Our Teddy Bear's Journey

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

Today

What an all around pleasant day today is.

Yesterday was a hard day for me. I was already kind of down. They have been decorating for Christmas and that caught me off guard with how upset it made me. (just… reminders of last December.) It’s been a really rough admission. I was forced to come to grips yet again with the reality that Kidney Failure is often fatal for babies. One of our doctors reminded me herself that we’re pretty lucky to even still have him. Yeah. I know.

There was a whole thing with the nutritionist that I’ll discuss later.

I miss my kids. This whole thing sucks. I was just down.

His 12th surgery? TWELVE. Nobody should have to do that. Twelve. Holding him down for IVs and labs and he just screams and screams and looks at me like “why are you letting them do this to me, mama?”

SUCKS. THIS ALL SUCKS. I can’t say more than that. It sucks. I wish there were a word that meant something like “sucky to the extreme.” That’s the word this is, but maybe more so.

So I cried most of the day.

I cried while he was in the OR. I cried in recovery. I cried in his room afterwards. I cried all morning, literally. My friend Shanen came to visit and brought me McD’s and I did not cry while she was here, and then I cried after she left. And then I cried with our nurse. And she was super great and talked to me a little and hung out a bit. And then I cried in front of Dr. Jetton, and she cried a little. It’s just been hard. And that damn wreath. Some online friends checked in with me periodically, which was nice and helped a little, mostly just from a “it’s ok to have a down day, I get it” standpoint. They made me feel less silly for being so weepy.

And then I felt better. Today started with a lab draw that went OK, and then a talk with Dr Jetton and the nutritionist that went as good as I could have hoped (which wasn’t great but that’s ok). Then I had coffee with Jamie, another kidney mom here, which was really nice. We’ve emailed back and forth but not really had a chance to chat in person, and I really like her. (and she reads this blog, so Hi, Jamie.) Just chatting with someone who gets it and who’s been through it.

Today we have our favorite nurse Kelsey, who has neglected to mention their Primary Nurse program thingie, where I can put her down on my “sheet” as being our preferred nurse, so we get her automatically any time we’re in if she’s working. Where was she with THAT tidbit about 4 admissions ago, huh??

Strolled down to the dialysis unit with Jamie to say hi to one of the gals down there (and to avoid going back to our room) and Dr Jetton steps out and says, “hey, would you like to go home today?” Um… sure. So – We’re going HOME!!!  YAY. Hopefully to stay.  Nobody seems as flat-out scared as I am about what the future holds. I’m terrified. I don’t think I’ve been this worried since those first weeks in the NICU.

But we have a plan in place. Weekly labs in Des Moines, coming back here every other week at first. If this No Dialysis thing doesn’t work out, we think about having the transplant surgeon look at him to see if another PD Catheter is a possibility and we give PD another shot. (at our option – Dr Jetton said we could certainly turn this down if we wanted, but we talked about it and it seems like a much better choice than the alternative.)  If PD isn’t a possibility at that point (when he’s hopefully a little bigger and his insides have healed up), then he’ll have to do hemodialysis until transplant.

(and at that point, I’ll start talking to other transplant centers about him, as well.)

I also met Amy, the transplant coordinator, today. She’s going to get the ball rolling. Insurance approval is the first step, then she’ll start setting up appointments with everyone on the transplant team… yikes!

The big sad part about today is that we lose Jen as our nurse. Jen’s been with us since the beginning. We’ve spent literally hours together up in the dialysis unit, in Teddy’s hospital rooms, etc.  Teddy loves her. She loves him. I love her. She is completely OCD, which meshes well with my personality. She checks his Xray and lab reports from home. She cares. And since Teddy is no longer a dialysis patient and has no catheter, we don’t get to keep coming up to the unit. We have to go to Peds Speciality and just have whatever nurse happens to be hanging around that day. stinky. I’m really bummed about this. I didn’t think we’d lose Jen until he got his transplant, and I was already pre-sad about that, to be honest.

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Random Thoughts Plus Teddy has Surgery #12 tomorrow

Peds Surgery Department. You are not my favorite people on a GOOD day. Most of you are very arrogant (the ones who aren’t are not surgeons). Most of you are not yet real doctors who have earned the right to be arrogant. Don’t come in to examine my kid and tell me all about your 11 month old at home and how he just had to have surgery on his hand. Not to sound insensitive, but SHUT UP. I don’t care. I don’t know you. LOOK at my kid. Can you count the scars? I have managed to actually forget what some of them are from. So pardon my utter lack of empathy over your kid and his minor hand surgery.

“How is he doing?” is such a loaded question. I try to remember that people who ask this are genuinely concerned and they care. That’s why they ask. I just know that I have no way to answer that question. I don’t know. I don’t know how he’s doing. I’m not even sure if I should answer that question from a short-term standpoint, or a long-term standpoint. Or a mid-term standpoint? Would the answers be different?

If you walk in our room and notice Teddy is sleeping, you don’t need to ask if this is a good time for his aranesp shot. It’s not.

—-

Surgery #12 bright and early to remove his PD catheter and not be too resentful of everything that’s led us to this point, including all those other catheter surgeries, the dialysis training time, the buying of supplies for dialysis, the rearranging of our house for dialysis, etc.  Instead, focusing on the silver lining – baths in the bathtub. Not looking like a horror show if we go to the pool. Ability to be naked. No dressing changes. Kissing his chest.

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C-Diff

http://camdenmoore.wordpress.com/2012/11/11/the-diff-stands-for-difficult/

 

Yup.

The Diff stands for Difficult and I think the C stands for Cannabis, which is what you’ll need after battling it.

We’re on round 3, I think, or possibly Round 2 The Extended Version. Since we  started IV antibiotics again and I’ve been ordered to stop the probiotics, we’re probably headed into Round 4, or what is really Round 2 The Even More Extended Version. The good news is that he still responds well to Flagyl, and we do seem to be able to beat it back. He regularly tests negative in between bouts of stinky watery diarrhea… some kids end up just always testing positive.

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Today: Nov 12

After Teddy’s little scary escapade,  he went on to appear fine and playful on Sunday. The other kids visited, but Genna was sick so they didn’t stay long. Teddy’s been on monitors since Saturday night, but he appears to be OK.

Sunday, they attempted to do a fill and drain to flush him out a bit and draw more cultures, but after they filled, nothing came out. Nothing. grrr.

The final result from the PD fluid culture on the 9th came today, and it also grew fungus. General consensus is that Saturday night’s little escapade was a result of his body’s response to the infection, and we’re glad we started treating right away because it probably saved us from a lot of problems.

The catheter needs to come out. I’d be upset about this if it were working, but as it is, I think it was probably going to come out anyway, because it wasn’t working.

I’m not sure where that leaves us. I believe the plan is to let his body heal a little, leave it alone, and see what it does. If he can stay stable without dialysis, we’ll go with that.

The thing that makes me nervous is that we need to focus on growing him, but at some point, he’s probably going to outgrow his kidney. It’s been struggling lately to keep up, I think, and eventually, it’s just not going to be able to do it any more. Then what?

Once, Dr. Jetton described what we were doing with Teddy as walking on a tightrope, with that catheter being our safety net. Now we’re going to be walking the tightrope without a safety net. But in reality, we only had the illusion of a safety net. The catheters never worked. Now we’re just removing the illusion… but, in reality, I don’t think we’re treading a more dangerous path than we were before.

And I’m looking forward to seeing my little Teddybear’s naked skin. Too bad it’s 30 degrees out, because if we get discharged sans catheter, this kid could totally go in a lake if he wanted! He can take a bath! A real bath! I can kiss his chest and actually hit skin. No more dressing changes. I’m allowing myself to get happy about this because, frankly, I need something to be happy about.

 

And also, we’re on iso – again – until we get the results of a rotavirus test that I’m not sure who ordered. I’m no doctor, but this kid does not have rotavirus. Wally had rotavirus. Genna’s had rotavirus. Teddy does not have rotavirus.

 

How am I doing?

I’m frustrated.

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oy, what a night

I woke up at 2 with our nurse telling me that she was doing a repeat blood pressure on Teddy because it had been pretty low, and in addition his heart rate was elevated and his temp was pretty low. Turns out, his BPs were in the 50-60/30 range (low!), and his temp was around 35 C (about 95 F). Yikes.

Nephrology was called. Then transport to come put in an IV so we could start some IV antibiotics and a bolus of saline. Because he’s been getting poked so often, it took the transport nurse two pokes and a LOT of looking to get an IV in (and labs drawn). The only result I’ve heard was platelets elevated (they were elevated yesterday in the 500 range, this morning they were in the 1000 range). His BPs continued to be low, but finally got to a decent level around 6.

It’s been a long, exhausting night. After getting to sleep around midnight, I was up at 2, and finally curled up with Teddy on the crib to catch a catnap around 5:30. It’s not quite 8 as I type this and I’m waiting for Transport again, because his IV blew.

I’m also obviously waiting for the doctors to come tell me what’s going on! In the meantime, Teddy could use a lot of prayers.

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Yeast

This morning, we learned that Teddy’s effluent (the PD fluid that comes out) tested positive for yeast.

That’s bad.

It could mean having to pull the new catheter. (and current opinion is that he doesn’t get another one, although there’s a chance that we could seek a second opinion from another surgeon on that matter.) It could mean ruining his peritoneum for dialysis entirely. It could make him very sick.

There’s also a chance it was a contaminated sample, and that’s what we’re hoping for. Would certainly be easier! (Then we’re back to just the stinky, I-must-be-on-my-belly-to-drain catheter.)

So, in the meantime, we just sit and wait. We sent off new cultures this afternoon, and they have three days to grow stuff. So if they start to grow yeast sooner, we’ll know sooner. But if they don’t grow stuff, we won’t know until Sunday.

Fingers crossed!

Also, I believe we’re going to go ahead and get the process started for transplant and do what we can to push him on growth. They’ve upped his intake again (1200 mL) so we’re going to start burning through frozen milk to the tune of 300 mL per day. I’m hoping to still hit my goal of keeping him on breastmilk until 12 months, but am coming to terms with the idea that he is just plain and simply going to need to start the formula after that. I’ll still pump, I want him to get breastmilk at least through 18 months if possible, but I’m becoming OK with a formula/breastmilk mix at this point.

I’m obviously not doing blenderized diet while we’re in the hospital, and I will continue to hold off for at least a few weeks to let that poor battered gut of his get healed up. We’ll give it another try in December.

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Devotional

My daily devotional book when I’m in the hospital is called A Different Dream For My Child. It’s by Jolene Philo, who never really explains the nature of her son’s life-threatening birth defect for which he needed several surgeries. I really really liked the first several entries. I’m into the second section of the book now, and I’m finding it more irritating than helpful.

A lot of the entries are more basic, entry-level kind of stuff. “oh, you’re new, you’re overwhelmed, you’ve never been in a hospital before” type stuff. That’s not me.

I do think it will get better, and I know part of the problem is me. I’m in a bad place in my head right now. I’m back in the NICU in my head. Just under my calm exterior is a deep well of panic. I don’t want to know the answers to “what if,” but yet I obsess about them. Where’s the entry on that feeling? It’s not even discussed (or hasn’t been yet), and yet I know I’m not the only parent with this issue. Actually, a friend directed me to Charles Spurgeon’s devotionals, which aren’t specific to childhood illness at all, but seem at times like they might as well start with “Dear Sarah, I wrote this for you.”

This one, for example. (bolds mine)

Click Here to Read the Evening Devotional

“Behold, I have graven thee upon the palms of my hands.” –Isaiah 49:16

No doubt a part of the wonder which is concentrated in the word “Behold,” is excited by the unbelieving lamentation of the preceding sentence. Zion said, “The Lord hath forsaken me, and my God hath forgotten me.” How amazed the divine mind seems to be at this wicked unbelief! What can be more astounding than the unfounded doubts and fears of God’s favoured people? The Lord’s loving word of rebuke should make us blush; He cries, “How can I have forgotten thee, when I have graven thee upon the palms of my hands? How darest thou doubt my constant remembrance, when the memorial is set upon my very flesh?” O unbelief, how strange a marvel thou art! We know not which most to wonder at, the faithfulness of God or the unbelief of His people. He keeps His promise a thousand times, and yet the next trial makes us doubt Him. He never faileth; He is never a dry well; He is never as a setting sun, a passing meteor, or a melting vapour; and yet we are as continually vexed with anxieties, molested with suspicions, and disturbed with fears, as if our God were the mirage of the desert. “Behold,” is a word intended to excite admiration. Here, indeed, we have a theme for marvelling. Heaven and earth may well be astonished that rebels should obtain so great a nearness to the heart of infinite love as to be written upon the palms of His hands. “I have graven thee.“It does not say, “Thy name.” The name is there, but that is not all: “I have graven thee.” See the fulness of this! I have graven thy person, thine image, thy case, thy circumstances, thy sins, thy temptations, thy weaknesses, thy wants, thy works; I have graven thee, everything about thee, all that concerns thee; I have put thee altogether there. Wilt thou ever say again that thy God hath forsaken thee when He has graven thee upon His own palms?

Now THAT, my friends, is helpful.

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Update

Teddy’s surgery last night didn’t go very well. I’m not feeling super great about things right now.

We’re back to more questions than answers. Back to asking God what the hell He’s thinking. (I’ve been watching The Office and I keep hearing Stanley’s “Have you lost your damn mind?”)

Teddy’s intestines were inflamed and matted around his catheter. They had to take the catheter out, and the surgeon was reluctant to replace it at all. His peritoneum is inflamed, his intestines are inflamed, he is full of adhesions. He called nephrology during the surgery, and nephrology was adamant that he put in a new catheter. He said basically that there’s no place left in his little belly for a catheter. He found a spot to put it, something about close to the skin on the right side where there was a small pocket, but he didn’t hold out much hope it would work, and in his opinion, peritoneal dialysis is no longer an option for Teddy.

Nephrology feels there’s at least a chance it might work, so we’re going to give it a try and see what happens. We’ve done a few passes with not great results, but there’s still a chance. Whether it is doing to work well enough and whether it’s going to actually WORK (as in, remove toxins) is still unknown. Neph also said that some kids’ bodies just don’t like the foreign material in them and their peritoneum gets rigid and unusable. sigh. His body certainly hasn’t liked ANY of the foreign material we’ve ever put in there.
Hemodialysis is clearly an option, but not a great one for a number of reasons (driving to IC three days a week for 3-4 hours of treatment is among those reasons, HD being hard on little bodies is another). The whole team would like to avoid it if at all possible. So if the catheter doesn’t work, I think the first plan B is to try diet/meds and see if we can stabilize him and keep him growing and stable that way. I got the impression this would NOT be what we were doing before, but would look at least somewhat different. And they’re possibly going to be talking to transplant about how quickly we can get that process going (if the catheter doesn’t work). Sigh.
And today, his poop is a very strange dark color and mucousy, so they’re going to test it for blood, so that’s just something else to worry about.
Not to say I told you so or anything, but does anyone remember who here didn’t want to start PD because of the concern about downsides? Oh, no, everyone says, it’ll be totally fine! He’ll grow! He’ll be more stable! You’ll spend less time in Iowa City.
Sigh. No of course nobody could have predicted any of this…
And Miss Genn is so very stressed out. She takes each hospitalization a bit harder than the previous one. I worry that at some point, we’re going to break her for good. Also? She’s growing up and I’m missing it. She can write! She knows her alphabet! She’s experienced whole months of her life that I’ve missed. (And Wally, too, but you don’t change as fast when you’re 8 as you do when you’re 3 and 4.)
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So, can you believe it? We’re in Iowa City again.

Yeah.

2012-11-04 19.29.05

Last weekend (29th), Teddy started getting really stinky C-Diff smelling diarrhea again. I called on Monday, took in a sample on Tuesday (earliest I could get anything at all solid, that’s how bad it was), was told it was negative, then the fax that UIHC received said positive. Dialysis didn’t work at all on Monday night (or was it Tuesday?). We went in for labs on Wednesday and his sodium was too low and a few other things were off, so we did lots of pedialyte on Thursday and went back for more labs and an Xray on Friday. Learned that the phlebotomy and radiology labs at our peds clinic complex are completely worthless. Friday’s labs came back really really late and were bad, so we were told to come in Saturday morning. Dehydration.

(and he never ever appeared dehydrated. he was drooly, he cried tears, his mouth was moist, etc.)

So here we are. We thought we were just going to get some IV fluids and get the electrolytes straightened out and go home.

(One of the nephrologists suggested there’s a chance his kidney is just losing its ability to help regulate sodium, which they expected to happen obviously at some point. Who knows. We knew his kidney would eventually completely give up… I guess I didn’t really ever stop to think about what exactly that would look like.)

Now, today, he’s been on IV fluids for a day now and should be well hydrated. Decided to try doing dialysis again for the first time in several days. And it didn’t work. We got fluid in, but not out. Jen (dialysis nurse) came in with the ultrabag to try to flush it out if it was just fibrin in there… nope.

So, hey, we’re keeping up Teddy’s surgery averages at 1 per month of life, and he’s headed in for #11 tomorrow.

That picture above? That’s Teddy this evening. He honestly looks like he’s just given up. He’s tired but not sleepy. He doesn’t feel great. He’s got a big belly full of fluid. He has rolled over and given up. Which is what I want to do.

And I like to think that I’ve been pretty flexible, go-with-the-flow with most of this stuff. But this is ridiculous. It’s the other surgeon tomorrow, so I’m going to give him a chance, but I am very literally at the point of seeking out other options if this happens again. I’m not doing another catheter surgery here. I would rather try my luck at Amplatz in Minneapolis or the hospital in KC. I have no idea how that would work, with using a surgeon that far away but still wanting to keep his nephrology care here, but I’m sure we could figure it out.

Posted this on Facebook: I really want them to walk in and say, “hey, we ran some new tests, and we totally can’t explain it, but his tiny undeveloped right kidney spontaneously grew, so who cares that the left kidney is slowly winking out, he’s got an amazing right one that’s going to take over and everything will go back to normal. Yay! Enjoy your suddenly much easier, more carefree life and don’t forget to put us on your Christmas card list.”

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Teddy’s First Blends

I started Teddy’s blenderized diet yesterday. Exciting.

First, I couldn’t do this without our new Blendtec, which I was able to get through their program to help out kids with health needs. Awesome, awesome. The Blendtec is really really really extremely much better than a regular blender. Wow. Yesterday, I threw whole raw carrots into a smoothie – a full cup of them – and there were zero chunks in our finished product.

So… Teddy’s blend. I’m trying to replicate 2 scoops of PM 60/40. 81 calories, 2 g protein, 4.5 g fat, 8.3 g carbs.

I have a worksheet developed by an awesome fellow Kidney Mama that’s got a nice calculator chart on one sheet, and an awesome list of foods with their basic nutrient info on another sheet. I’ve added to it the foods that I’m likely to use with Teddy, and also added a lot of lines for small small quantities (about 1 T each). Many people make larger quantity blends, so having ingredients listed by the cup or pint makes sense, but I’m not quite ready for that step yet.

So he gets the protein he needs from his 2 scoops of beneprotein. Into the blender, I added 1 t coconut oil, 1T fresh sugar snap pea puree, 2 T steel cut oats (cooked), a 1 T fresh cauliflower puree. Approx. 93 calories, 5.25 g fat, 7.5 g carbs, 1.6 g protein.  (and 8 g salt, 59.2 g potassium, 1.3 fiber)   I’m not sure how to raise the carbs further, but I’m also not sure that I really need to.

I made the blend as thick as I could while still getting it smooth and blended, then thinned it out with breastmilk. I tried just syringing this in through his tube, but as with most bolus feeds, he puked it back out. I really wish he could tolerate bolus feeds… I’ll admit, I’m not sure how to work on this with him.

So, I thinned it down further and we just put it in through the pump.

🙂 Success!

And, no picture. The blend looks about like what you’d expect oatmeal, peas, and cauliflower to look like all blended up.

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