spoken for

Kayleigh had the Ph test, it started at 8 am Monday and ended at 8 am Tuesday. It tested and monitored several things about her reflux and consisted of a probe sent down just like her current feeding tube, but in the other nostril. Poor baby was quite uncomfortable all Monday and because some things didn’t happen the way they usually do, I was worried that the test results would not be accurate, but might be sort of “sugar coated.” However, in the end Kayleigh met and exceeded, as the surgeon said, all the requirements for getting the fundoplication.

The outside end of the probe was attached to that little black box which recorded the results. The nurses also had to sort of calibrate it by pressing buttons to indicate whether she was lying down or up or was feeding, etc.

Tuesday after the test was finished and the results analyzed and surgery was ready for her, a transport tech and nurse took Kayleigh down in a transport isolete (it has all the equipment she needs attached to it and portable); she looked SO big to me in that thing, it didn’t help that it was a smaller one than she used to spend all her time in. They put us in the pre-op room which was really weird and creepy for some reason, Steve thought so, too. So much for privacy laws, we got to learn a lot about the people around her in there, also waiting for surgery. We talked to the anesthesiologist and the surgeon before she went back. What was really cool was that the surgeon prayed over us before taking her back. It wasn’t some memorized, scripted thing, either, but a genuine, from the heart prayer. (I’m also thankful for our church’s associate pastor who came up in the morning to see me and K and prayed with us.)

We waited in the waiting room which was fulllll of people. Interesting how they do things, too, they gave us a little beeper buzzer thing like we were at a restaurant waiting for a table or something. It went off when K was done and out of her surgery and they led us to a room to meet with the surgeon. The whole time we were in the waiting room, though – about an hour and a half – I was pretty calm. Over the last few days it seemed like everyone I encountered was treating me like I should be just hysterical or something but I knew she’d be fine and I didn’t have anything to worry about, she’s in good hands in more ways than one.

After meeting with the surgeon, we headed back up to her room and were surprised to find that she beat us there. They were finishing up the transport – she came back on a ventilator, of course. During the surgery she was put on it so she would keep with the breathing, you know.

She was still on the ventilator when we left but after getting some dinner with Steve’s family (who showed up about a half an hour after she’d been back in her room) at the cafe, K was opening her eyes and such. The one thing I noticed, which really bothered me, was this look in her face that said, “why, in the name of all that is holy, is this stupid tube down my throat again!?!?!” I could tell she was a little freaked by that and she even gagged a few times. She was back to where she had been before though, unable to make any noise. She seemed panicked a bit at times. I hated that, I could tell she didn’t understand what was going on. But I was comforted in knowing it wasn’t permanent and that after it was removed, she’d forget all about it. They hoped to be able to remove the feeding tube within a few days – I was really hoping it wouldn’t be that long.

When I called to check on her later around 10:30 or 11, they told me they’d given her some more fentanyl because they thought she was feeling pain but she had a reaction to it. From what the doctor told me today, I learned that a reaction can happen at any time when you’re on it, even if you’ve been fine before. K was on fentanyl for the first several weeks of her life for both pain and to keep her sedated in those early days. He told me that the reaction was that it made her chest stiff so that suddenly breathing is very hard. So hard that they had to “bag” her – use the little green bag thing to force air into her lungs (like they did when she was first born. But she recovered well and the breathing tube was removed around 1:30 am! The doctor was impressed at how fast she was able to get off of the tube. Not bad for a little girl who requires oxygen!

I’m not sure how much you can see in the photo, but her G-Button is that white thing there on the left of her abdomen.

That photo above is from this morning. See the photos further above for last night. You can see how the tube snaps into the top of the white thing. The white thing, the “button,” turns. The nurse explained it in a good way I didn’t think of before – like when you pierce your ears. It eventually heals up to be a hole there that’s semi-permanent but leave out the equipment for a time and it closes right up. Inside her stomach is a little balloon filled with sterile saline water, that’s what holds it in place. I’m told that when she’s home we’ll be checking that water once a day.

The button with balloon has to stay in place 5 to 6 weeks for proper healing. (She’ll get the stitches out probably Friday.) After that you can change it, I think it has to be changed every 6 weeks, or earlier, of course, if something happens with it. You don’t want to change it before 5 to 6 weeks, either, otherwise you can push the stomach away from the abdominal wall which isn’t a good thing. From what I understand, if we’re comfortable with it, we can change the thing ourselves, or if we’re not, we can just take her in and they can do it in office. I am not sure I will be comfortable with that – and Steve is shaking his head lol – but then I guess you never know what you’re capable of until you’re actually faced with it. So we shall see what we shall see. But my hope and prayer is that when she hits that 6 week mark we won’t need it anymore and instead of changing it, we can just remove it. That is what I am really hoping for.

I think that’s pretty much everything as far as updates right now. She got the G-button and she got the fundoplication. The fundoplication should have immediate results, the acid reflux should be immediately stopped. Steve said he was concerned that she was still doing a lot of grunting when he saw her tonight (after I’d left). I had to remind him that she does the same grunting with acid reflux that she does when she is trying to get rid of gas or make a poop and this morning they had her G-tube venting because she did have extra air in. So hopefully that’s just it. I’d hate it if this didn’t fix the reflux like it should have.

Oh but I didn’t even mention it – he was able to do both laparoscopically which is so awesome. So instead of huge incisions she has those three little band aids you can see in the photos! Those should heal right up in no time. I’m not sure if he used all three for both surgeries or what but that is awesome.

I’m really admiring me some surgeon right now. Despite the whole cutting on people and blood being involved and other yicky things, even if I had the knowledge to do something like this, I don’t think I could do it – the whole someone’s life being in my hands feeling would be too much to bear. It’s been so great to hear all the nurses and doctors rave about this surgeon even before K’s surgery – several of them said to me, “if my kids needed something done, he’s the guy I’d want to do it.” Each and every one of them that praised his abilities as a surgeon also praised his character. And he did not disappoint.

Thanks, Dr. C. And the Lord, of course. I am so thankful this went over so well. Hopefully this will be the start of things going very well in the line of oral feedings.