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More Random Updates

– Dr. Brophy said if his labs remain as they are (BUN is 36!!! Another record low. And Creat is 1.6, which I’d have to check, but that might also be a record low.) then we will NOT be starting dialysis.

– A note. His labs are so low because he’s on a LOT of IV fluid and he’s also taking food by mouth/tube. They are artificially low.

– Dr Brophy said when he has a chance to talk to The Maker, he’ll be bringing up Teddy’s situation. That was touching. And, yeah. ME TOO. (He was talking about giving a kid kidney failure and then making it so hard to keep good access. I’m of course talking about the kidney failure itself. This is NO FAIR.)

– The surgeon is very not happy about putting the PD catheter where he did. Pictures when he’s less miserable, but he said Teddy’s got a small belly, and it’s already got a lot of features. He didn’t have too many options, and he also wanted to put it in in such a way that would make it less likely to move around again. He said this particular placement may be uncomfortable until he gets used to it. Hm.

– He also said he placed the port catheter deeper, in hopes it won’t flip around again. He said that deeper placement carries its own risks, so we’ll be on the lookout for those. (His first Broviac was placed deep, and ended up migrating into his tricuspid, so we’ve been down the Too Deep road before…)

– His literal words to me (spoken with a thick German accent) “I hope this works.” Again, me too.

One thing I like about the ped surgeons here, and we’ve worked with all three, is that they’re not assholes. I mean, surgeons tend to be pretty full of themselves, and actually, that’s not a bad feature in a surgeon. Confident. These guys are very humble, soft spoken. Dr. Shilyansky, the chief surgeon, is like a big teddy bear. Dr. Pitcher is just a super nice older German guy. Shaaban, I don’t remember too much. He did one of Teddy’s NICU surgeries, but I don’t recall that I didn’t like him, so he must’ve been OK.

And a note about God and His Plans. I wish T didn’t have to have another surgery, but…

– the high BUN caused us to discover the PD Catheter wasn’t working.

– The not working catheter caused then to hold off on dialysis.

– we were able to discover the nonworking catheter on a nonemergency basis.

all good.

Surgery

I haven’t had a chance to take pictures of his new setup.

They ended up completely replacing both the Port and the Catheter. The new port is in the same place as the old one was. The PD catheter is in a completely different place. I was surprised by this, as I anticipated them at least using the same incisions, but ultimately I’m happy about it. Though I haven’t heard their official reasons for doing it this way, the end result for me is that the PD catheter comes out of his very upper abdomen near his ribcage, rather centrally located. It’s several inches away from his G-tube. Yay! Previously, the catheter was less than 1 inch away, and it made dressing changes so tricky, and when the tube leaked, then we worried about stomach contents getting all over the PD dressings. And the steriod cream I put on the Gtube stoma for granulation tissue (new tissue growth that reminds me of the scarring on trees after you cut off a limb) is really oily, so it was constantly degrading the adhesive on the bandage covering the PD dressing.

He is completely miserable. Completely. I mean, he’s either asleep or he’s crying hysterically and writhing. We’re keeping up on the tylenol, I’m considering asking for another dose of morphine if he is still miserable next time he wakes up.

—-

So, last night, it was getting to be past 10 (2.5 hours after they took him back) and I was starting to get anxious. Then the surgeon stopped by to say that it went really well, that he’d replaced both, etc. and that he’d been in recovery about 10 minutes and I could go see him.

What?

Normally, at UIHC, with kids, they get the parents back in the recovery room almost as soon as the kid gets there. Last time, I arrived at nearly the same time he did. It’s one of the things I like about this place – they believe that kids get stable faster with their parents there, and they WANT parents there asap. There’s none of this “we’ll bring him to you when he’s awake” crap that I had to put up with when W and G had their oral surgeries.

Though other hospitals and surgery centers claim to have all this HIPAA-related concern about privacy in the recovery room, I don’t buy that it’s HIPAA. Each recovery station here has curtains and if anyone has concerns about their privacy, they just pull the curtains. I’ve noticed that the kids/parents in the peds recovery room haven’t seemed to give a hoot.

But, normally, he has surgery during the DAY. Apparently things are different at night. During the day, when they buzz you, you go to this particular door, pick up the phone, press the yellow button, and tell them your business, they let you in, you find your kid, no big deal. At night, that phone is not answered, so you have to go in through the SICU waiting area.

So I got off the elevator where I was told and there was a sign on the desk there to go across the hall to check in. I run across the hall to the SICU desk and tell the woman there that I’m trying to locate my infant who is in recovery. She says she’ll be with me in a minute. I wanted to yell “DID YOU HEAR ME WOMAN?? MY BABY NEEDS ME AND, SO HELP ME GOD, YOU”RE GOING TO HELP ME FIND HIM.” But I didn’t. I waited patiently. Well, I waited, anyway. Maybe not patiently.

After 3 years of waiting, she finished up whatever she was doing and looked him up in the computer. “He went in at 7:30 and came out about 10 minutes ago and is in recovery.” NO KIDDING!!  OK, Sarah, this woman is just doing her job. I calmly said “Yep, I know all that, the surgeon just stopped by his room and told me to come here and be with him in recovery.”

“Oh, well, they won’t let you go back there.”

My inner voice was screaming obscenities at this point, but I said, “yes, they will. He is 4 months old and they’ve always let me in after previous surgeries, I’m just not sure how to get to where he is from here. Can you please direct me?”

“I’ll have to call and find out, because they’ve got a lot of other people in there and you can’t be in there.”

“Ma’am. I am going to be with my son. Nobody is going to stop me. I am going whether or not I have permission. Where is he?” Though I posted on Facebook that I had yelled, I actually did not yell in the sense of raising my voice. (It should be noted that I also did not physically assault her.) I kept my voice under control and did that Non Yelling Yelling that my mom was very skilled at. (the kind where you, as a kid, would say “stop yelling at me” and she’d respond, correctly, that she had not raised her voice.)

“Well. It is a locked door. Somebody has to let you in.”

Now, I’ve been in this hallway many times. I know what door she’s talking about. I’ve stood before it numerous times and said goodbye to my baby before surgery. One time, the nurse, Teddy, and I stood there for 1o minutes waiting for someone to answer the door phone to tell us where to go. During those 10 minutes, at least 15 people came in and out, opening the doors each time. It’s not hard to gain access to the OR suite.

(And never underestimate a mama on a mission. I’m confident I could take out some of the scrawnier residents and steal their badges if the situation called for it.)

She did call, and asked at least three times if they were really super duper absolutely certain that it was ok if I came back there.

So I ran off to where she told me to go, wishing all along that I’d just tried the Wait Until Someone Opens The Door technique in the first place. Humorously, as I arrived at The Door, someone else was leaving and I just cruised on in.

Arrived at Peds recovery and it was empty, with two nurses watching TV. I told them who i was and who I was looking for and they both looked at me like “huh?” At that point, I was near tears and said, “I’m sorry, I’m starting to get very frustrated because I’m just trying to hold my 4 month old and nobody seems to know where he is.” “Well, now, don’t get frustrated! Let’s go look in the other room.” So that lovely woman walked over to the ADULT recovery area, where apparently everyone recovers after hours, found him, and hustled me over to him. yay.

(A word about HIPAA. They solved that problem by keeping my rocker turned facing into the corner, and when they brought someone out and put him at the station across from ours, they just pulled his curtains. No biggie. Funny, though, as he was waking up, they were asking him what is his name, where is he. He was confused and kept telling them his hometown, instead of Iowa City. Then they asked what was the month. He didn’t know. And as I’m listening to this, I’m realizing that if I ever have surgery, I’m soooooo flunking the Post-Op quiz. I had been awake all day, and I had no idea what month it was, either. I wanted to run over and hold that guy’s hand and say, “hey, buddy, don’t worry about it. I didn’t have surgery today, and I don’t know, either!”)

 

For the record, let it be noted, that this woman was not a monster. She was doing her job. Generally speaking, people are not allowed in the recovery room. It’s entirely possible she has never run into the situation of an after-hours surgery and a parent headed in to be with their kid. Her job is to tell families where their loved ones are and whether or not they can go be with them. She was doing that. She certainly could have done it with a little more sympathy, but I’d be willing to bet that she deals with very worried and near hysterical people all day long and has trouble working up much sympathy for just one more stressed out mom. It was fine. I just wasn’t in the mood to deal with her delaying me further.

—-

As a side note, though I’ve never had surgery myself, I’ve stood at the side of both of my parents as they recovered from surgery. Just once with my dad, and I lost count with my mom. Four that stick out. They were always so stinking funny, half in the real world and half in the anesthesia world. Every time, with Teddy, I’ve wondered what is happening in his mind as he wakes up. He cries like he’s scared.

Surgery #7 today

Fortunately, it’s just surgery #7 and not Surgery #7 with #8 to come. Hopefully, anyway.

This morning was somewhat of a whirlwind of confusion, but it became quickly apparent that, though we were told NPO and he’d have surgery sometime today, nobody knew what the plan was because there was no plan. I told our nurse (who looks like Amy Adams) that if they were fixing the PD cath in the OR, then they needed to do the Port at the same time. I was not taking no for an answer. I think I said “I have spoken.” Seriously. Period. We’re doing them both.

And so she promptly called whomever and told them Mom Wants The Port Taken Care Of Too. She got back a response that it might not be possible, but ultimately they worked it out.

So… the plan is to fix the port (hopefully, just guiding the tip back to where it belongs. Possibly replacing it entirely) and then fix the PD catheter (hopefully, just guiding it back to where it goes laproscopically, otherwise with an open procedure, otherwise they’ll pull it and replace it entirely). 2 hours.

His BUN came down to mid 40s today, but apparently, no decision has been made about dialysis. That has me curious. I’d like to get him off the IV fluid and back to just his regular feeds and give it a day or two (convenient – we’re coming up on a weekend) and see what his labs do before making any overly hasty decisions. But they might be thinking things I haven’t thought about. In fact, I hope they are because they have big fancy diplomas and I pay them good money to think of things I haven’t…

They came to get him around 7:30 pm (he’d been NPO since 9 or so, then when they decided he wouldn’t go back until after 4, I requested and received permission to feed him until noon. Still, that was one hungry baby.

Discouraging Day

I am just full of great stuff on this blog, eh? You’d think things never go right. Though now that I’m typing that out, it doesn’t seem like much HAS gone right lately.

Last night, we had a good night. BUN 73 this morning, creatinine the same. Took forever to get anyone from nephrology here with anything resembling a plan. Actually, when one of the dialysis nurses came to start setting up for a few passes today, I had asked her if this was the big “it.” Is this It? Is this dialysis now for the foreseeable future? And she didn’t know, either. As it turns out, nobody has really decided.

They were hoping to do a few manual fills and drains today to get that BUN down. But nothing doing. Teddy was having none of it. Not only that, but his catheter was also having none of it. It would fill, it wouldn’t drain. So, after only getting 20 cc in (instead of the 40 x 4 passes), we gave up.

Back to Xray, his catheter is still jammed up where it doesn’t belong. There was some hope that, since he’s been pooping a lot and seems to have gotten that part of his system working again, everything would have settled back down where it belongs. But nope. They were even having a hard time getting anything out pulling with the syringe (as opposed to just draining, where gravity does all the work).

I believe the next step is a trip to the OR to fix that. I’m not sure what “fixing that” means. We were headed there anyway to get the port taken care of, though I’m not sure what the timeline was on getting the port fixed was. No decision has been made on the port (whether we will replace it or whether we will just remove it).

This does buy us another day to let the BUN come back down. If it comes down significantly, then I think we stand a decent chance of getting out of here without starting dialysis. If not, then it’s clearly just time. The sucky thing is that if his BUN had just come up on its own, then I would feel very settled about it. It would have been a clear indication that his kidney with its tiny amount of functioning tissue had finally just given it up, or was finally unable to keep up with him. But because of all the puking, it’s hard for me to feel like it’s that cut and dry. Dehydration causes high BUN (which causes nausea, which causes puking, which causes dehydration), so was BUN high just because he was puking? Or was he puking because of high BUN?  So having another day – by the time they make any decisions tomorrow, he’ll have been on IV fluids for a good 36 hours at least – will at least help reassure my mind.

 

Greetings from Sunny U of Iowa Children’s Hospital, USA!

2012-03-29 10.52.58

Yes, that’s right, here we are again. I think Teddy likes the nurses or something, I don’t know. Poor kid. He has puked extensively for the past week – waaaay more than his usual – and he’s been crying and whimpering almost constantly. At one point, I estimated he was puking just over half of what he was eating. The good news was that he was eating like crazy, so he was still getting a decent amount. Our doctors decided to wait and see what things looked like on Weds at our regular clinic appointment. We were kind of already waiting to see what things were like, since his BUN had taken a pretty decent jump the week before (which is bad).

And I was expecting it to be high. And I was expecting to stay. But I was expecting like 70 or something. It was 98. Holy schmoly! (creatinine 1.9, which is up-ish, but not overly high for him, and all of his other labs look great.)

So we’re here again. IV fluids all night to see if that brings it back down. I’m honestly not sure right now what the scenarios are. Yesterday afternoon, Dr. Jetton seemed hopeful that IV fluids would bring it back down and we’d be good, and go back to waiting for the next bad thing to happen. Dr. Brophy, when we saw him, didn’t think the IV fluids would make a difference and we’d start dialysis today.

His evening labs showed BUN down to 84, creatinine down to 1.7. Waiting to hear AM lab results.

I tend to want to believe Dr. Jetton’s prediction (of course), but not just because I don’t want to start dialysis – Dr. Brophy has predicted twice now that dialysis is just impending. When we left the NICU Dec 23, he said we’d be back in less than a month. It’s been three months since then. He could just as easily be wrong this time. Teddy seems determined to stay off dialysis.

At the same time, I’ve really let myself relax in the anxiety department, and have started to actually believe that we could make it for a while without dialysis. I mean, I was starting to picture our annual Okoboji trip in June sans dialysis supplies. I was thinking about actually being able to camp in a tent this summer! (not possible on dialysis) And I should know better, because Every. Single. Time. I’ve let myself start believing stuff like that, reality comes slamming back in a most unwelcome fashion.

2012-03-28 09.40.00

He also got two more Xrays yesterday – chest Xray showed port still positioned terribly and stomach Xray showed his PD catheter pushed up high in his abdomen, and what they think was a digestive system all full of poop, which would explain his puking and crying and tummy-upset-ness.

 

2012-03-28 07.24.07

I took this on the drive in yesterday. He woke up and just looked at me like “hey, man. What’s up?”  (yes, I’ve started putting him in the passenger seat for our Iowa City drives. He just cries and cries in the back by himself, and it’s a very stressful trip. I might be willing to do that once in a while, but I just couldn’t do it every week any more.) (um, and yes, I took a picture of him while driving. There was also an unmarked trooper car behind me.)

An un-great Clinic Visit

We had our clinic day today. Nearly ran over two deer (I swear, coming around the corner, the first one looked like a giant muskrat and I was so flummoxed by this, I didn’t see the second one until it was nearly too late). Had trouble staying awake driving there. Not doing 8:45 appts any more.

His new PowerPort won’t draw. It flushes OK, doesn’t draw. We were hoping it would be better today (it didn’t draw well last week, either), but it wasn’t. So he had a line study done (X-Ray #867)

flouroscopy

(This is the restraint they use for flouroscopy for him)

bad port
This is an image from the line study.  You can see the big port there (the big rounded triangle), then the line that comes out of it and runs across his chest to the left (his right). It goes into his heart.

The report says: Findings: A subclavian port catheter is in place, and the distal tip is pointing laterally at the superior vena cava without a caudal turn.

It should have a caudal turn (it should turn down to follow the vena cava). It doesn’t. It’s actually resting against the vessel wall. That’s bad. That’s why it will flush but not draw. It will erode the vessel if left there.

So, plans are kind of up in the air, but it’ll likely have to come out (surgically). May or may not be replaced. And his BUN is up again (mid-50s) this week, so he may start dialysis soon (yeah, we say that a lot, but it’s true a lot, too) and that will sort of make the decision on a port for us.

2012-03-21 12.17.45