Wednesday, October 17, 2012

Unexpected Surgery

Let me start a few weeks back. Right after she had her surgery to get her G-Tube placed. (If you didn't read about the first surgery, you can read about it HERE)

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Right after the surgery was done, they took pictures from the inside of her belly of what the button looked like. It was placed good and looked great. We got home and I started doing pump feeds (feeds done over a longer period of time by a machine that pumps it into her stomach through the button). 
After about a week, I started trying "bolus gravity feeds". It's when you hook the child up to the tubing and on the other end, connect a big syringe (that holds 2oz), and fill it with the liquid you are using. You then just hold the syringe above the stomach and the gravity pulls the liquid into her stomach through the button.
She was doing great with those feeds so I started doing that since it was quicker. Well, as time went on I felt like the feeds were going slower and slower. At one point they stopped going by just using gravity so I attached the other part of the syringe and pushed the liquid into her stomach. I did it slowly and she didn't seem to mind it. Over time, she started to wine as I was doing it and as time went on, they turned into cries and they got louder. Last Saturday night I was feeding her and noticed that her button buddy was soaked. (Button buddy is a cotton pad that goes around button to catch anything that "oozes" out. See picture below. Picture is NOT Oaklynn.)
We removed the button buddy and I continued pushing the liquid into her. I noticed that it was dripping down the side of her stomach and something just didn't seem right. I stopped the feed and called the office after hours service. The surgeon on call called me back and told me it sounded like I was using the wrong tubing but assured me it was OK. Her post-OP appointment was on Monday so I thought it was find since we would be seeing the surgeon soon anyways.

Well on Monday we saw the surgeon and I told her that I can no longer rotate the button (you should rotate the button like you do an earing so that it doesn't form around the device). I told her that when I rotate it, it doesn't move but just goes right back to where it was before, almost like it is stuck. She said that is OK. I also told her that Oaklynn was fussy during feeds and she said it was OK since surgery was only a few weeks ago and she was probably still tender.

The next day I got Oaklynn up and gave her a bottle. I went to put the rest of the bottle she didn't drink in through her button and she started SCREAMING. I stopped and figured it was just sore. I tried it again later that day and again, she SCREAMED. I decided I would try to do a pump feed since you can have it go really slow. I thought that maybe I was just going too fast and she was still sore. The second the pump started pushing the smallest big of fluid into her tummy, she lost it. She was SCREAMING again. I then realized that something was wrong. I called the office and left a message. They called me back a few hours later and said we had to go to the ER. They would have to do an X-ray and even thought their office is still open, they can't do it in their office.

We left our place a 5pm, dropped little sister off at my parents, and went to the ER.
(below is  Oaklynn hanging out in the waiting room)
We got a room in triage at 6:30pm. A Dr. came in to talk to us and examine Oaklynn. She said they were going to order an x-ray. Around 8:15pm we got the x-ray done. They said it didn't look normal. The button wasn't in the correct spot and the fluid isn't going where it should be.
(kissed from daddy before the x-ray started)
We were taken back to our room and told that a surgeon was going to come talk to us about what was next.
(fell asleep while waiting for the surgeon)
Around 10pm someone walked in and said, "They are ready for Oaklynn in the OR." We looked at each other and said, they were sending someone to talk to us about it. We weren't told that we were getting surgery or that it was happening tonight. We were confused. The surgeon came in to talk to us about the procedure and what was happening. We decided to go through with it right then. She said that the longer we wait, Oaklynn could get very sick from it being in the wrong place. 

I guess it was placed right in the first place but over time, something happened where it got pulled out of it's correct position and started causing all these problems. They took Oaklynn from us and started the surgery around 11pm. At about 11:45pm they came to get us and let us know everything went great. They had to do the same surgery as before. Put her completly under, use the scope down her throat, wires down her throat and out her stomach . . . the whole thing (you can read about how it was done the first time HERE). They changed out the button and were able to use the same incision site. Everything went good and we would have to stay over night.
Oaklynn surprisingly did VERY well that night. She slept failry well and didn't cry too much. We were able to be discharged at 12:30pm the next afternoon. We are now home and she is resting and so far doing good.

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Before the first surgery, I was told how much easier the button would make things. I was waiting for when the "easier" part would happen for me. I was constantly second guessing our decision to get this G-tube because of how difficult I felt it was. I didn't understand how others thought that this was easy. She was always grumpy and crying and the site seemed to still hurt! I am now finally excited that this second surgery will now make things much easier for her.

Oaklynn has a high pain tolerance (as do all girls with Rett Syndrome). So when I told the doctors what was going on and they would ask if she was in pain when I would say that she is just uncomfortable and in a bit of pain, they took that as she is fine beucase if something was wrong, she would be in obvious pain. I guess from now on I need to remind the doctors that she has a high pain tolerance.


AR ;-) said...

i'm sorry she had to have a second surgery done :( but hopefully this will go well and work much better for you all!

erin said...

My heart goes out to you and Oaklynn! You are a strong woman! She is so blessed to have such a mom like you, Whitney.