Kairi had a GJ tube placed and replaced the broviac on her chest. It was a very long day. The girls woke up at 9am to start getting ready to head over to the hospital. When I called, I was told that, we still didn’t have a set time. By the time I made it to the hospital, the nurse called my husband to let him know Kairi will be wheeled down at 10:45am. It was 10:30am. Luckily, I was already downstairs.
However, when I made it to her beside, I was told that it may be more towards 11:15am. That’s no problem, what’s a few more minutes? I helped the nurse prep Kairi- I changed her diaper, checked her temperature, and just kept her company before we took that walk to the O.R.
11:15 came and we were right on schedule to go to the….. Waiting room downstairs. Haha. My schedule to sit and wait for Kairi during her 40 minute procedure ended up being over 8 hours. We waited in the waiting room for 4 hours with Kairi. During this time, they told us that an x-ray needed to be done to check her broviac. The x-ray today was showing that it was not where it should be and they had to confirm that before they did the procedure for GJ tube. After the x-ray confirmed that it had to be replaced, we sat around some more to wait on the anesthesiologist to talk to me.
It was almost 3pm, and my daughters didn’t want snacks, but real food. My 1 year old screamed bloody murder. Understandable. I wanted to scream bloody murder. But, all I could think of was that, at least we were getting it done finally. I asked the nurse if she can just have the doctor call me. She was very nice and forwarded the message because about 30 minutes later… we received a call.
Kairi was ready for her procedure! Great, this was the news I was waiting for! We sat around in the family room, ate, and watched Cinderella. Then, Cinderella ended and we watched The Little Mermaid. Wait a second, wasn’t it only supposed to be 40 minutes?
We decided to go into Kairi’s room to wait on her there. Maybe the nurse knew something I didn’t. She didn’t. She tried to see if any orders were made, there were. About 15 minutes later, I received the call. Yes!!! They were done replacing the broviac and are now going to let the GI team do her GJ tube. What?
At 5:56 pm the GI team called me and stated it took them 15 minutes to do and that she did great and are ready to send her back once anesthesia was done with her. At around 6:30pm, I finally saw Kairi! We spent a little bit of time. I listened in on what the doctors were saying as they traded off. I got to see her open and close her eyes.
She was plump, back on the vent (hopefully not for long), and had the new GI tube in. It was absolutely amazing. I was so proud. I didn’t care (I did) that it took all day.
I think what had happened for it to be so long was that she wasn’t officially scheduled in for Monday at a slot. (I was afraid this would happen since they didn’t know this on Friday- no one ever knows anything on a weekend. Lol) For the procedure to be done, Kairi needed to be NPO about 6 hours prior. Based on the “maybe” schedules GI told the Neo team, they decided to stop feeds at 3am so that she can be ready for a 9am.
Our nurse was called early morning stating that Kairi had the first slot at 7:30am for BEDSIDE. Again, the communication error. Because of the risk, Kairi was to have her GJ tube placed strictly in the O.R. or the Special Care Surgery Room (I think). When the nurse advised them of this, they scheduled her for early afternoon (again with no time) and with the Special Care Unit. However, when they brought up the broviac, they had somehow had to change the room to the O.R, which changed her whole day. Our day as well.
But, Kairi tolerated it well so far. Seeing the GJ core pack was interesting. She doesn’t qualify for the button GJ tube because of her weight. But, that’s another monster to tackle when she’s ready for it. The girls and I didn’t get back to our room until after 7 pm. They were in bed by 7:30, so in essence we somehow followed our daily routine.