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Tuesday, September 30, 2014

Raya's GJ tube change


Yesterday, we had an unscheduled visit to the hospital. Friday afternoon at 4:45pm, Raya's GJ tube got caught on something and part of the J port broke.
Because a GJ tube has one port that opens into the stomach and another long tube that goes through the stomach and rests in the small intestine, it needs to be placed by an interventional radiologist. At our hospital, the IR department is closed in the evenings and on weekends, so we couldn't do anything but tape it together Friday night and pray that it got us through the weekend (which it did, thank heavens). I was able to catch the GI nurse and she faxed over the order to have it changed, and told me to call IR first thing Monday morning.

I called IR at 7:50 Monday morning and since I assumed they would probably squeeze us in sometime in the afternoon, I took Raya to school as usual. I was 2 steps from the front door of the school when the hospital's phone number popped up on my phone. After a 2 minute conversation, it was agreed that we would go in as soon as we could get there. I had signed Raya into class at 8:20 and I signed her out at 8:30. She was NOT happy with me. When I walked into her classroom and told her it was time to go get her tube changed, she said, "Well, Mommy, that just wasn't very long!" I suppose it's good that she likes school that much. She was also not happy that we were going to the hospital.

Anyone who has ever met Raya knows what a chatterbox she is. In the car, she normally splits her time between talking and singing, but she is rarely quiet in the car. Except when we're driving to the hospital. I knew she was having major anxiety because she did not make a peep during the entire 45 minute drive. The two times that I tried to get her to talk, she was so quiet that I couldn't hear what she said. She sat in her car seat and hugged her blanket. I looked in the rear view mirror about 10 minutes before we got to the hospital and she had fallen asleep, which NEVER happens anymore, and certainly not at 9 or 10 in the morning. We found a spot in the corner of the second floor and then found out that the parking garage elevators were broken, so our choices were to take the stairs or walk down the car ramp. Thankfully, a very kind gentleman offered to help me carry her new but very heavy stroller down the 2 flights of stairs.

Once we got inside, we checked in and then waited to be called. Raya sat quietly in her comfy stroller, hugging her blanket and laying her head against the side of the stroller. Her eyebrows were furrowed and she looked pale and nauseated. I got my phone out to text someone and she thought I was taking a picture, so she smiled. Then I HAD to take her picture. I posted it to social media with the caption "This is what brave looks like." What my friends & family couldn't see was that in between the smiles she put on for the camera, her face was full of concern. She was stressed out and there was nothing I could do to fix that for her. She sat in her stroller, clutching her box of toys she brought with her and staring off into space. She did relax a bit when she saw a girl a little older than her wearing a plastic tiara and a Supergirl shirt in the admitting area. It was enough of a distraction for her to get out and play with her toys for a few minutes.

We got called back up to the desk so I could sign paperwork, and then found out that IR had flooded during the storm we had Saturday afternoon, so we were sent up to the surgical floor instead. We found our way to the surgical waiting room and waited some more. She had no interest in anyone or anything around us, and found solace in watching the Disney channel from the comfort of her stroller, covered up with her precious pink blanket.

I tried to get her to take selfies with me but she wouldn't take her eyes off the tv.

When it was our turn, Raya got her measurements & vitals taken and was very cooperative throughout that process. It's something she's done hundreds of times and thankfully, she rarely ever makes it difficult. The only trouble she has is holding still enough for the automatic BP cuffs. This time, she was anxious enough to stay still and they got it on the first try. She got to pick a beanie baby from the bucket and we got her changed into a gown so we could wait some more.

Raya is usually very sociable with adults. She rarely has any qualms about talking to people, but the hospital is an exception. She would not talk to anyone and would barely even talk to me. She wouldn't even look at anyone but me, and if there was anyone else in the room, she wouldn't even talk to me. All of the nurses, doctors, PCTs, and child life specialists that came in her pre-op room said hello to her and tried to talk to her, but she didn't want anything to do with anyone. Most of the time, she stayed curled up in a little ball, hugging her new bear.

I know she looks like she's sleeping in this next picture, but she's not. That was what her face looked like most of the time. It's a mixture of fear, frustration, boredom, and stress. She did NOT want to be there.


The nurse brought her a portable DVD player with Despicable Me in it. Later, a child life specialist brought in a huge case of DVDs so she could pick something else if she wanted to, but she wouldn't even answer when we asked her if she wanted to keep watching Despicable Me or pick something else. I finally told her she could just point if she didn't want to talk, so she pointed at the DVD player. I considered that a win.

We had a visit from the anesthesiologist to go over what drugs we had used before that had worked well for her, and from the radiologist that was going to be placing the tube. I probably drove him nuts by the time we left because I had so many questions for him. For whatever reason, Raya's 14fr 1.7cm GJ tube seemed much longer than her 16fr 1.7cm G tube had looked. He said that he would take a look and decide if a 1.7 or 1.5 would be best for her and put in whichever seemed like the best fit. I also asked him to go back to a 16fr if they had one in stock, because her stoma has leaked more since she got the GJ in July than it had in a very long time. My last request was that he save the old tube for me. For the past month, I have been fighting a clog in the J tube. Every morning, I would have to push seltzer water in order to get it cleared enough to flush well and feed. I haven't been able to get her meds through it for a couple of weeks now either. I had a mental image of something along the lines of the gunky pipes in a Drano commercial, so I wanted to see if her tube looked the way I imagined that it looked on the inside. He laughed and said he could put it in a bag for me.


I gave her the dose of her sleepy medicine that we had agreed would be a good thing for her, and then we waited about 15 more minutes until the nurses were ready to take her back to the OR. {for clarification, this wasn't an actual surgery, they just had to use the OR since IR was flooded. no cutting required since it was just taking the old tube out and putting a new one in} When the nurses came in, I got all of our stuff gathered up and put it in her stroller and the nurses started to move her bed out the door. That was when she started to panic. She was getting sleepy at that point because of the medicine she'd had, and she was all tucked in under her blanket, so she didn't move much other than to reach for me. Once I got out into the hallway, I gave her a hug and kiss and told her I'd be waiting for her when she woke up from her "hospital nap". (She had asked me about 10 times if we were sleeping at the hospital, meaning being admitted, so I reassured her over and over again that she was just going to take a hospital nap but we weren't sleeping there at night.)

Nothing makes you feel like a horrible person quite the way that hearing your scared child scream for you as she's wheeled off to the OR does. I was thankful that yesterday was one of those days where I'm feeling callous to it all because otherwise I would have burst into tears. It helps when you know they're just changing a feeding tube too, and not doing anything more invasive. (just manipulating a tube into her intestine...) It's still pretty awful to know that she's scared and just wants me to be with her, and I can't.

I had some time to kill in the waiting room so I started reading a fabulous book called Complete Tubefeeding, by the late Eric Aadhaar O'Gorman. It is surprisingly entertaining considering the subject matter. My reading was interrupted by the ringing (or vibrating) of my cell phone. I don't normally answer my phone while I'm at the hospital or doctor's office, but it was an out-of-state number so I figured it was either a telemarketer that I could get off the phone with quickly, or it was something important. It turned out to be the latter of the two. It was the gastroenterology department from the hospital we will be doing motility testing at, calling me to schedule Raya's tests. I wasn't expecting the call, and certainly not right at that moment, so I wrote down what the lady told me and then later thought of about a hundred questions I need to ask, so I will have to call them back.

It felt like it took forever for her to get finished. The radiologist came back out to talk to me and said that the J port that I had thought was partially clogged was actually kinked inside her stomach, and that's why I couldn't get anything to go through it. I'm not sure if that makes me feel better or worse because either way, clog or kink, it is potentially my fault. I was glad to hear that it wasn't full of gunk though. He also answered a few more questions and explained a few more things to me about why they don't use the new 16fr AMT G-Jet button, and only stock a 14fr. I'm not really in agreement with their logic & reasoning on things, but at least now I understand why they do what they do.

A few minutes later, the volunteer at the desk took me back to PACU where she was sleeping off the anesthesia. It's always a bit surreal to see her like that. I'm used to it. I've seen it a lot, but it's still not normal or natural. I don't usually share pictures of her post-anesthesia, but this is part of our reality:

From that point on, all we did was wait for her to wake up. We always try to let her sleep as long as she can so that she wakes up more gently. She slept for about an hour after her procedure. She is so sweet when she's sleeping, even if it is post-anesthesia.





When she woke up, she was still not really coherent but she was alert enough to know that she wanted to get dressed and go home NOW. The nurse took out her IV and took off the BP cuff and pulse ox probe and I got her floppy limbs wrangled into her clothes. We were both very grateful for her new medical stroller when it was time to go. It is much more supportive and comfortable for her than our other stroller, which she is starting to outgrow. The stroller we've been using is great, but she's getting big enough that when I recline her all the way back and she's curled up in it (either because she's stressed out at an appointment or post-anesthesia/tired) I'm afraid it's going to tip backwards. The new one definitely won't do that. Thankfully when we came out of the hospital at 3:00, one of the elevators was working so I didn't have to push her up the car ramp to get to the second floor of the parking garage.

By that point, it had been about 6 hours since I had pumped last, so we sat in the car in the parking garage for a while so I could pump. By the time we had driven through a place where I could get food and a much needed caffeinated beverage, picked up Piper, and driven through another place where Raya could get fries, it was 5:00. Raya slept most of the way home and was really out of it, thanks to the IV anti-nausea meds and the anesthesia drugs. My very sweet neighbor had let the kids come over after they got home from school and was making enough dinner to feed her kids and mine, so I loaded Raya up in her stroller again and we headed down to the neighbor's house. I brought the kids home at bedtime and then put my pajama pants on and went to the grocery store, in that order.

Raya was exhausted and not feeling great the rest of the night but she woke up happy and rested this morning and wanted to have a dance party.

She was as sweet and delightful as could be. After the big kids left for school, I started sweeping the floors and she decided to go get the small broom & dustpan so she could help me.

After that, I gave her the morning doses of her meds and then started her pump, and within 10 minutes she was a crabby, mood swingy mess for the rest of the day. To make a long story short, we think the J portion of her tube may not be in the right position. Hopefully we will hear back from her GI office soon so we can get an x-ray to check placement.


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