As everyone is aware, K has what is called a G-button which is used to administer liquid food through the abdomen wall right into the stomach. Yesterday and through on today was quite an adventure for us all because of this little thing.

Saturday night was progressing well enough. Elijah was already asleep in bed, it was about 9, I guess, when I was holding K and instinctively checked to make sure her G-button was ok. I felt it with my hand and it was in place. Steve came home from his friend’s house and fed K a bottle right at about 11. She fell asleep so he put her in her bed and I started preparing to give her the rest via her tube because she hadn’t quite taken enough by mouth. It ended up being about 1140 when I finally lifted her onesie to put it in and I was pretty darn surprised to find out it was completely gone.

Steve had already headed to bed so I got him back up and we started looking around for it. I found it on the floor right in front of the arm chair where I had been sitting with her earlier. So we figure it came out sometime between 9 and 11 and fell one of the times I got up to to put her in her bed (about twice), or Steve took her from me (once).

I called the 24 hour answering service and it turned out that the surgeon who had put in the button in the first place was on call and they were able to connect me with him right away. He instructed us to head to the emergency room. If this had happened in another 3 or 4 weeks or so, there would be no need for the ER but K hasn’t gotten to that 6 week mark yet. It has only been in about 4 and a half weeks so it’s not quite healed to the point where we can change it yet – not to mention, we haven’t been shown how to replace the silly thing. So the plan was that they would put it back in, inject some contrast dye to check placement, and we’d be on our way.

So to the ER we went. Poor Elijah, we had to wake him up and he was totally out of it. I explained to him what was going on and prodded him to at least get his sweat pants on and some shoes, I put his shirt on and got his church clothes in his bag. It wasn’t until we had left and driven 5 miles and were meeting Grandma at DQ to pass him off that he fully woke up. I had to explain it all over again. I’m really thankful that we have family – and friends – close who could take him in a time like this, I can’t imagine having to take the poor little guy with us, especially not after all K went through.

I think it was about 1 am before we got to the hospital. The ER was pretty empty and the main desk ushered us right through the (completely empty) Pediatric ER waiting room and into a treatment room. We did the basic stuff like get her vitals and change her leads from the ones she wears at home for her apnea monitor, to the ones they have in the Pediatric ER and get her undressed, etc. It was a little frustrating with the oxygen, however, because they couldn’t manage to find a pediatric gauge. They had ones that went from 1 liter of air to 5 but K is only on 1/8. So she stayed on our portable tank the whole time she was in the ER.

The doctor came in and got set up to get the new one in (which, by the way, I had brought with me because apparently I still have some sense about me) only… he tried… and tried… and tried… After all of his going on that it wasn’t a big deal, we’ll get that thing right in, blah blah blah, he wasn’t able to get it in. And poor K screamed the whole time. I was right there with her, helping her keep her pacifier in and giving her some sucrose but she was still, understandably, upset.

It became clear that the hole had already started to close up. So they went and got these catheters of different sizes to try and make the hole bigger again. She was mostly ok with the first two but the third really made her scream and that one wasn’t even quite as big as the actual button that needed to go in. He tried all three and they went in but then he still couldn’t get the button in. Finally, he gave up and talked with the surgeon who told them to admit her to the hospital – it was 3 am at this point – and he’d be there first thing in the morning to put the button back in.

So we got her admitted and headed up to the pediatric unit but not until after she got an IV. At this point, she hadn’t eaten anything since 11pm and even then not a lot and she wouldn’t be able to eat again until after the button was back in and placement was checked. She hated the IV as much or more than them messing with the hole in her stomach and she screamed. And, of course, the first lady couldn’t get the IV in the right hand first. She said she got it in, but it wouldn’t “thread,” whatever that means. So then someone else came in and did the other hand and was able to get it in. But at first it didn’t want to flush and K screamed for that, but then it did. In her room later, the IV kept beeping insanely loud and yelling that it was blocked somewhere. Never did find out why but it woke me up.

It was after 4 am when we got to sleep and the surgeon came in about 730 am. He woke me up and asked me some questions I answered coherently but can’t remember now and I dozed again until I heard K screaming. It took him 2 minutes or less to get that blasted thing in. They then had to give her some dye through the tube to make sure it went in her stomach and not elsewhere (they look at it on x-ray). It was good so we got to go home, very thankful K didn’t have to have surgery again. The poor baby slept for many hours afterward, until Elijah recently woke her up.

A bit confused? The surgeon told us that the balloon on the old one had broken. These things happen, they break sometimes or sometimes they leak slowly. This one broke. But maybe these pictures and diagrams will help a bit if you don’t understand.

post surgery Kayleigh

That is what the button looks like from the outside, that was taken the same evening she got it in. (Hence the breathing tube.)

the missing G-button

This was in the emergency room before things got traumatic. K was actually enjoying herself, lying there kicking her legs, being all good, sweet, and quiet… until they started messing with her. Don’t mind the black under her arms – that is caused by her leads for the home monitors. Stupid things dry her out, too, but you can’t do anything about it because you’re not supposed to put lotions and what not where they go.

The following images are diagrams to show you what the G-button looks like and how it is placed in the stomach. You’ll note the balloon I mentioned earlier. You’ll have to click the images once, then again to see full.

Well, I think that is pretty much it. I think besides K’s discomfort and pain, the most frustrating thing about everything was the fact that of the three departments we’ve been in there: NICU, Pediatrics, Pediactric Emergency Room, none of them can be bothered to have the same equipment. ER and Peds didn’t have oxygen regulators that the NICU has and had to get one from them for K in her room, none of the three have the same monitors so K had to get new leads in the ER then again in her room and neither of those match the NICU or the home monitor we have. The list goes on. I don’t understand why these departments at the same hospital can’t have the same equipment.