I should note, I impressed the GI with my amazing puke handling skills yesterday. I just jumped up and hustled to the sink in the exam room and aimed his head, essentially pushing the doctor out of my way. He said something like “wow. You handled that really well, just calmly aimed him at the sink!” I’m all, “um, gee, got lots of practice.” I didn’t mention the times I end up cleaning spattered puke off the sides of the furniture, or the time he vomited all over the hallway outside the lab.
We reported promptly at 9:30, hoping to get labs under our belt before our 10:00 appointment with T’s nephrologist. hahaha.
I asked if we had ALL the lab reqs, from renal and GI, and the nurse didn’t think so. Happily, our COC nurse had stopped by for a visit and she ran off to take care of that for me. 🙂 We headed over to the lab, and waited for a while, when our nurse found us to see if we wanted to go ahead and do the cath urine catch first. Sure, why not? (his cathed catch from last time came back with odd things growing in it again, things that are generally considered to be contaminants, so we decided to do another one and make double extra certain that everything was absolutely sterile. To this end, we didn’t use lidocaine (numbing gel). Poor Teddybear.)
So, while that horror was taking place, we got the lab reqs all straightened out. After a quick visit with nephrology, we headed over to the lab again. Waited, waited, waited. Finally it was our turn, but oh, wait – the lab couldn’t figure out the orders. I am not kidding you when I say that we waited for a total of about an hour in the lab. The male lab guy recognized me from last time when I totally lost it on him and kept apologizing for the wait and I felt terrible that I had gotten so grumpy with them last time. (honestly, I didn’t yell or anything, I just wasn’t polite.) (I was, you might say, a “cranky pants.” :-p )
The teenage looking phlebotomist got him on one poke. Awesome.
Ran over to our appt with GI. GI doctor says “I thought we were going to try to get labs early enough that we’d have the results before your appointment…” Yeah, well, it’s not for want of trying, buddy. He said to just come back in an hour and he or someone else would stop by quick between other procedures they had scheduled that afternoon. (Despite the somewhat snarky comments about the timing of the labs, I actually have liked Dr. Hanna so far.) I did have him look at Teddy’s Gtube stoma, which is red and irritated looking these days, and Teddy pulls at it and cries. He looked at it a bit and then asked how recently we’ve changed sizes on the tube. Um… never. Yeah, see when he asked that, it suddenly occurred to me that Teddy’s had that since he was 3 months old and, um, well, it’s never crossed my mind that he might change sizes. Evidently there’s some nifty Gtube Length Sizing Device, and they used it and got us a new tube that will hopefully fit him better. 🙂 THAT was the good news of the day.
So, we putzed around for an hourish, then came back, and waited in a room for another hour. Which was fine, Teddy was asleep in the carrier and I started reading Howl’s Moving Castle (yeah, it’s a book!) on my Kindle app on my phone.
Then the day kind of fell to crap after that. Dr. Hanna led with the good news – Teddy’s PTH is coming down. That’s great news. I was sincerely worried that it’d just continue to climb, but we’ve finally beaten in back into submission.
And his liver enzymes are higher. I don’t know how much higher, but evidently somewhere around the same place they were when they cancelled the transplant – ish.
And his sodium’s down STILL even after increasing his sodium chloride last time, so we’re increasing again, but we’re HOPING that it’s just that he’s not getting his whole dose (vomiting, or because I mix it with his feeds, maybe he’s not getting it all)… otherwise, his kidneys are just showing us that they’re continuing to worsen while we F around with his liver. They’re feeling jealous that the liver’s getting all the attention.
GI ordered more labs, so off to the lab we went again, and this time it didn’t go well at all. First, I had had to wake T up to get his tube resized, and he was already pretty grumpy with me over that. He was also extremely tired. And then the teenage looking lab girl could NOT find a vein. Two diggy pokes, and she sent us to nursing, who did get it, but he was just a ball of screaming misery, and frankly, I wasn’t in much better shape. A mom at the checkout kept trying to strike up a conversation with me and I just kept getting closer and closer to bawling right in front of her. She probably thought I was super rude, but it was a rough day. And T could NOT settle down for the trip home. He’d nod off for a few minutes, and then it was like he remembered all over again how unhappy he was. Eventually, he fell asleep holding my hand – no mean feat when he’s rear-facing in a tall convertible carseat and I’m driving, lol.
So, we’re scheduled at this time for a liver biopsy on Friday. We’ll go in Thursday afternoon, and then stick around for a day after the procedure. Evidently there’s a risk of bleeding and they like to keep adorable little boys in the hospital for 24 hours after a liver biopsy just to be certain they’re ok. I’ve actually packed a suitcase for just 3 days. And then I’m also taking my usual 7 day stay suitcase and am leaving it in the car. Because I know better than to actually count on things going how they’re supposed to. 🙂 If I’m prepared, I won’t need it.
(True story, this is one of the extremely few times I’ve gone to Iowa City without a suitcase, and they were actually considering just admitting us today. ha. That’s what I get for not bringing my suitcase!! That said, I still brought my laptop and my knitting. I can go without clean underwear, but I must have my knitting.)
Hopefully, the biopsy will give us some answers. It might not.
And then the whole team’ll discuss options again, and I believe that basically the field is wide open right now as far as options go. I’m more than a little scared at this point.
Some super amazing friends of our Donor have organized this music-filled evening to benefit Teddy’s fund at NFT.
We started off bright and early at 9 am in Ultrasound. The fact that I only had 3.5 hours of sleep will come into play in my story, so I’ll get that out right now. I’ve been exhausted all week and the short sleep didn’t help.
At 9:30 the nice lady who sits at the desk at ultrasound explained to me that his U/S orders had gotten messed up and they only had orders for a renal ultrasound, not a liver ultrasound, so they were trying to straighten that out. We finally got called back, and Teddy started hysterically crying (the I’m Afraid cry) pretty much immediately. After 20 minutes or so, he seemed to have realized that he had, so far, survived, and calmed down a bit. He hated the gel on him, but I checked and it was a good temp – not too hot, not too cold. The liver ultrasound told me nothing. I have no idea what a liver’s supposed to look like.
Left there finally at 10:15. (Our first doctor appt with GI was for 10. Let’s note that this was NOT MY FAULT.)
Check in at clinic at 10:20. Yes, I stopped to pee.
Evidently, what I SHOULD have done was leave ultrasound at 9:40 (note: before we even got started) so that I wouldn’t be late for our check in time in the clinic. I certainly should not have taken time to pee. SO, we checked in, with the gal who checked us in telling us that a) we were late and b) we had missed an 8:00 appointment. No, I said, the 8:00 appt got rescheduled. No, she said, it didn’t. Well, I said, the latest phone call I received, and the information in his MyChart, says otherwise. If we missed it, I’m sorry, but we were plainly told our first appointment today was 9:00 in ultrasound and we’ve just come from there. “hm, well, go sit down.” OK.
Then one of our regular clinic nurses walks by and sees us sitting there and checks and sees that we’re not actually checked in. I get called back to the check in station. “The nurse asked me why we hadn’t checked Teddy in, but nobody here knew you guys had arrived – you need to check in with the desk here when you arrive.” Um, hello, lady, I literally JUST got done talking with the other gal.
So I go sit down again.
Let me also note that I didn’t have time to reblend Teddy’s food this AM, which means we’re dealing with a chunky blend today. Small chunks, but if you use a pump and blended foods, you know that thick and smooth is oK but runny and chunky is not ok. That damn thing beeped constantly all day. I
Alright. Get back to a room, nurse tells us we need to run to the lab quick, GI wants to repeat the liver enzymes. OK, fine. We’re supposed to get nursing services for labs, but whatever. I feel like it’s a total crap shoot on whether nursing or phlebotomy does a better job these days, so either one is fine. “Renal’s going to want labs, too, do you have his reqs for renal?” No, she says, we can get those later. Um, I say, no, I’m only going to go the lab once today, so if we can just get them all done now, that’d be great. Well, she says, GI really wants these done right away and I don’t have the renal reqs yet. OK, I say, then it sounds like we need to get the renal reqs in a hurry! I mean, honestly.
So she stomps off to track down the renal reqs. By this time it’s past 10:30. She also mentions offhand that he’ll need to be cathed for a urine culture. I ask if we can just use a bag. She says the orders say Catheter, but do I want her to double check? Yes, please.
At the lab, the male phlebotomist who is usually kind of… interesting… starts in on me about the UA. Does he have a bag on? No, he might need to be cathed. Well, we prefer bagging them before we poke them. Well, I’m not really eager to tape a bag on his balls unless I know for sure that’s what we need to do, so we’ll just wait. But, he says, we really prefer to have the bag on first.
At this point, I’ve freaking HAD IT. NOBODY seems to have the SLIGHTEST idea what is going on. I’m stressed out and tired. And I say very grumpily “look, the nurse told me he might need to have a catheter for the urine specimen. We’re waiting to find out for sure. Can we just do the labs so everyone will stop jumping down my throat about how the labs need to be done immediately and we can bag him later if needed? He’s got high output renal failure – producing pee is one thing he does REALLY WELL and I’m confident we won’t miss our chance if he’s not bagged now.”
Um… ok, sure. THANK YOU.
Enter second phlebotomist. I carry T to the bed in the lab. The bed is what we prefer. I don’t have to do as much wrangling and holding him down, he can see me, I can see him, he can’t wiggle away as easily, he can’t pull his arm away as easily, etc. Phlebotomist wants us in the chair. I say no. She says she prefers the chair. I say that I prefer the bed. She says babies kick too much on the bed. I tell her I could give a sh*t less if he kicks her in the face because I’m really tired of arguing with everyone at this place today.
Did you totally believe me? No, I did not say that.
I said in a voice only slightly less grumpy than the one I pulled out for the boy phlebotomist, “He does better in the bed so unless you’re not able to do it with him on the bed at ALL, that’s what we’d strongly prefer to do.” “oh, ok, fine.” THANK YOU.
Male phlebotomist says it sounds like we’ve had a stressful day. I laughed the bitter laugh of the woman who should own a tshirt saying something like “NOT IN THE MOOD FOR ANY CRAP TODAY, PLEASE KEEP BACK AT LEAST 5 FEET.” I apologized and said that nothing seems to have gone right so far today and everyone’s trying to blame us and I’m just grumpy and tired of arguing with people. Woman phlebotomist can’t find a vein. Says so. Looks at me. I look back. She’s looking at me as if she wants me to do something about it. Oh, ok, gosh, yes, I forgot to bring my Magic Fairy Wand that makes OverUsed Toddler Veins Magically Appear.
Then she tried his wrist and got it in one poke and I instantly forgave her for being mean about the chair and I apologized and thanked her for the awesome lab draw.
Zip back over to the clinic. Wait. Wait. Wait. Wait. Wait. Wait. 11:15 or so, our nephrologist comes in (please note, we’ve entirely missed our 10:00 GI appointment). We talk for a bit, nothing overly important. Labs, some med changes. Yes, he does need to be cathed for the UA, so we do that. (His UA pre-transplant was from “fluff.” That surprised me, to be honest, they NEVER use fluff with him. Fluff is like cotton they stick in your diaper and then they squeeze the pee out of it. His sample grew some 5 kinds of exotic bugs. They wanted to be extra double sure that it was just a contaminated sample.)
I filled out humorous paperwork for GI. (“has he ever had surgery” “has he ever been admitted to the hospital.” I think parents should get extra points for creatively funny and sarcastic answers. Like “gee, no,” or “we are on a first name basis with most of the pre-op staff.” There was also the amusing list of health conditions – I was tempted to circle “unexpected weight gain” just for laughs.)
GI came. Thunked his belly. Said the ultrasound looked normal, and his labs all looked ok. They tested a wide variety of viruses and all kinds of hepatitis. His enzymes came down, but are still elevated. They’ve checked everything obvious and everything checks out OK. (That’s the GOOD news!!) The next step is to talk to transplant and see what they want to do. GI would recommend either watching it for a few months (!!) or the next step would be something like a liver biopsy (!!!). I instantly sprouted hives at the thought of either of those alternatives. MONTHS?!? I could cry. Is it sick that I’d rather do a biopsy than wait months?
Then he said that they want us back in 2 weeks to recheck enzymes and he suggested we do labs first thing when we get here. OK, jerkface, what do you think I did? I didn’t get here and check in and then go hang out at the bar. For the love of all things holy, I go where they tell me. You want the labs done before we do anything else (like weight etc), you’re the doctor. You tell them.
Last was Dr Kim from Infectious Diseases. I really liked her. She was pleasant and we just sat and chatted for about an hour about all of the options and what had been checked and what hadn’t been checked and what we could do and what she’d recommend. She was very personable. It was a nice way to end the stressful day.
As I said, I’m running on 3.5 hours of sleep and I’m still having stress and anxiety from the whole “oh, yeah, just kidding about that whole life-saving transplant” thing. I’m naturally sarcastic, and it just gets worse when I’m feeling snarky.
So the plan from here:
Come back in 2 weeks and recheck labs and liver enzymes. Hopefully at that point, I won’t have died of a stress-related heart attack, and they’ll have a clearer plan for transplant. Our donor has a busy summer and I’m afraid we’re going to screw it all up for her. 😦
Let’s talk about Hope. Or some might call it Positive Thinking.
But I’d call it Fantasy Thinking or Wish Believing.
I’ve heard a LOT in the last few days, “But (some magical sign) probably means (something awesome), that should give you some reassurance.” For Example: “But he doesn’t have purple spots on his toes, that probably means that it’s nothing too serious – that should be very reassuring!” “He seems like he feels ok, that surely means there’s nothing too bad going on with his liver, that’s got to make you feel better about things!”
Truth? No. No, it does not make me feel better. No, it is not reassuring.
One thing that many of us medical-needs moms learn eventually (oh, how I wish we learned it quickly, but we almost never do) is not to believe the possibility of good news until it’s pretty well certain. It’s far, far better to not believe in the possibility of something good and be pleasantly surprised than it is to pin your hopes on that possibility and have your world crumble twice over when it turns out not to be true.
This isn’t pessimism. It’s not saying “It’s probably something AWFUL!! Oh, the humanity!!” It’s just coping.
Let me note: I think chances are good that it’s NOT something serious. I do not think he has liver failure, for example. But I’m not letting my mind go to either extreme – I’m not letting myself formulate the belief that it’s not something serious. Nor am I letting myself formulate the belief that it IS something serious. I am actually quite skillfully sitting on the fence in the middle of the road here. It is something that we just don’t know what it is and we’ll find out and we’ll deal with that when we get there.
That’s really all I have to say. I’m alternating between establishing lofty goals (“I’m going to start lifting again.” “I’m going to go get my wisdom teeth taken care of”) and crashing back to reality (“we no longer have a date for transplant, but that doesn’t magically give me more time and energy!” “Holy crap, what’s wrong with this kid’s liver?”).
CVS Pharmacy (our specialty pharmacy, where we get our injectibles) has been giving me hassle – they STILL don’t have his Medicare information in his file. I gave it to them a sixth time. Following up with a letter with a photocopy of the card. This has been going on since January. I mean, I guess if they don’t ever want to get paid, then fine.
And in the spirit of kicking me when I’m down, some psychotic people from my past have reared their ugly heads. Typically, their antics probably wouldn’t bother me, as I generally see them as sad indicators of undiagnosed mental illness and I feel sorry for them – and do genuinely hope they will some day get the help they need, but their sense of timing was superb, and I let them get under my skin, so I’m dealing with the fallout from that, too – mostly just making me feel crappier about myself than I already do.
Teddy’s appointments in Iowa City got scheduled for FRIDAY of next week, so we have a long week of waiting ahead of us. I’ve decided to keep my business closed and focus on finishing 3rd grade math with my 3rd grader in the mornings and doing fun things with all three kids in the afternoons – since I don’t have to worry about anyone getting sick any more, it’s somewhat freeing.
Meanwhile, I wait and worry that some other unnamed threat lurks in my kid’s body, waiting to compete with the kidney disease to see which one will kill him first. And the world somehow keeps turning.
In all of Wednesday’s hubub, there was a sort of funny sort of frustrating sort of happy moment.
The resident who would be handling Teddy during our stay stopped by, and the resident always has a list of standard questions they ask. Among them, what does his diet look like? Anything oral? no. All nG tube? No, all G-tube. (NG goes thru your nose) What formula is he on? He is fed a blenderized whole foods diet. He gets at least 600 mLs of fluid daily and approx 700-750 calories during the daytime hours and another 800 mLs of fluid overnight in the form of 600mL of breastmilk and 200 mL of water. What rate do you run his food during the day? 100 ml/hour And for how long? However long it takes. Well, what volume of formula does he get during the day? It varies from day to day. Why does it vary? Because I don’t feed him the same thing every day. I use a different recipe every day. (I didn’t feel I needed to get into the fact that different foods have different amounts of calories for their bulk, as I felt that this was a basic fact that every human adult should be familiar with) Why? Because he’s a human, so I feed him like a human. At this point, the resident chuckled and left.
He came back a half hour later, “Remind me, what formula is he on?” He’s fed a whole foods, blenderized diet. I take regular food – grains, vegetables, fruits, fats – and blend them up and put it through his tube. “hm. ok.”
A half hour later, the nutritionist came by. I said “I’ve never seen a resident as confused as our resident about Teddy’s diet.” “Yes, I knew you were coming in today and I should have been here sooner.” The resident called her.
It’s silly how difficult this concept is. The nutritionist agreed with me that it should not be this hard. Can they not just write down that today, Teddy has 1 cup of oatmeal, a cup of cauliflower, half cup of broccoli, half cup of peas, an apple, a peach, a pear, 3 T of coconut oil and 2 T of olive oil plus 600 mL water? If he were eating orally, that’s what they’d write down. Just write it down that that’s what he ate, but it was blended up into a big smoothie. How is this so hard??
And I know I make it harder with the recipes varying. But screw that. I’m not feeding him the same thing day after day after day just to make their lives easier. They can cope. Some days he has more volume than others. They’re just going to have to get over it.
But the nutritionist came through again for us, with an attitude of “yes, this is kind of silly how hard this is, but that’s not your problem – it’s our problem. You feed him what you’re going to feed him and it’s my problem to figure out how to make it work with our system.”