Our Teddy Bear's Journey

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

Clinic Today, Awesome.

We had a great clinic appointment today. Though we have to get labs every 2 weeks for a little while, we don’t have to go back to Iowa City for TWO MONTHS. Two months. 8 weeks. Literally, we have never ever ever been to Iowa City any less frequently than every 4 weeks, and I think it’s only been maybe 4 times total that we’ve had 4 week appointments. 8 weeks. Yowsers. I’m going to forget how to get there! My tires, unflushed transmission, and gas budget won’t know what to do with themselves.

1. Teddy’s labs are stable and really nice looking. Finally, everything is mostly within normal ranges, and the things that aren’t are not panic-inducing.

2. Weight. Teddy lost a half kilo last week from diarrhea, but his labs remained good. Dr. Z said she thinks we finally have Teddy to the place where he can have diarrhea and even lose a little weight from it and not get dangerously dehydrated. Like normal people. Yay. I’m still to call if he loses weight ever again, though. :)

3. Diarrhea. Teddy still has ongoing diarrhea. It wanes and waxes but never goes away. I’m seeking a second opinion with a local GI doctor. Somewhat to my surprise, our nephrologist was really happy I’m taking that step. I’m just not willing to accept the UI doctor’s diagnosis of “toddler diarrhea – nothing can be done about it” without another doctor agreeing with that. When I read the symptoms of Toddler Diarrhea… it just doesn’t seem to really match up. It seems more like “Let’s Call It This Because Then We Don’t Have To Admit We’re Baffled.”

4. Vomiting. Vomiting is getting better all the time, but he still vomits. His labs don’t contain anything that should be making him vomit, so neph and I both think there’s something else going on with his GI system.

5. Eczema. Teddy’s developed Eczema on his legs and arms. I’m thinking it’s dairy, which also caused lots of problems with Wally. He hasn’t had dairy in his diet because of this, but we will literally put every food we own in front of Teddy and see if he will eat it, lick it, or even touch it, and he one day decided he’d eat shredded cheese. He also sometimes eats yogurt and he LOVES chip dip (which I let him have because he eats it with chips, and dry/crunchy is a texture I’m trying to encourage – unfortunately, he never actually eats the chips, and in fact goes to great lengths to spit them out if they break apart in his mouth). So ALL of his oral foods are dairy. Neph didn’t think dietary changes were necessary at this time, since it’s a change of seasons and the eczema could easily be something else. I’m probably going to go ahead and get nondairy versions of Teddy’s foods anyway, see if he’ll eat them, and if so, we’ll pull dairy for a month or two and see what happens.

6. Genetics. We still haven’t heard from genetics. Last I heard, nothing had come back concerning, but evidently that was because nothing’s come back, period. Urg. They’re still wrangling with insurance, and when I say “wrangling with insurance,” I mean, “not taking the time to pursue it with insurance, since they didn’t perceive this as particularly urgent.” Which it’s not, but it still needs to be done. It’s been since June. I was especially glad that our nephrologist didn’t make me feel like a paranoid jerk over this, she said that she herself has been anxious to see the results, particularly since they had mentioned some really horrible things to her that they were testing for. We agreed that we both realized that, since these things are rare, that chances were that he did not have any of them, but at the same time, now that it’s been talked about as a possibility, we both really just want to know. She brought up LaFora Syndrome, which is the one I have been calling the Terrible Awful. Genetics will also eventually hopefully be able to finally answer the question of whether he has an MCAD deficiency. If he does, it’s not presenting in a typical way, but this is Teddy and since when has “typical” ever come into play? Right now, we’re assuming he does not but yet being cautious.

7. Neurology. I mentioned my concerns over the Breath Holding Spells (BHS) and that Teddy’s going to see his ped next week about this. Late last year, Teddy lost consciousness twice in one day and was diagnosed with BHS. It’s an involuntary reaction to strong emotion that causes a child to stop breathing momentarily. In many children, it happens when they’re particularly mad, when they’ve had an injury, etc. Teddy’s has always, always happened after a blow to the head. Only a blow to the head. He’s taken some legendary falls that didn’t involve his head and cried very very hard and been fine. And he’s had some relatively minor bumps to the head that make him stop breathing. That’s somewhat strange. But the other strange thing is that he always vomits afterwards, and nothing in any of the literature I’ve found mentions vomiting. So I’m telling our Neph because she’ll get the office notes on it from the ped and I just wanted her to know, and she got somewhat concerned. (I guess some of the things they’re checking Teddy’s genes for – or not checking, as the case may be – are seizure-related.) So she said to talk to the ped, but if there was any question at all that there might be more than just regular-kid BHS, she wants us to see neurology.

8. Elevated LFTs. His Liver Function enzymes are still high. Nobody knows why.

That might have been it.

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Fish oil, Lying Liars, and Teddy’s Vitamin D status

I’m ready to believe that most of the natural parenting community claiming to have raised their kid’s vitamin D level with just fish oil are all lying about it, and possibly never had their kid’s Vitamin D levels checked in the first place.

Alright, I’m exaggerating a little.

And I’ll grant you that one experience is not statistically significant.

But after buying all the “you can raise vitamin D levels with just fish oil” information that’s “out there,” and after learning that Teddy’s Vitamin D levels were once again quite low, and after being asked by Nephrology to put him on a Vitamin D supplement, I asked if I could use fish oil instead of something more artificial. I received a somewhat unenthusiastic response, but it wasn’t “no,” so we went online and bought what I swear is the most expensive brand of fish oil ever in the universe.

(Blue Pasture Fermented Cod Liver Oil. It’s what everyone I know who uses fish oil recommended, the liars.)

So, after an initial “working up to the full dose” period, I’ve been giving him 5 mL on more or less a daily basis. I’ve had fish oil spilled on me. I’ve had fish oil back out of his feeding tube on me. I”ve had him accidentally squirt it out of the syringe onto himself. We’ve spent a goodly portion of the last 3 months smelling like fishmongers.

What did we get for all that money and effort? Literally nothing. In December, his Vit D was 15. In March, his Vit D was 15. Three months of smelling like I work down at the docks, 3 months of making sure he doesn’t put that syringe in his mouth (makes him gag and vomit, every time), 3 months of spending the GDP of a small country on fish oil. For nothing.

So, that was awesome.

I can’t give him MORE fish oil, because he’s already getting quite a bit of Vitamin A from the sweet potato and squash in his diet (which are non-negotiable with me, they’re calorie-dense and we need those calories).

So, fine, I concede defeat. We’re switching to Carlson’s Vitamin D.

So, internet. Here you have it. A blog that defies the conventional wisdom shared among those who like to do things with whole foods and stuff like that. Fish oil will not reliably raise Vitamin D levels.

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Happy World Kidney Day!

image

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Random pictures of how adorable Teddy is

Who doesn’t want to see pictures of how adorable Teddy is?

20131225_061849 Sleepy Bear Sleepy Bear
Sleeping

Snuggly Bear
Snuggling

Sleepy Bear
Being Silly

Shadow
Waiting for Daddy to come home

Teddy Taking BP Machine for a Walk
At Clinic, taking the BP machine for a walk

Bath
Taking a Bath. This is Teddy’s first honest to goodness bath in the bathtub sitting down. This was HUGE in our household. (Genna’s not taking a bath, FYI. She’s going for a swim. Hence the swimming suit. She hates baths. Loves swimming in our tiny indoor pool. Whatever.) (And Teddy’s not allowed to drink bath water. He hadn’t yet figured out how to successfully get the water to his face at the time this picture was taken.)

Teddy Bath
And he repeated it the next day, without Genna being there to boost his confidence.

Teddy Snow
Playing in the snow

Teddy Snow
Five seconds later.

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Emergency Preparedness for those with Medical Needs

My purpose here isn’t to discuss hard-core prepping. I’m not going to give you secrets to stockpiling your prescription meds in the event of widespread social unrest or an EMP. My purpose here is to help those with medical needs, or those with kids with medical needs, to prepare for those everyday emergencies, like bad weather, car accidents, medical emergencies, etc. For ease of writing, I’m going to proceed as though talking about kids with medical needs, but obviously the same principles would apply to adults.

I personally believe there’s no excuse to not be prepared for the unexpected. I’m the type that has Go Bags packed for every member of the family, that runs fire drills at our house, that has rendezvous points established with family members, and that keeps emergency supplies in the car. For my husband’s birthday this year, I’m putting together a Work Emergency Kit. :)  We’re prepared. But there’s no reason not to be. And, particularly when you have medical concerns to take into consideration, preparation for every day emergencies is even more important.

The first step is to take a minute to list everything your child needs to survive 24 or 48 hours.

For Teddy, that list would be:

Water, Salt, Meds, Feeding pump (though in a pinch we could make do without), feeding tube extensions, syringes of all sizes, diapers, a few changes of clothes, blended food.

Second, thinking through your daily life, list some emergencies that might arise. In my life, that list would include:

- Unexpected hospital admission
- Car accident leading to lots of extra time away from home that we weren’t planning for
- Bad weather heading to/from Iowa City leading to unexpectedly needing to stay overnight away from home
- Loss of power
- Loss of power combined with bad weather making it difficult to leave the house

For other families, that might include:

- Emergency at school
- Inability to get home from school or work
- Evacuation due to fire, expected hurricane, etc.
- Earthquake

 

Third, and this is deceptively simple, figure out how you’ll take care of all of those things listed in Step 1 if anything in Step 2 happens.

I’ll take one example from our list – needing to unexpectedly stay away from home on a clinic day.
Water: I always have his daily allotment of water with us on clinic days, and I always have two bottles of water for me, so in the event I needed a second day’s worth of water for him, I’d have it.
Salt: I bring his salt for clinic day, and don’t worry about bringing the salt for overnight or the next day. If we have an emergency, missing his salt for a day isn’t going to kill him.
Meds: I obviously bring his morning meds with us, since I have to give him those after labs at the hospital. I also bring his evening doses if the weather is iffy, just in case.
Feeding Pump and Gtube extensions: I bring his feeding pump and cord and two bags with me in what I call my “car bag” that I pack on clinic days – it’s a bag for stuff for the car. I also bring one of each type of feeding tube extension in the “Car bag” (in addition to whatever is floating around in my diaper bag, and in addition to the extensions I pack specifically for that day’s appointments – his bolus tube extension that goes in the small insulated bag with his food and the med extension that goes in the syringe holster with his meds).
Syringes: Since we use syringes throughout the day, I always have what we need with us.
Diapers and Clothes: It’s no secret that I keep a suitcase packed for a week in the hospital in my car at all times. So that takes care of clothes and food for me.
Food for Teddy: On clinic days, I bring Teddy’s entire day’s worth of food, and I also pack in the cooler a second day’s worth of food. This is both in the event of a travel emergency as well as in the event of an unexpected admission.
Misc Medical Supplies: I don’t go anywhere further than walking distance from my home with Teddy without bringing his diaper bag. In his diaper bag is a plastic zip close bag full of those bizarre things we almost never need. A catheter and tape, in case of Gtube breakage. A slip-tip syringe in case I need to flush his Gtube or in case it gets pulled out. Lubricant. Gauze. Tegaderm. A small first aid kit. Zip ties, velcro ties, and a few caribiners (which are useful for securing feeding pump bags in the car, or IV bags, etc.). Bleach wipes and hand disinfecting wipes. I used to carry a ton of emergency PD catheter supplies, as well, but we don’t need those any more.

 

Fourth, and this is the most important step here, actually DO the things you need to do to be prepared. Don’t just think about how you could be prepared. Actually do it. Actually go pack an emergency bag you could grab in a hurry if you needed to. Actually write a list of the things you’d need to grab that are not pack-in-advance-able and actually post it where you keep your medical supplies. Actually send a few days’ of meds along with your spouse to work just in case he gets stuck there overnight.

 

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Feeding Tube Awareness Week

Today kicks off Feeding Tube Awareness Week.

 

 

So let’s talk about the feeding tube. Teddy has a feeding tube. He got it when he was not quite 3 months old, because feeding was getting more and more difficult and unpleasant, and he was starting to lose an absolutely unacceptable amount of weight. Teddy’s particular brand of kidney failure meant that his body peed and peed and peed and peed like crazy. Your kidneys filter out garbage, and they also decide how much fluid to retain in your body, and how much salt and other electrolytes to retain. Teddy’s kidneys didn’t do any of that – they just peed out everything. So Teddy needed more fluid and more calories than other kids his age, in order to keep up with what his kidneys were dumping out.

The problem with that is that kidney failure also makes you pretty nauseous. So even though I was feeding him basically around the clock, we just could not keep up.

Life got so much more pleasant after the feeding tube. No more force feeding. I could feed him as much as he wanted orally and then just put the rest in the tube. It was awesome.

And even though he eventually stopped eating orally entirely, and now we have a likely huge long road ahead of us to get him back to all-oral eating, I don’t regret it at all. I can’t imagine how much harder life would have been thus far if we didn’t have the feeding tube. It has, quite literally, kept him alive. It got him his transplant (without the feeding tube, I doubt very much he’d have hit transplant weight yet).

It is, at times, a major hassle. I won’t pretend I don’t long for a kid who just eats food like regular kids. I won’t pretend that I relish preparing a feed every 2 hours, every day, and setting up a feed for overnight, every night. I won’t pretend that I don’t wish that I could just hand him a sliced apple for a snack, instead of having his snack time involve two giant syringes, a blender, and a plastic tube.

But the upsides outweigh the downsides for us. By a long shot.

 

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Let’s talk about the GI system. In other words, it’s a post about poop and vomit.

Teddy’s GI system is a wreck.

I mean, you start with a kid on prophylactic antibiotics for his first year, and then add to that at least 6 rounds of heavy-duty IV antibiotics for line and bloodstream infections. Add in some 10 abdominal surgeries and one brush with sepsis, and you’ve got yourself a digestive nightmare. If he started out life with healthy gut flora, he certainly lost it all pretty quick.

He started out on probiotics, but after his first line infection, I read a few case studies where patients with permanent lines developed infections that were traced back to the probiotics they were on. After discussing whether the probiotics were a good option moving forward, his doctors and I agreed we’d take the cautious route and hold off for a while. Once his lines came out shortly before his first birthday, we resumed probiotics, and he’s been on them ever since, save a month or two after his transplant.

Kidney disease makes you nauseous. Particularly with kids, it tends to make them not want to eat (do YOU like to eat when you feel sick?) and it tends to make them vomit. Teddy vomited every day, 8-12 times a day, from about 2 weeks old until a month or so after his transplant. That’s 21 months of daily vomit, 8-12 times a day.

That’s a lot of puke.

I mean, it’s puke in the car, at the grocery store, in the parking lot, at church, at friends’ houses, at the houses of family members, at the doctor’s office, at Target. Everywhere.

About a month after his transplant, Teddy’s vomiting started showing improvement. Slowly, slowly, he puked less and less. At this point, he vomits infrequently, but still occasionally. Probably 1-2 times a week.

-

Before his transplant, Teddy had funny poop. After I started him on solid foods (through his tube), he never really got that Toddler Starting Solid Foods poop. It was always just on the edge of being diarrhea. We blamed the meds and the kidney disease and hoped it would improve after transplant. hahaha.

So, immediately after transplant, the diarrhea got terribly worse. All liquid, all the time. And I mean, ALL the time. It was so bad that his Prograf levels (one of the immune suppressants) were really unstable. We’d bounce from undetectable (they found no drug in his system) to somewhere around 20 (which is really high) over the course of a few days. And then back down. And then back up. I don’t remember what his target drug level was at that time, but he literally never hit it. Not once. It was either much much too low, or much much too high. And diarrhea affects Prograf levels.

So we switched around one of his other meds, and though that helped get the Prograf levels stable, it didn’t actually help the diarrhea.

So since Transplant, while his vomiting’s been improving, we’ve basically just switched to diarrhea. Teddy poops a texture ranging from all liquid to sort of like really watery grits, 8-14 times a day.

GI had us try reducing his water. He was on 1.5 liters of water every day, since anything below that level had made his new kidney angry. One of his post-transplant admissions was for severe dehydration when he was on just 1 liter a day. So we reduced his water. First to 1.25 liters a day, then checked labs. His diarrhea got better – down to just 4-5 times a day, and generally less watery. Labs looked great. We were thrilled. That was a few weeks ago.

After 4 days of reduced diarrhea, he started back exactly where he was before we reduced the water. 8-14 times a day, ranging from all liquid to watery grits. Ugh. Ugh ugh ugh.

For the last week, I’ve reduced him to 1 liter. First, I reduced him to just 1 liter through his tube, and didn’t count the water added to his food or the water he drinks. Then, I started counting the water added to his food (which is just 100 mL a day). Then, I started estimating how much he was drinking and taking that out of his overnight liquids. And still the diarrhea. The one positive change is that sometimes in the morning, he’ll bust out with a formed stool. It’s happened 3 times now. In his life. Oh, and he USUALLY doesn’t poop overnight any more, whereas he used to poop a good 8 times overnight.

I don’t know what to do at this point. We’ve also removed all fruit from his diet, but with no improvement, I’m not eager to continue eschewing an entire food group. He gets no sugar. No juice (because obviously that would be fruit). He gets enough, but not too much, fiber. Sigh.

So, we have a followup with GI scheduled for the end of this month. We’ll see what they have to say.

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CT Scan

It’s shameful that it’s taken me this long to update Teddy’s blog.

If you follow Teddy on Facebook, you already know that his CT scan came back looking GREAT and he does NOT have PTLD.

YAY!!
Super Yay.

The CT scan day itself was long and tiring (we left the house at something like 4:30 to drop the kids off and then drive out to be there at 8 for an IV (4 tries) before his 1:00 procedure. Upon administration of the sedation, Teddy started having trouble breathing and needed 1.5 liters of O2 to keep his sats up. That had me plenty freaked out, but once they had him moved into the CT room, they figured out that his tongue was in an awkward position and once they moved it, he was able to breathe fine on his own again. Then we stuck around for another 3 hours for hydration. They wanted him to prove he could drink some water before we left, but then – they also wanted us to go home, since they were closed. And he doesn’t always drink water. So we left anyway. And then she told me not to let him sleep on the way home unless I could be in the backseat with him. Um… ok?

Anyway. When I got home, the oncologist had left a message that he had the results but was heading out for the day and if I didn’t have a chance to call him before 5, I could call in the morning. ARGH.

Because they have my cell phone number in his file. And where do they think we are during the 3 hours after we walk out of the building?? Huh??? grr.

So after a long night, I had him paged at 8:01. :) So – no PTLD, that’s super great.

He does have a sinus infection that they saw on the CT scan, but we’re opting to monitor and hope it’s viral and he beats it on his own. He does have lowered immunosuppression still, so that should help.

So, the plan from here is to check labs one more time to be sure the viral levels are stable or decreasing, and then slowly increase his immune suppression back to where we’d like it to be.

His kidney seems to be hanging in there just great. :) The risk of lowering his immunosuppression is his body realizes there’s a giant foreign kidney in there, but so far his body seems to have been so busy fighting the EBV and another virus, CMV, and the sinus infection that it hasn’t gotten around to the kidney on its To Do list, lol.

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Clinic Jan 2

On Thursday, we had our first appointment with Oncology. The doctor was very nice and we had an awkward conversation of him trying to feel me out for what I knew of what was going on and me not realizing that was what he was doing, and also of him trying to get the “best of” version of Teddy’s history, and me uncertain how to answer pretty much ANY question without starting back at the beginning. “How is his appetite?” is not a simple answer – nothing is really a simple answer. Then we had the oft-repeated scene of him asking for a list of Teddy’s current meds, and me saying “do you want strength an-*d dosage, or just names?” and then him deciding that it was too hard for me to remember strength and dosage of all his meds (it’s not – I don’t even carry a current list with me, I’ve always been able to do his meds by memory) and just looking them up in the computer, making me wonder why he didn’t just do that in the first place.

But anyway. I am gaining a keen appreciation for having the same thing explained to me by two or three different people. The way he explained what was going on was either more clear than I’ve heard it in the past, or perhaps the vast quantities of research I’ve done in the last few weeks helped. :-) He said that this is either just an EBV infection that needs to be monitored and treated, or it could be PTLD. Statistics are certainly on the side of it being just EBV, but because EBV is so highly associated with PTLD and other lymphomas in transplant patients, it’s something that must be monitored carefully. The only way to know for sure what was going on would be to do a CT scan and see what his lymph nodes look like. But we need to balance the radiation exposure and the hit the kidney takes from the dye against the benefit of knowing. The oncology recommendation would not change whether it actually was PTLD or if it is just EBV – they’d want to keep immune suppression significantly lowered and monitor EBV levels. So they were going to recommend to Nephrology that we not proceed with a CT scan.

At this point, my inner voice was saying, “hey, I appreciate wanting to reduce his exposure to radiation at this point – after he pretty much already glows in the dark – but I really just want to KNOW!!”

Fast forward an hour to our Nephrology appointment. Our nephrologist seems to have said, “hey, thanks for seeing my patient and giving me your opinion. We’re going to do the CT scan anyway, so could you please set that up for us?” lol. Nephrology doesn’t want to keep immune suppression lowered any more than we have to, and they can develop a better game plan for the suppression if they know exactly what we’re dealing with. Fine by me.

Other highlights: His CMV (another of the viruses that cause lots of trouble after transplants) level is also up, so we’re monitoring that, but it’s not high enough that anyone’s worried. I have read that elevated CMV and elevated EBV at the same time is pretty much not a good thing, so we’re hoping the CMV stays where it is and doesn’t shoot up. BK virus (the third of the Terrible Viral Trio) is still not detected, so at least there’s that. :)

With this UTI, nephrology decided they wanted to be extra double sure his kidney still looks good and that it doesn’t have any hydronephrosis. (To review, hydronephrosis is when fluid accumulates in the kidney.) So we swung over to ultrasound and his kidney looked so very pretty. He even chilled out about the ultrasound after an initial panic that set it once we entered the ultrasound room. The report from the ultrasound says that his kidney is perfect in every way – just not exactly in those words.

I feel like more happened, but here it is Saturday and I can’t really remember.

I’m waiting to hear officially, but it appears from Teddy’s online chart that he has the CT scan scheduled for Tuesday of next week (7th). He needs extra hydration beforehand, but I’m not sure if it’s the “come the night before” type of hydration, or just the “come early” type, lol.

I do know that oncology made me feel bad for saying that he’d need to be sedated if they wanted him to hold still for an hour. Um… he’s two. The guy asked, “well, how do you do ultrasounds?” “Um, I pretty much lay down on the table with him, pin his legs down if I need to, and constantly distract his hands. A 20 minute ultrasound is exhausting.” That sounds horrible – it’s not as horrible in person. I cannot let him kick the ultrasound person in the face, that is why I keep his legs under control if/as needed. His hands need a distraction or he’ll be shoving at the ultrasound wand the whole time. He cries a lot, usually, but it doesn’t actually hurt him – he’s just freaked out.

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January: The Month of Appointments

Nobody has been able to coordinate appointments for Teddy in January, so it was quickly turning into The Month Of Appointments. Honestly, we were going to be driving to Iowa City for planned visits more often than at any point in his life during January. But, I reduced our load a bit now. :)

When we saw GI in December, we agreed to give their plan a try. It certainly made sense, and seemed like a great first step, something to try before delving into more invasive procedures. Their plan was to pull out all the fruit and simple carbs from his diet, and reduce his water to a more age-appropriate level. (Most kids his age need 1 liter of fluid; he gets 1.7 liters to keep his kidney happy.) Nephrology (kidney) agreed we could try that, slowly, and with lots of lab monitoring. Keeping the kidney happy is Job One.

So I was supposed to reduce the water by 250 mL for three days before his next scheduled lab draw, then if that seemed to be OK with the kidney, we’d repeat by reducing ANOTHER 250 mL before the NEXT lab draw. Well…. his next scheduled lab draw was three days after his tonsillectomy and I wasn’t really going to reduce his water during that time period. So, fine, I figured we’d just put it off to the NEXT scheduled lab draw, which is coming up on Monday (12/30). But now he’s got this UTI and the LAST thing I want to do right now is a) reduce his water and b) potentially piss off his kidney.

His followup with GI was scheduled for 1/16. Just doing the math on this – 10 days of antibiotics for the UTI then another culture puts us to 1/4 on the antibiotics and 1/8 for culture. He’ll get labs on 1/7, and 1/14. I could in theory get in the first reduction of fluid, but not the second. Considering that this was sort of a major part of what we were following up with GI about… the appointment seemed rather pointless.

So I’ve cancelled that, and saved us a trip to Iowa City this month. (Hopefully. I don’t know how often we’re going to be back to see oncology and the nephs at this point.) I figure once we have a solid game plan in place with oncology and after I’ve talked to nephrology, we’ll develop Plan B for this fluid reduction and I’ll reschedule the GI appointment – HOPEFULLY to coincide with a day we’re already in town!

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