Hospital Bag

So, I keep my suitcase packed at all times. At all times. When we get discharged, I unpack the clothes and wash them all, I replace the groceries, rotate the book if needed, change out anything else, pack it all back up, and put it back in the car. I’ve driven that suitcase around since December 26 last year (3 days after NICU discharge). And I’ve never regretted it and I’ve been glad to have it on several occasions.

Stuff

Scissors, stamps, envelopes, the Madison video (in case I decide I need more physical exercise), my devotional book all in the mesh pocket there.

To the right (top) of the case, I have a bag with my clothes (3 shirts, 2 underwear, 2 socks, 1 pants, PJs, camisole) and a bag with Teddy’s stuff (bath soap, diaper rash cream, and an empty space for clothes that I pack last minute on each trip to IA City). That green tote is my toiletries.

The middle of the suitcase is odd bits and pieces. Feminine needs, some toys, Teddy’s teddybear from the ambulance, odds and ends.

And, as you can see, the bottom of the suitcase is my groceries. Including some treats! And a giant Pyrex cup that is indispensable.

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Features

Yes, it’s time for a Features update on Mr. Teddy. Mr. Teddy who was NAKED yesterday. As a Jaybird. And I kept him naked most of the day. Because I could.

Features
So this is his torso.

Features
This is a closeup

Features
This is his back. The scars there are from his nephrostomy when he was 7 or 8 days old.

Features
He was a little wiggly here, but I wanted to photograph his needle tracks. He’s been hitting the horse a little heavy lately, lol. Poor kid was literally running out of places to get labs during this stay.

Planning

I’m a planner. I can roll with the punches, but I roll better when I’ve thought about whatever situation we’re facing ahead of time. That’s why I had 5 birth plans for Teddy.

Since his birth, Teddy’s been making it hard to have plans. It’s hard to think about how we’ll handle what we might face in the future when I have NO IDEA what we’re going to face in the future. Teddy’s not following a predictable path.

Regardless, it’s becoming apparent that I need to be able to think of what we’ll do in a few potentially upcoming situations. First, what will we do if Teddy needs hemodialysis? Second, what are we going to do when Teddy gets his transplant?

And I’ve put off thinking about both of these things, because the answers are all that I don’t know. I just don’t know. I can’t realistically leave the kids with someone else 3 days a week. I just can’t. Equally unrealistic is bringing them here. Where tha leaves us (and school) is somewhat of a mystery. Do we find a nanny who lives in Iowa City? She meets us at the hospital, take the kids for the time Teddy’s on dialysis, and brings them back when we’re done? We can do school in the car and on home days? Do I have that kind of energy? Do we have that kind of money?

Do we find an apartment in Iowa City? Live at the Ronald McDonald house? Either option allows us to avoid so much driving but means we don’t see daddy and I’m a single mom of 3. Not ideal.

 

And transplant? I don’t know. Kids here in Iowa City? Kids home? Who is responsible for the kids?

 

Where is my Aunt Bea?? (of Mayberry fame)

 

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.

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.

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.

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.