Pediatrician Visit

Monday found us back at the pediatrician’s office.

– NOBODY has a record of his getting the HIB shot. But he did, I have it written down. I wrote down the date, and based on where we were on that date, he got it at UI. But it’s not in their records, and it’s not in the ped’s records, so it’s like it didn’t exist. I’m SO PISSED about that. However, because of the date, it was 2 weeks after he got an IVIG infusion (his first) and so doesn’t count anyway. (I didn’t think to ask about vaccines and IVIG until his second infusion.)

– Ped told me that NOBODY is really ok with me doing the shots the way we are (one at a time) and kind of scolded me for him being 5 months and only received 3 shots total. But MY plan was one shot every other week – it is NOT my fault that he has had surgery after surgery, and the line infection, and the IVIGs. I explained to her politely (because I do like her) that I thought everyone should be thanking me for consenting to this at ALL and I didn’t think I needed hassle for doing it in a way I was comfortable with.

– She is happy with his development. She said she didn’t want to say that he was “delayed” the last time she saw him, but… This kind of bugged me. You’re not doing anyone any favors by not calling a spade a spade. If he is delayed, say it. She is pleased with how he is doing, but she was comparing him to where you’re supposed to be at 4 months, as opposed to almost 6 months. She did note that he is really behind in trunk and head control, but his alertness, use of his hands, grasping things, etc. are right on.

– He got another vaccine (#3). I actually should have declined for this visit, but caved to the pressure (from everyone, not just the ped). With Genna’s chicken pox, the nephrologist is wanting to treat Teddy with an antiviral at the first sign of illness (like fever), but fever is also a side effect of vaccines. He did in fact get a fever, and then we had to worry about whether it was the shot, or the pox.

– She encouraged starting solids so that he continues to work on his oral skills, but I think he’s doing fine. He takes his bottles readily and his bolus feeds are usually pretty small.

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Medical Research

So, you’re faced with a medical decision. Or situation. Or whatever. And you want to learn more about it, independently from your doctor. (Why would you want to do this? See related article about Informed Consent over here at Wallypop.)

I’m surprised to learn how many people don’t know where to start with this. Here’s what I do:

1) Ask around. I don’t mean ask your friends, unless your friends have also dealt with whatever it is you’re looking into. I currently belong to a FB group for Kidney Mamas, and if the question is kidney related, I often ask there first. The mamas there will at least have a range of experiences to share, and since they’re from around the country and see different doctors, their doctors will have had different opinions and protocols, as well.  This is where message boards like Mothering.com come in handy, or even just a Google search will usually bring up message board posts for lots of personal experience sharing. (It also brings up a lot of BS from people offering their opinions when they have no business offering opinions. You need to mentally filter out any personal information sharing that is poorly written, that doesn’t use appropriate medical terminology, or that is not based on actual personal experience.)

In my opinion, nothing beats real life experience. Our nephrologist recommended a Gtube for Teddy a few months ago, and I was really on the fence. I understood what she was saying, and I believed her, just… I wanted more information. I’d already been doing reading about appropriate growth in infants with CKF and knew that most end up with a feeding tube, so her suggestion wasn’t a surprise, but even so… I was uncertain. That’s where my fellow kidney mamas came in. I think three people said something to the effect that they’d put it off, but once they got it, they wished they’d done it sooner. That cemented it for me.

That said, one person’s experience does not a rule make. For example, I got ITP (an autoimmune dysfunction related to platelets) from the MMR vaccine – most people do not. So you can take into consideration my experience, but you should know enough to know that it’s the exception, not the rule. How do you find that out?

2) References from the people whose personal experiences you learned from above. You can Google all day, but a few links from the bookmarks folder of someone who’s been where you are now can save you a lot of time. If there’s some sort of online group for whatever you’re researching, start there. (whether it’s an informal group like a Facebook group, or something like the National Kidney Foundation.)

3) General medical websites. WebMD, Mayoclinic.com, even the NIH. Lots of hospitals have very informative articles posted on their websites. You can Google to find them, or start at WebMD.com (or whatever) and use the search function. These websites will usually be biased towards medical solutions, but are still a great source of accurate information.

4) Scholarly publications. I usually turn to scholarly publications when I’m not getting anywhere with the general websites (like when they all say that hydronephrosis is usually mild and not concerning), or when I think I’ve got an argument on my hands. If I’m wanting to do something that a doctor doesn’t want to do, or I don’t want to do what they want, I want to make sure that A) research is on my side and B) I can clearly argue my case. This is where scholarly publications come into play. PubMed is a decent place to start. Google’s Scholarly search: http://scholar.google.com

Scholarly publications, research articles, etc., are only going to help you if you know how to read them. I can’t help you there. I’ve been reading medical research since I can remember and the jargon is part of me.

5) Professional organizations. ACOG (American College of Ob and Gyn), for example, has publicly-available position papers, and you can access some of their members-only position papers through other organizations. Nothing compares to presenting an OB with a position statement from their own professional organization when you’re arguing about something with them. Many of your doctors’ professional organizations have portions of their websites available to the public.

 

To go along with all of the above:

6) Your medical records. Get them. Read them. Google every single word you don’t know. Staring with a thorough understanding of what your file says is the BEST place to start. Because doctors don’t tell you everything.

First Bath Ever

With Teddy’s PD Catheter now being so high up on his chest, he can take a bath like a real boy. So this week, he had his first bath. Looking at the picture, I should have put more water in the tub, but I wasn’t real sure where the water line would end up, and it has to stay lower than his line.

But, anyway. He hated it. HATED it.

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Kidney Walk

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Teddy wore his I Heart Nephrologists Onesie.

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Part of Team Teddybear

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So the walk was around the parking lot behind West Glen. Ummm… hm.

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Here’s our whole team. Was supposed to be a bit bigger, but a few people had to back out at the last minute. Next year, we’re hoping for a bigger and better Team Teddybear, and it would be nice to have some family come, too…

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Teddy on the walk

Update

Well, Wednesday was supposed to be an early/over with clinic appointment, and then a long four hours of NPO (no food) for Teddy before his sedated hearing test.

It started with the Clinic (we were at Peds Speciality instead of just going to the dialysis unit) not knowing what to do with us. Sent us to labs at Phlebotomy, but phlebotomy doesn’t draw from ports, the nurses do. Then they kept insisting we had an appt with Peds Surgery. We did not. “To change his button!” “um, did that last week.” “well, we’ll check with Josh.” “Ok, you do that. He’ll tell you we did it LAST WEEK!!” argh. No, I didn’t say that all snotty like it reads. It’s not their fault, so I just said Alright.

Then his port wouldn’t draw. Sigh. After trying for a while, we did TPA for a half hour (it’s a clot buster) and then it worked ok, but still not great. Then labs took FOREVER to get back. Like, we finally got them drawn at 11, and they were not back yet when I had to get over to Otolaryngology at 1.

We also did a dressing change – his site has had this crusty brown stuff, and I wanted our dialysis nurse to look at it. It’s evidently OK, though it looks like he might have some sort of skin-level infection going on, since his Gtube site is pretty red now, too.

Checked in at Oto. The first thing they do before starting the sedation is a physical check of the ear canal. Clear out any wax, make sure there’s no fluid. As it turns out, despite my best efforts and the efforts of our Chiro to the contrary, Teddy has some fluid in his left ear. They don’t like to do the test if a baby has fluid, because if they’re going to go to the trouble/risk of sedating them, they want to make sure to get the best results possible, instead of getting results and then having to go around saying “well, it’s hard to tell if that’s just from the fluid….”

So, the resident was pretty sure there was fluid, but he called in the audiologist to double check. Yes, fluid. Also, they pulled out approx 3 lbs of earwax.

Then they all stood around talking to me and I completely interrupted and said, “so, to cut to the chase. We’re not doing the test today because of the fluid?” yes. OK, then HOLD ON while I get him some FOOD for crying out loud.

They seemed to want to talk me to death about why we weren’t doing the test, but I get it.

So we rescheduled for July (the first available – yikes). They said if he still has fluid at that appt, then they’ll want to talk about tubes. Oy. I’m less than enthusiastic about this option.

Then labs finally came back and looked good. Good enough that Dr. Jetton is having Teddy go to our local ped on Monday for labs and then maybe not have to go to Iowa City next week at all!

Also? Genna has Chicken Pox. Suddenly realized this Friday afternoon. Nephrologists are in a tizzy over that, after talking with Infectious Diseases (aka OverReaction Central), who wants to treat Teddy even if he remains asymptomatic. However, from what I’ve read, he’s highly unlikely to catch it from her, since he still has his immunity that he got from me. I think we’re OK, but if he does get it, they’ll definitely want to treat with an antiviral, which is on the list of drugs you should never ever take if you are trying to avoid dialysis. Stinky.

So… lots of prayers that he doesn’t get the chicken pox!!

Clinic Days

Clinic days just wipe me out. They technically start Tuesday afternoon or evening, when I start packing everything up. Breast pump. Frozen milk (just in case). Milk for the day. Laptop and cell phone charger, just in case. Vitamins and supplements for me. Meds for Teddy. Snacks and drinks for the car. Pack up the diaper bag. Make the decision on how confident I feel about coming home, so I know whether to pack cloth or disposable diapers. Double check EMLA and tegaderm in diaper bag, make sure I have at least one Gtube extension and empty syringe. Pack the kids backpacks with activities, books, snacks, and a change of clothes.

In the morning, I get up early and pump, then get myself dressed, load up the car, then do my morning Teddy routine. Wash bottles from the previous day, administer meds, wash all syringes from past 24 hours. I skip the next two steps in my usual daily routine – drawing up meds for next 24 hours, and measuring out bottles for next 24 hours – just in case we don’t come home. Then blood pressure check, diaper change, get him dressed. At some point, his feeding pump signals that it’s empty and we turn that off and unhook him, though on days I have to leave before 7, it’s not finished yet and I have to do this step in the car on the way out.

Get the kids up, dressed, fed. Pump again. Load kids in car, drop kids off, get on road. Pump on the road. Get to Iowa City, preferably about an hour before our appointment. Gives me time to park, neaten the car, finish up any Teddy-related tasks, feed him, get him in the carrier, grab the diaper bag (and pump if i think i will be there longer than 3 hrs), and walk over.

If we have a 1:00 appt, I leave town by 10, and usually leave the house by 9. We wil get to the car after our appt by 3 or so. Teddy usually has a melt down at that point, which lasts 15-60 minutes. Load him up, grab lunch and refill the gas, and get on the road.

What I have done with the kids determines what happens next. Either we pick them up from my sister in law’s house and bring them home, have dinner together, and then have the evening to do whatever; or we head down to a friend’s house if they’re there, and eat dinner with them and let the kids play and leave by 8 so I can be home in time to hook T up to his feeding pump at 9; or the kids are at our house with a friend and we come home and all eat dinner together here.

Regardless of the above, once we get home, I have to pump and then unpack the diaper bag (remove dirty diapers, bottles, syringes), repack the diaper bag (with clean syringes and diapers), set up the feeding pump for the night, draw meds for the evening and the morning, and put away all the other things I packed up for the day, like my laptop, phone charger, snacks, etc.

I honestly just kind of want to collapse into a heap after I pull in the driveway.