Music has charms to soothe the savage breast

(yes, it’s breast. not beast. I’m sorry that people have such issues with the word “breast.”)

A few weeks ago, when I was still trying to adjust (again) to the idea of starting dialysis, Wally and Genna started watching a lot of Veggie Tales on Netflix. And then I would put the songs on for them in the car. (Um, remember napster? I was having a love affair with Veggie Tales when Napster was still around and Napstered most of the songs that were out at that time. Well before I had kids.)

God is Bigger Than the Boogieman

God is bigger than the boogie man
He’s bigger than Godzilla, or the monsters on TV
Oh, God is bigger than the boogie man
And He’s watching out for you and me.

Monster #1: So, are you frightened?
Junior: No, not really.
Monster #2: Are you worried?
Junior: Not a bit.
I know what ever’s gonna happen,
That God can handle it.

Wow. Yup, it was a nice reminder. And while it sounds strange to say that a children’s song helped me feel better about the whole thing and reminded me of who is really in charge here… well, it did. God can certainly use children’s TV and songs to teach me a little lesson. 🙂

PS, if I step back from myself, I find it interesting that I’ve developed such a dislike/fear of dialysis. It’s a well-established fact that I am change-averse… and I guess all this time we didn’t start dialysis, I just got used to it. I like our routine. I think I finally feel like we might have finally started to get our groove back. And now it’s going to be disrupted again and we’re going to be with a new, markedly less flexible routine.  And it’s unknown, and the unknown is scary. Except it’s not unknown, I had to drive across town to help my mom hook and unhook and all that fun stuff several times a week. At least this will be more convenient because he lives with me, lol.

Advertisements

Clinic Visits the last few weeks, and a ped visit, and life.

Last week and this week were mostly the same. BUN is elevated (but stayed stable this week, and didn’t continue going up). I was not surprised that his BUN was up, because I’ve felt that he was a little dehydrated, but I was surprised it didn’t come back down. Then again, he might be vomiting more than I think. He’s better during the day (I think), but wakes up several times at night to vomit. They’re all small vomits, but they probably add up more than I think. They increased his intake to 1110 mL last week and we are still finding our groove with that quantity.

His sodium is down, which could mean that his little kidney that could is slowly turning into the little kidney that just couldn’t. Poor little kidney, it’s worked so hard for 9 months now… So he has a new prescription (I think that makes 9 meds again, though I’d have to go count) for sodium somethingoranother that’s slipping my mind. He was on it at discharge from the NICU, but was able to stop it for a while. At least now he has the tube, right?

We are still planning to replace the catheter and start dialysis at some point. I think he’s over the C-Diff, so that point is coming up sooner rather than later. It’s been a nice few weeks of pretending we don’t still have that looming over our heads. Part of me was hoping that they would have changed their minds, but I think with the recent jump in BUN and the sodium thing… even I am not sure I want him without a catheter.

Teddy has tried solid foods and had no interest. At first, he would accept food in his mouth but gag and vomit when it reached his throat. Now he vomits when I put it on his lips. So we’re done with that for a while. I can’t afford that much more vomiting, and honestly, him eating food with his mouth like a regular human is not my highest priority. Would it be nice? Sure. But whatever. Maybe I’m just tired, but I guess I see that as more of a long-term, after-the-new-kidney goal.

I’m researching blenderized diets in an effort to continue keeping him off of canned formula and eating real, whole foods like a regular human would… just liquidy and through his tube. Need to talk to the nutritionist about this plan, I’m not sure how on board she will be, but we’ll see. I can be a pretty determined son of a gun when I need to be. 🙂

Let’s see…

Pediatrician says Teddy is actually developmentally delayed now… he’s far enough behind, she wants an eval by the Early Access people. So I have a phone call in to them, but haven’t heard back. She would ideally like him to get some physical therapy and maybe speech, too (to help with the oral issues). I’m interested to see what they say. She said that she thinks he *can* sit, he just doesn’t really want to, and she likened it to the Terrible Twos. Um, except he’s 9 months. And while I think it’s clear that Teddy has a mind of his own, I also just don’t think that a 9 month old is capable of anything resembling “terrible two’s,” which I don’t even believe in anyway. (Self-fulfulling prophesy, much? Twos are just misunderstood.) So I really like our Ped, and I’m choosing to believe I just misunderstood what she meant by all that.

Also, we’re not as bad off on Teddy’s vaccines as his medical records want to make it sound. True… he’s not as vaccinated as your typical child. But while I was pumping last night at 2:30, I did some plotting, using the CDC’s list of recommended vaccines and spacing intervals. Here is what he has left of the “infant” vaccines (I left chicken pox off this list… I have every intention of him getting natural chicken pox immunity, which I think will serve him better in the long run.)

3rd hep b 16 weeks (11/22) then done.

3rd dtap in 6 mo. (feb)
4th dtap in 6mo (aug 2013)
then done until age 4

3rd HIB 2 months (oct)
4th hib 6-9 mo (apr 2013)
then done

2nd Ipv in 2 months (Sept, hopefully)
3rd ipv in 2 months (Nov, hopefully)
Then done until age 4

2nd Pcb 8 weeks (Sept, hopefully)
3rd pcb 8 weeks (Nov, hopefully)
4th pcb 6 months (May 2013)

1st mmr feb 2013  (10 months after last IVIG)
2nd mmr age 4

1st hep a 12-23 months (probably Feb)
2nd in 6 months (prob Aug)

 

So… two in September, three more in November/December. Then a few scattered about in 2013, with the last one August 2013. So we are not doing bad. Just have to keep him infection-free, so we can stay on track.

 

In other news, my birthday was last week and I treated myself to the luxury of writing Dr. Mandsager a letter explaining to him why I will drive to Iowa City for any future perinatology needs I might have. I thought he deserved to know. The jerk. I’m not going to mail it until they’ve sent me my records, though.

The awesome news

I can’t believe I forgot to mention this here.

For some reason, after we got Teddy’s blood type (o Pos), I knew it was the same as Randy’s, but I remembered that my blood type was different from Randy’s. After months of remembering I wanted to check my records from my midwife only when I was in the car, or only when I was in bed, or in the hospital… I finally remembered when I was home, awake, and had a minute to run downstairs to the office.

Guess what? I am O Pos as well.

Yay!!

That means that I could also be a candidate to give Teddy a kidney, assuming that a history of kidney stones (2 total, with a 3rd one in there), the MTHFR, or the ITP during my late teen years don’t rule me out. (or, you know, any of the hundred of other things they screen for.) I think the kidney stones are likely to knock me out of the running, but I’m going to ask.

And even though I know it’s still a ways in the future, I’m going to see if I can’t find out sooner rather than later. If I’m definitely not going to be allowed to donate because of the stones, I’d like to know.

And then while trying to read about what sorts of things typically rule you out as a kidney donor, I came across information that sleep apnea rules you out. Awesome. Because Randy has the worst sleep apnea that our sleep clinic had ever seen. (really.) He’s religious about his CPAP, though, so maybe? I don’t know.

But I’d like to find out sooner rather than later, like I said, because I don’t want to spend the next year thinking that one of us can donate only to find out that neither of us were ever a realistic candidate. I know that even if we were both perfect candidates from the outside, we could still be a poor match or have freakishly arranged innards or whatever (don’t laugh – my dad’s liver cancer was inoperable because his liver was misshapen) and be unable to donate, after all… but if it’s cut-and-dried, no you can’t donate, for both of us… I just want some time to adjust to that. It will be easier to know that now when we’re far away from transplant than to find out when we’re closer.

(it also gives me time to write the most awkward letter I might ever write, but totally will write if I need to. “Dear birthmother. How have you been for the last 35 years? By the way, my son needs a kidney and I’d consider it a huge personal favor if you’d consider a – telling your husband that you had a baby when you were a teenager and placed her for adoption and then b – getting tested to see if you might be a good match. Because, you know, giving me life and not having me aborted were not enough, now I’m coming after your kidney, too.”)

Homeschooling

school

We are a homeschooling family. We always have planned to homeschool, since before we had kids. I don’t really even remember it being a topic of conversation, oddly.

Wally is in 3rd grade this year and Genna is in preschool. She will probably do either 2 years of preschool or 2 years of kindy. Not only is she a fall birthday (vs Wally’s spring birthday), but she’s also much younger than he was at this age, if that makes sense. Wally was born old (like I was – I’ve been a grandma my whole life). Genna is much more age-typical.

We had planned to start at the beginning of August, and then when the plan developed to start dialysis, we put it off. That involves about two weeks away from home, and would have left us with 1 week of school, then 2 weeks off. Then we would have had to pretty much repeat that 1 week again so there didn’t seem to be much point.

Then I started stressing about getting in all of our days. It’s unrealistic to plan a school year without a lot of cushion for missed weeks for Teddy to be in the hospital. And, right now, we can only do school 4 days a week, because Wednesday is spent driving back and forth to Iowa City. Though I’m told that’ll decrease to monthly, the most recent time that was mentioned, the word “eventually” was used, and so I’m just not planning my school year around a 5 day a week schedule. (Um, besides, I’ve already done our planning, and I did it before the dialysis plan, when the plan was still to go in every week or two, and I”m not redoing our planning.)

So as of Sunday, when the plan was to be in IC for 2 weeks and then home, I was going to give myself a week to adjust at home and then start school in September and we were going to say that we were being old-school and waiting until after Labor Day and bucking the trend of starting early and starting our own new trend. And then I started counting, and if we only took 1 week off for Christmas, and no other breaks, we’d finish mid or late May. Um… not much cushion there. (I like to finish up before our Okoboji week the first full week in June.)

And now, since we’re home for 10 days on antibiotics and then we’ll see what happens from there… I can’t put it off. We’re going to have to get started and then just miss 2 weeks and hope we don’t lose too much of the new information. I haven’t looked to see for sure, but if we get in three weeks of school before the break, we’ll break right in the middle of a few two-week units which is less than ideal, but I’m not sure what else to do. We HAVE to get started.

So… we actually are starting today, as soon as I get done pumping. My plan has been to wake up early on our first day and make a fun, fancy breakfast and start school by 8 (which is our regular school day schedule – breakfast 7:30, school 8). But… well, I am tired and slept until 6:30, we have no groceries in the house since we were planning to be gone for 2 weeks, and Wally was tired after a late night of driving to and from iowa city to get me (of course, he didn’t drive) and slept until 8. By the time he got all awake (he’s a slow waker) and breakfasted (leftover pizza), it was time to pump. So we’ll start at 10. sigh.

I think God is trying to teach me to go with the flow. I am trying.

I blog regularly about homeschooling topics at The Family School. It’s sort of like this blog, but for school – it’s a combination of weekly reporting on what we’re learning about plus philosophical posts, how-to posts, and miscellaneous other things.

Monday, or There and Back Again,

So….

After we were admitted on Sunday, I noticed Teddy’s poop appeared to have blood in it. And it was really snotty looking. So they decide to test for C-Diff. Monday morning at 3 while I was up pumping, the nurse came in and said that a while back, the test result had come back positive, and so she had let the Surgery Resident know already and we were waiting to hear back if they were going to proceed with the surgery. We didn’t hear.

At 7, all of a sudden, the transport person was there to take us down to pre-op. Ok. So I guess we’re going. I was in the middle of pumping and hadn’t eaten or changed my clothes. (They usually call first.)

At 7:20 ish, a nurse walks in and tells the nurse who’s taking our medical history information that his surgery is cancelled and that mom already knew that.

What? Realizing that I still had leftover grumpiness from the previous day and that I was also tired and still wearing pajamas, I didn’t really say much other than “um… no. No I did not know.” But really? REALLY? How big of an idiot do I look like? If I knew his surgery was cancelled, would I really have walked all the way up there with him and not said anything to anybody?? (note, I know some people would have, and the nurses have no way to tell that I’m not, in fact, an idiot. Have considered getting a tattoo on my forehead, though. “Not an Idiot.”)

So they said they’d send someone from surgery in to talk to me. And my hungry baby who hadn’t eaten anything since midnight. (In reality, he could have cared less. He doesn’t ever seem to get hungry any more. But he SHOULD have been hungry, and skipping that much food just means that I had that much more of a task ahead of me to get him all of his food that day.) A half hour later, I texted Randy and told him they had 10 minutes before I put him back in the little bed and pushed him back down to our room myself. I’m certain the surgery people aren’t crippled and can clearly walk up to our room and find us. 10 minutes later – to the minute – in walks a surgery resident.

Who sat there and told me that NOBODY had told surgery until 7 or so that morning. I told him I found that hard to believe when I was up at 3, and our nurse told me at that time that she had already called and spoken to the peds surgery resident. He said that would have been him. So I said, ok, then, she called and told you before 3 am. He never admitted that he had just told me a bald-faced lie, but he didn’t return to his 7 am story, either. I really laid into him, but in a polite way. I asked him if he thought that this was providing good care. That sitting around and not making a decision for 4 hours was a good standard of care? If withholding food from an infant with kidney failure for 8 hours for no reason was a good thing? If he’d like it if somebody did that to him. I didn’t disagree with the decision (I was surprised we were going), but I thought it was handled really poorly. I would have probably accepted it had he come in and said anything OTHER THAN “but nobody told me.” Liar. I hate being lied to. Found out later, he HAD gotten the call and had decided that it wasn’t worth calling the surgeon to ask, so he waited to find out until the surgeon came in. And maybe that was the right call – I mean, I’d prefer the surgeons be well-rested. But then just say that. Don’t sit there and lie to me. He kept saying “well, what’s done is done” and while that’s true, it’s also not an acceptable way to handle explaining your decision making process to an irate parent.

NEWS FLASH, Medical Personnel: Just tell us the truth. Don’t lie to cover your butt. You just end up looking like a jerk and then I don’t believe anything you say after that.

So we went back to our room, someone gave me permission to feed him (which made me laugh, because I was pretty much going to do it anyway), and then he slept for the next 2 hours while I held him, still did not get breakfast, and didn’t change my clothes.

Several hours of sitting around later, we were discharged at 3, discovered that the RMDH sent the shuttle for me at 2:30 despite the nurse telling them I wouldn’t be ready until 3, waited 40 minutes for the shuttle to come back, packed up our things, decided to vacuum the RMDH even though that wasn’t even our assigned task for the day just because we had some free time, took over an hour doing that and then cleaning the vacuum because I had noticed it wasn’t doing a great job of actually vacuuming, and THEN – THEN – at 8:30 when Randy finally was able to come get me, the little tart running the desk (aka chatting with her friend who was eating food from the kitchen) checked our room and told me I needed to go vacuum. I said I already did. “Well, it looks like you just need to run the vacuum over it one more time.” “Maybe you need to get your vacuum repaired. I vacuumed the whole house including my room and noticed that the Check Roller light was on, even though I tried to clean out the roller.” “mm. Well, go vacuum one more time.”

Decided if she was going to treat me like I was 12, I could absolutely live up to that expectation. Took the vacuum (and Teddy, and his feeding pump, and his diaper bag) back to our room, plugged in the vacuum, turned it on, and then sat down at the desk and filled out the guest satisfaction survey where I suggested they ought to consider having their vacuum repaired or replaced before giving their 20 year old volunteers the authority to criticize the cleaning skills of their adult guests who might have been vacuuming for twice as long as the volunteers have even been alive. I realize I don’t vacuum at home (hardwood floors, I just sweep and mop) but I grew up with carpet and I know how to vacuum.

I’d like to say I’m not normally such a snot, but… I am. I had been trying to see our whole hospital experience in a positive light all afternoon, and doing something good for the residents at the House made me feel good and then Miss Tart had to crap all over that. Chances of me feeling like I want to complete a bunch of unassigned cleaning tasks at the House in the future? SLIM. I’ve got socks that need to be knit, I don’t need to be vacuuming the halls of the RMDH if it goes completely unappreciated.

So… we loaded everything back up in the car and drove it home, paid for 4 nights at the RMD House that we didn’t use, and I guess we’ll start all over in a few weeks.

The plan is, antibiotics for 10 days for the C-Diff (on top of the 2 he was already on), then retest his poop and reschedule the surgery. I am waiting to hear if we can push it back to September, since we won’t have our child care that last week in September.

 

(Also, to add to my list of complaining in the last post – in the morning after The Surgery That Wasn’t, our nurse was getting his meds ready and they always send one up in a bottle instead of a syringe because it’s light sensitive and then the nurse draws it up, and she says, “Oh, they didn’t send enough of this” and I asked what it was. “Calcitriol.” “Well, how much did they send?” “It says the dose is 1.5 and they only sent .5” “No, it’s only .5” “It says on the computer 1.5” “Well, call someone and find out because I’m not going to give him 3 times the dose unless someone from nephrology confirms that’s what they want.”  Turns out, she was looking at the wrong thing. mmm hmmm. This is why I look at each and every syringe they bring for him, and usually give them to him myself.)

I am tired and I hate this place

Normally, I love our hospital. I mean, it’s not my preference to be here, but if we need to be here, it’s a nice place. I like the nurses (mostly), we’ve not had any of the bad experiences I read about online with other kidney mamas. They rarely really mess things up, and I’ve found the nurses to generally be flexible with meds and vitals and whatnot. I really genuinely like everyone on our nephrology team, which is a real blessing. The doctors here on the floor GENERALLY speaking have not had ego issues with not being in charge of his care, as I’ve read other parents struggling with.

So, usually happy.

But I am so sick of being here. One of the nurses we passed today said “oh, he’s getting so big!” and I”m like, for the love of all things holy, you just saw him less than a month ago. And, bloody hell people, tomorrow is his NINTH surgery. NINE!! He’s averaging just over 1/month. That’s too many.

And this trip, maybe I’m just grumpy. I know I’m tired. 8 plus months of sleep depravation are starting to catch up to me. Just over a year ago, we first learned about his kidney issue and it’s been a lot of stress since then – that’s got to be wearing down my reserves. But everyone seems hell-bent on pissing me off this afternoon/evening.

Because I know all of my 3.4 readers want to listen to me bitch…

– The nurse who accessed his port MISSED. She missed the port. MISSED IT. Dude, it’s a huge knob that sticks out of his chest. It’s practically got a target painted on it. You can still see at least two old needle marks kind of showing you approx where the needle should go. How do you miss it?? What the hell? This AFTER she putzed around for about 20 minutes while the other nurse was holding him down, and I keep asking if they’re not quite ready to start, should I just hold him, because I know he’s got a timer. He’s patient about lying down for about 10 minutes, and then after that, show’s over. If you let that 10 minutes run out before you’ve done anything, you’re in for some trouble.

– Junior residents. What purpose do they serve? Ok, I know, they need to learn, too. But seriously. I am more of a doctor than these people. I was more of a doctor than they were even before all this with Teddy.

– So his eye is pink. Suddenly Miss Teen Iowa… errr… the junior resident… is convinced it’s pinkeye. He’s had this before and it always turns out to be that tear duct. Every time I think “oh my god, it’s PINKEYE!!” then the next day, it’s crusty and swollen and not pinkeye. But she glances at it and, evidently based on no evidence other than its color, says “looks like pinkeye.”

– He’s got bloody, mucousy poop. That’s not Doctor Barbie’s fault, but I’m going to blame it on her, anyway. They’re doing CDiff cultures, which is good, but which will probably prevent him from ever pooping again. (Last time he had diarrhea from the antibiotics, they decided to do Cdiff cultures, and then he stopped pooping entirely, but he was on isolation until they could do a culture. It was funny and maddening all at the same time but I’m not in as good of a mood this time.)

– He is supposed to be here just for the night. My (small) suitcase has in it food and clothes for one night. If they don’t let us out of here tomorrow because of any of the above, I’m going to be in some trouble. Not to mention, the ONLY skirt I have with me has not only been vomited on, but had root beer spilled literally ALL OVER the front of it at lunch, and then also a fair amout of breastmilk leaked onto it from pumping. I thought I could just wear my pajama bottoms if I needed to, until Teddy vomited INTO MY CROTCH. Yes, it looks like I peed my pants. Thanks, kid. I’m sure this is also the junior resident’s fault somehow.

– So we’re changing his GERD medicine from Prevacid to Pepcid and twice a day. I don’t know why. I am against this change. Prevacid’s been working. He hasn’t had a gagging/retching/crying/arching/chest grabbing dramatic thing for a while now. He still vomits, but it’s just puking, not heart-wrenching drama. And suddenly we’re changing things. I mean, heck, why not, right? It’s not as if having another surgery and then starting dialysis is going to be kind of wearying on his little body or anything, let’s throw another monkey wrench into the whole deal, eh?

– Night nurse filled his feeding pump bag partway (and they never use an ice pack, they just let it hang out a room temp and that always bugs me) and then set the half full bottle down on the counter and then left. HELLO! I work hard for that milk, dear. You may NOT waste it like that.

– With the blood in the poop thing, they keep asking about his diet and if it’s changed. Jr Barbie Resident asked if his “formula” had changed. Now, I know that “formula” is simply a mixture… but he’s not on FORMULA. He’s on BREASTMILK. And yes, it has changed. It changes every day. It changes every hour (not so much for him, since I mix together the milk from an entire day of pumping into one big jar). That’s the nature of breastmilk and if you could please not insult me by calling it formula that would be great. It’s all the same to you only because you’ve never pumped 12 times a day.

harumph. And I missed most of the closing ceremonies talking to stupid doctors and nurses.