The Munchkins

Life with identical twins

The stent is out!

Sorry I didn’t update earlier. It’s been a crazy day.

Pulling the stent out was very straight forward. When the doctor walked in I was sitting on the chair with both girls on my lap. He goofed around with them for a few minutes and then had Caden put her chin on the machine. I put my hand behind her head to keep her from moving (completely unnecessary though), and he pulled out the stent with tweezers. Done and done.

I’m to report progress back in a week or so, but already it looks great. No tearing at all this afternoon! Normally I wipe away her tears anytime I’m near her, but her eye looked crystal clear every time I checked it. Such good news.

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Today!!

Today is the day! We are all very excited. This has been a long journey from Surgery #1 in June 2010. Remember the white pajamas? She looks so little here!

through five more surgeries to finally get to Surgery #6 last October. In December I mistakenly thought we were almost done, only to realize we still had three months of the stent left to go!

I called the doctor yesterday to make sure we were on the same page, that page being WE’RE GETTING THIS DONE. With most patients they don’t even attempt to take stents out in the office, but we both think Caden will tolerate it so it’s worth a try. He kept hedging and I finally said “Listen, she’s four now, I can walk her through it and tell her what to expect, but we need to get this thing out.” So he walked me through what they’ll do, and last night I walked her through it. She didn’t flinch as my hand came at her eye, so I think we’ll be good. I have promised her McDonald’s after (her choice) if she stays very still. He has promised he won’t traumatize her. I really don’t know what we’ll do if he can’t get the stent out and this is dragged out another week or more until we can get an appointment at the hospital.

I’ll update when I get back to the office. Keep your fingers crossed!

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Surgery #6

I jinxed myself twice with this surgery. Were we in recovery at 8:45? No. We didn’t even go back to the operating area until 9:20. Luckily her surgery was quick, she was done in 20 minutes. By 10:00 I was back with her and found out they *didnt* give her morphine while she was under. This is critical for pain management. They gave her something else, saying that she’s so tiny! Surely she didn’t need a full dose of morphine? Except she did, which they ended up giving in 3 doses as I kept telling them she was still in pain. She has a super high pain tolerance, so if she tells me it hurts, then it hurts.

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Because they gave her the morphine after the surgery, they kept us there until 11:30. I had texted a friend saying we’d be leaving soon and then the nurse informed me we’d be there another hour for observation. Ugh. Caden charmed all of the nurses and sprung us out a little early though. After lunch, she napped for almost four hours. At 5:15 I finally woke her up. By that point we were behind on pain management again, and seriously, how long can a girl sleep? Next time I will be clearer with the anesthesiologist about the Plan.

The stent goes in her upper lid only. It’s good because it will be hard to pull out, but it’s also really hard to see so if she does pull it out I’ll never know. The doctor kind of throws his head back and laughs when he talks about her. I told him I was going to keep her nails trimmed short, and he said “She’s good, that won’t matter to her.” Ha!

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Grrr

Comcast is being awful tonight. My phone was cutting out, my tv is pixelated, and my internet is shaky. The big picture post to commemorate Father’s Day will have to wait until tomorrow when I have more time to stabilize things and do some yelling.

Instead, surgery stories! I got the bill for Caden’s last eye surgery last week. Fabulously, I was charged not only for him to put the new stent in, but also to take the old stent out! I get it, I’m sure that there are reason codes that get attached to things and he did take one out and put another one in, it just feels a little like piling on at this point. On cue, Caden’s eye watered all weekend. She kept saying “I have tears!” Poor kiddo. We have an appointment to see the doc in August. I was planning on scheduling the surgery for November, but perhaps we’ll move it up to September. I pray that at age 3.5 she will fully understand the words “DO NOT PULL YOUR STENT OUT NO MATTER HOW MUCH IT BUGS YOU.”

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You have got to be kidding me

So we’re sitting at dinner last night and I think that Caden’s eye looks different. So I ask to see her stent and she giggles. I knew right then, she had pulled it out. I have no idea how she did it because the damn thing was sutured into her nose, but she did. It’s gone.

After rechecking I put my head in my hands because I don’t even know what else to do. It wasn’t even in a week! So I asked her how it happened, when it happened, and she tells me the doctor took it out. Well, we had seen the doctor the day before but I knew he hadn’t done anything with it. She claims it came out at home, which means it likely happened the night before. The girls were crazy and in nonstop motion, so it wouldn’t surprise me. I forgot her drops this morning, and I’ll ask daycare what they remember, but I don’t think she had it in at all today. Of course, she says her eye feels great today!

I think we’re out. Unless there is some sort of sixth surgery for free, guarantee she can’t rip it out deal, I’ll wait a year. Who knows, maybe everything is clear in there right now. Maybe it will stay clear for six months, and we’ll do the surgery towards the end of 2011 (no use putting my paid deductible to waste!). But for now, I’m so done it’s not even funny. So terribly done.

eta: Just talked to her doctor. He laughed hard when I told her she took it out. “Is it hanging out?” Ah no, all the way out. I have a feeling she’s a favorite patient, solely for the entertainment factor. We’ll see him in the next week or two to make sure the suture came out as well, but otherwise he thinks she could be good to go at this point. We’ll revisit this in six months, but we just might be done!

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Update on the surgery

As I was getting ready that morning all I could think was “If anybody asks us if this is our first time here I’m going to punch them in the throat.” Luckily, no one did. In fact, I think there may have even been a note in our chart that this was our 5th surgery because everyone mentioned it and said they recognized us from a few weeks ago. Our anesthesiologist came over to chat, even though he wasn’t doing her surgery.

Surgery took about 30 minutes, which was quicker than last time. It went very well. He replaced the stent and in doing so, said there wasn’t any scar tissue which was a good sign. If we can get one month out of this stent we should be good to go. Once again, she didn’t cry when she woke up. Oh how we love the morphine! She did bleed quite a bit though, which I always hate.

Here’s Caden’s sad face. I think she wanted more juice.

We had the same recovery nurse as last time, so she took her IV out right away and let me dictate when we left which was really nice. Once Caden ate her graham crackers we got out of there. My mom met us at our house and I made the hand off. Caden is pretty wobbly post morphine so it was probably a good thing that she had a nice quiet car ride to chill out in. We did motrin on Friday, but have pretty much discontinued it since she has no pain.

The doctor told me there was about an inch of slack in the stent he pulled out. Where that inch of slack was I don’t know. My best guess is that it was in her nose? And she had pulled it tight? What I do know is that this stent is very moveable. A little too moveable. We were at the neighbors earlier today and there was easily a half inch of the stent sticking out of her eye. All she had done was wipe the tears away, and the stent came with it. She wiped a few more times and it went back in, but came out again a few minutes later. It’s gross and let’s be honest, if this thing stays in for a month it will be nothing short of a miracle.

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Surgery #5

As you’re reading this, Caden is now recovering from surgery #5. God help me if I have to write another one of these posts! If this doesn’t work for whatever reason, I think we’ll wait until she’s older and try again then.

In case you’re wondering why on earth we’re doing any of these surgeries, this picture is a good explanation. It’s old (June 2010), but perfectly depicts what happens. Because her tear ducts are smaller and/or blocked, her tears can’t always drain. Sometimes they do, sometimes they will for months at a time, but often they don’t. Her eye will either be completely full of tears, or like this picture, they will spill out and it looks like she’s crying. Is it life threatening? No. But it is a pain in the ash. It also means that when her nose gets stuffed up (as it is now) she’s much more likely to get an ear infection (or a double, like she has now) because there is just so much fluid all up in there. And so, we’ll try to fix it.

Last time we prayed for Caden to have a swift recovery and for the doctor to be able to safely put the stent in. Clearly, I didn’t cover all of my bases! This time, I’m ready. Please let this be our last surgery!

ps – Caden has been eating everything in sight lately so I was anxious to see what she weighed at her pre-op appointment. No weight change, but she grew 3/4 inch in six weeks!

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Deep Breaths

After seeing the eye doctor on Monday, we continued the antibiotic drops through Wednesday. I forgot them Thursday morning, but her eyes looked clear and bright so I thought we were good. Until she woke up on Friday with mattery gunk in both eyes.

I called the doctor to give him the update, and then was blindsided by his conclusion. Surgery #5. Her eye is obviously not tolerating the stent in its current position, so he needs to go in and move it, or pull it out and put a new one in. His assistant will call me on Monday to schedule it for this week or next. Until then, we are to restart the antibiotic drops and hope for the best.

To say I am Angry would be an understatement. Friday night was awful. Her eyes were non stop mattery. I wiped the junk out only to have more surface. I was envisioning two weeks of this and my resolve was slipping. But, after three doses of the eye drops things cleared up enough for me to realize her eye was just infected, and the drops would keep everything under control.

But still, surgery #5 for what should be a minor problem. Even worse? She has a bad cold now so there’s nowhere for anything to drain. Saturday neither of her eyes were draining, both had tears spilling out.

I pondered all of this while grocery shopping Saturday morning. How I haven’t even paid for surgery #4 and we’re booking surgery #5. How somehow after four surgeries we are BACK WHERE WE STARTED. I’m angry and there’s really no one to be angry at. It’s not the surgeon’s fault, it’s not Caden’s fault, it just is and it sucks and there’s nothing to do but get through it.

Long story longer, Caden spilled my coffee while at the grocery store which I’m pretty sure made steam come out my ears. The girls weren’t in that emotional space where you can really run errands with them and yet, I really, really needed new running shoes. I very quickly weighed the pros and cons and realized the Anger would go nowhere if I couldn’t run. I gave them the rundown, told them the rules, and off we went. They put shoes back in boxes and I got my running shoes, as well as possibly the most heartfelt apology ever from Caden for spilling my coffee. Then I put them down for nap and ran and ran and ran and then I ran some more (oh how I’ve missed running out my stress!) and now I’m less angry. I’m not zen about this by any means, but I’m in a better place.

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Post-op Check

We saw Caden’s eye doctor this morning for her post op check. On Friday she threw an epic fit on the way home from daycare. She sobbed “Put! me! down!” the entire way as I carried her under my arm. That night I noticed her eyes were really red and gunky, so I was a little nervous going into this appointment.

Hopefully I’ll explain this well. Basically, she tore the part of her lower eyelid where the stent goes in. It’s not a terribly big deal and has one good side effect in that she has a bigger “well” for her tears to pool in, so they don’t spill down her cheeks so much. But, it also means a greater risk for infection. We are to continue her eye drops for a few more days and keep a close eye on things. We’re back to see him in another month, and likely taking the stent out in two months which of course will require her to be put under at Children’s.

I think whatever she did to do this damage she did soon after surgery. I haven’t noticed a lot of tears on her cheeks from the beginning, so I’m thinking this happened the day of surgery. And seriously, of course she tore her eyelid! Of course we go back once a month to see the doctor! She greatly enjoys these doctor appointments and the doctor loves to see her. She’s an interesting case, she’s cute, and she’s a good patient while we’re in his office.

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Recovery

The recovery from this surgery went better than any surgery since the first, which was so minimally invasive there was virtually no recovery. She wasn’t crying when I came back to the recovery area, her nose wasn’t bleeding, and she didn’t sleep at all after. We watched some Dora and were out of there by 10:00am which is a record time!

I think the difference was that they gave her morphine during the operation. Last time they gave it to her in recovery, which was too late. We’ve been able to stay ahead of her pain completely. The only thing she complained about was her IV site.

She ate some turkey, crackers, and yogurt for lunch and she ate a lot.

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After lunch she took a three hour nap and now, you wouldn’t know she had surgery this morning. I had planned to keep her home tomorrow, but am now thinking she can go to daycare. We’ll keep doing ibuprofen for pain every 6 hours and she should be fine!

As far as the actual surgery went, he was able to put a stent in through both the upper and the lower tear ducts. Last time he could only get it in the lower, which made it easier for her to pull out. Now her eye is kind of sewn shut in the corner. Super gross visual, I know. He also sutured the stent in her nose. I don’t think she’ll be pulling it out this time!

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