Wednesday, February 3, 2010

Well-Oiled Machine

It's hard to believe how much we've accomplished in our short stay at Cincinnati Children's already:

- Yesterday, we got checked in and ready for Collin's triple scope procedure smoothly and easily. Everyone - doctors, nurses, etc. - was extremely interested, friendly, and eager to help. At one point, we had three people in the prep room at the same time trying to ask us questions about Collin. Naturally, Collin was a champ during the entire experience. He snuggled with me and Kyle until it was time to go back. I got to hold him as they put the anesthesia mask on him and he loved it. He fell asleep with a precious coo and a smile on his face, which made it much easier to leave. He did great with the anesthesia and breathed on his own the whole time, woke up with no problem, and immediately had a big poop. The findings of the scopes were great: anatomically, Collin's airway, lungs, esophagus, and stomach are proportional, healthy, and properly formed. They saw no signs of aspiration. There was a patch of bumpy skin in his esophagus that could have indicated reflux, so they took a biopsy. Biopsies and the lung wash specimens will be back within a week. His Nissen wrap also looked somewhat loose, which isn't necessarily a problem - it depends on what some of the other tests tell us.

- One such test was the impedance probe, which was placed when his scopes were finished. This is a tiny, spaghetti-like tube that went down his nose and esophagus to measure acid levels and movement up and down the esophagus to detect reflux or other problems. It looked exactly like the NG tube Collin had before his g-tube, except instead of milk going through it, it had sophisticated and expensive wires. He had to keep it in overnight and the data will be processed over the next week. He found the whole thing pretty annoying - especially the fact that we made him wear his hat and a sock on his hand all night so he wouldn't pull the probe out. By far the worst part for him, though, was when we had to take off the tape that was holding the probe in place. Go figure. The things this boy endures without a peep and then he flips out over a piece of tape. I couldn't believe how much he was crying, but I enjoyed it while it lasted, as well as the opportunity to comfort him while he's crying - something I haven't had the chance to do very often.

- After the impedance probe came out this morning, we went straight to the ENT floor for Collin's FEES test (Fiberoptic Endoscopic Evaluation of Swallowing). This involved putting a small, flexible scope through his nose (he was like, 'are you KIDDING me?!) with a camera on the end and hanging it right over the opening of his throat. Then they added green food coloring to some breastmilk and some bananas and tried giving it to him various ways to see how he handled it. Although he had a tough time organizing things into a single bolus that he could swallow, he was able to work some back through his mouth and swallow it. I was shocked when they told me that he did a great job swallowing. I think I had prepared myself for the worst, but even after reviewing the video, the doctors all agreed that they had no fears regarding his swallowing - he is able to protect his airway and swallow effectively. I was thrilled. Collin was not, however, and started crying again when they took the scope out and took the bananas away.

- From ENT, we walked straight to pediatric surgery, where we had a consultation scheduled to discuss all of our findings from our tests this week. The trouble was (welcome to the wonderful world of Collin) that there were no conclusive findings. There is a booty load of information, but none of it is glaring or even indicative of something in particular. The doctor was wonderful and looked back over a good deal of Collin's images, called some of the other doctors, and listened carefully to our concerns and desires. He decided to order one more study for the next time we're up here (to meet with the Feeding Team in two weeks) that will show us more specifically what is going on in the esophagus. At that point, we will have three different tests to corroborate and will hopefully be able to make an informed decision about treatment or surgery.

- At this point, the Aerodigestive segment of our stay ended and the Neurology part began. Soon after we returned to our room from the surgeon, we prepared to take Collin to get his PICC line. This was an amazingly smooth and well thought-out process that seemed to cause Collin no discomfort whatsoever (except for tape removal, of course). They had a light-up crib aquarium for him and he just sucked his pacifier and watched the aquarium contentedly while they inserted a big long IV and snaked it up through his veins.

- We thought we were done for the day at this point until a small woman with a thick accent showed up to take us for an EEG. This was a little perplexing considering we didn't even know Collin was going to have an EEG. We wanted to know why he needed the test and who had ordered it before we agreed to go and she couldn't understand why we wanted to know, so after a few minutes of confusion we finally decided just to go with her and ask questions later. The EEG was fairly standard and uneventful and we should get the reading tomorrow morning.

So now we're back in our room for the night at last. We gave Collin a bath to wash the EEG gunk out of his hair, put on some fresh jammies, and rigged up the cool mobile the Child Life group brought for him. We're going to clean up a bit and try to relax for a few hours. Collin will begin fasting at some point tonight and will have a urine collection (we're really pushing for a bag instead of a catheter), blood collection, and lumbar puncture in the morning. Then he'll be permitted to eat and will follow up with another blood and urine collection. If all goes well, we'll be out of here by early afternoon and headed back home before the worst of the snow.


  1. I also cry when people take away my bananas...just FYI.

    I'm exhausted just reading all that so I think all three of you deserve some type of superhero status. Also, tell Collin to stop making me look like a wussy. Seriously, I have to do all manner of deep breathing when they even take blood.

  2. We all missed you guys last night. Glad this part of the marathon is over and we're praying for clearer answers from all of these tests. Love you all.

  3. Just reading the title of your entry made me feel so much better! Knowing that Children's is doing their best for Collin is an answer to prayer indeed. It's always a good thing to be in the hands of someone who knows how to do their job well (AND cares enough to do their job well!) The weather seems to be holding off. Hopefully, you'll all be snuggling together at home before the snow hits. Love you all dearly,

    Aimee & Steve

  4. I whimper when I pull off bandages (and I'm 30). I can take shots, needles, back pain...but pulling hairs out of any part of my body hurts like the dickens. Tell Collin I completely understand :) I've been thinking about you. Hopefully you all can relax a bit this weekend.