at a few points during that whole thing, and then was up again at 4 when Teddy woke up because the nurse changed his diaper. I would rather have slept in a puddle of pee than risked waking him up at that point. Finally got him settled back down around 5 and slept for an hour before I had to get up to pump at 6. THAT was a WONDERFUL night.

He fell asleep in the wrap shortly before his biopsy was to start, so the gal from pain management just adminstered the IV drugs while I held him and then I laid him down and he was OUT. So easy. Everyone else in the room thought it was OK if I stayed, but the GI doctor said no. I think I made him nervous. He did confirm to me that the labs results he had seen from Teddy suggested autoimmune hepatitis (which I had already figured out on my own) and the biopsy should be able to confirm or rule that out.

The wrap came to our rescue again after the procedure, when I was tasked with keeping him still for 6 hours. HAHAHA. He was miserable with a dry mouth and hunger and just general getting the anesthesia out of his system, and he had to be NPO for 4 hours after (making it about 12 hours NPO). But we did give him some moist mouth swabs, which he LOVED. He was actually gagging himself on his own dry tongue, but he was pretty funny trying to figure out what was wrong with his mouth. 🙂

2013-05-31 10.06.34

The rest of our stay, we just tried to survive.

Leave a comment »