Brown and Pink Polka Dots : Ph probe and motility testing

Wednesday morning we left for Children's around 6:30am. It was snowing lightly at our house but the roads were not too bad, however it took us almost an hour and a half to get up to Children's. There was really only 1 lane on the interstate and traffic was varying from 25-65mph.
We got up to the hospital just before 8am. My mom met us there. We headed up the the GI clinic. One of the assistants that normally weighs Jillian was at the front desk and got us checked in. We were sitting and sitting and then stuff started to get a little strange. The transport unit came in with a stretcher. People were coming in with wheel chairs. There was a medical emergency in one of the rooms in the clinic. They called us back to the room closer to 9. Two nurses came in with us. They pulled out the probe which is an NG tube with sensors that is attached to a small machine. They tried to put it in the first time and she was fighting so much it would not go down, so they put in a little silicone thing and they were able to guide the probe right down her nose into her throat.
We then went down with one of the nurses to radiology to check the placement. Once we got her check in, I headed to admitting and my mom and the nurse took her into an x-ray room. I was coming back from admitting and I got to the elevators by x-ray and I could hear Jillian screaming. One of the receptionists was checking someone in and the other one was on the phone. It was hard to stand there being able to hear Jillian scream but not knowing what room she was in. After a few minutes one of the receptionists was able to bring me to the room Jillian was in. I walked in and they told me that they were having a hard time getting the probe in the correct place. It needs to be two ribs above the diaphragm. They had already moved it twice and she was not happy. They moved it a third time as I was walking in and that time was key. They put a piece of tape on it and then started to take her out of the x-ray chair. As they were taking her arm out the tape started to come off. I then stepped in and taped it. Several months of taping a tube gives you a lot of experience with it. We then went up to our room on W1118.
The floor nurse and care partner met us in the room. The care partner got her vitals and then brought her in a few toys and a new blanket. She was so excited! The nurse went over all of the admitting stuff with us. We did her weight. She is down to 9.375kg. She is now at the 45th percentile for her height, however for her age she is around the 30th percentile for height.
For a ph study you have to keep a log of every time she sleeps, takes meds or shows signs of reflux. You have to press buttons on the machine for each different thing and write it down on a log. I know there were times were she would do something and we would forget to write it or press the button.
During the day my cousin Jake came over and hung out. He was inpatient on the same floor. He and Jillian are buddies. We spent the day trying to entertain her and keep her hands off the tube.
There was talks that she was going to need an IV and they were talking about needing to start it around midnight. I asked that if she needed an IV that we get it started sooner rather then later after her J tube feeding was finished. She is a hard stick and it is even harder if she has been off of her pump for a while. There is also a nurse down in the ER that has been able to get an IV started on Jillian after other nurses have tried and we told our floor nurse about her. Our floor nurse called down to the ER and was able to get her to come up and start Jillian's IV. She got it in on the first try. Normally it is around 5 tries to get it started. I was SO grateful that we got it started in the late afternoon instead of midnight!
After work Brent came up. He went out and grabbed us all dinner. In the evening Jake was discharged. My mom left after dinner.
Around 9pm the nurse came in and asked if we wanted to start her feed a little early since we were going to need to shut it off around midnight and switch her over to IV fluids. I said sure. The nurse brought one of their pumps in and we started her feed. Then the bag decided it hated us. It primed just fine but then once it was set to run like normal, it continued to error every few minutes. After about 45 minutes of trial we figured out that it was the bag. Most likely a hole in the tubing. We replaced the bag and it worked fine. We all headed to bed a little after 10pm. At midnight a nurse came in to hook up her IV. I was up multiple times with her during the night.
We got up the next morning at 5:45. I got dressed quick and headed to grab breakfast. We learned that the cafeteria does not open until 6:30. I ended up grabbing food for us at Cafe West. I got back up the the room and we ate quick. We started to get Jillian ready and they came in and said that we would be heading down soon. With that the person to walk us down to surgery was there. Jillian decided she needed to poop before we left. We got her cleaned up (and the bed) and then headed down. Her GI nurse Lisa met us down in surgery. Then different people came into pre-op to talk to us. Because she is an aspiration risk they came and explained to us how they were going to try to prevent aspiration. They brought in some Versed and it kicked in fast. They were talking about who they were going to have take Jillian back and we said that Lisa would be the best choice because Jillian knows her. We then headed out to the waiting room. I ran back up to our room because I had forgotten to bring the log from her Ph probe down with us. After about an hour they came and told us to wait in the consultation room for the doctors. The wait in that room felt like forever. After about 15min the doctor and the fellow came in. They said there is some irritation in the stomach but they think that is from the tube. They said otherwise it looked ok but they were sending biopsies off to the lab to see if there was anything else going on. They said that the J tube had formed a track in her pyloric muscle and that to put her tube back in that we would need to dilate that area. We headed back out to the weighting room and after a little while longer they told us we could go see her. We went back and after a few minutes they said we could take her back up to her room. A nurse and a nursing student walked us back up to our room. We went through this weird part of the hospital that they don't use currently. We all were talking about how strange and creepy that area felt.
Once we were back up at the room our nurse came in and did her vitals. Then Lisa joined us up in the room with a machine to run the test. For the test Jillian needed to be laying in the bed or held in one of our laps. We started the test around 9:30am. For the first two hours they just watch to see what her stomach does with nothing in it. Then they give her a med to see what that makes her stomach do.
Around late morning the hospital lost power. We were in the dark for a minute or so and then the generators kicked on. A little while after that the fire alarms started going off. They had us just stay put. The fire alarm went off a few times.
In the early afternoon the fellow came up and looked at the test. You could tell by the way she and the nurse were talking that there was something going on. They showed us on the charts what it what suppose to look like and then showed us what Jillian's chart looked like. You could visually see that it was different. The fellow said that it definitely looked like a gastric motility problem. We felt a wave of relief come over us. Finally we had a name for it.
During the test a nutritionist came up. We talked about options to get Jillian to at least maintain her weight instead on continuing to loose. We decided to bump her up to 55ml/her for 17hr a day. She will still get 5, 15ml flushes of water a day too.
We then put milk into her stomach and intestine at the same time. She started gulping and swallowing a lot more. After 25ml of milk were in her stomach and 25ml of milk in her intestines the doctor came up. He looked at the graph and said that maybe they were not getting the full picture and maybe it was not as off as the nurse and fellow thought. He then said to put 30ml more into her stomach. I was so FRUSTRATED with him. Either he does not have great bedside manor or he is a short person. Either way I was getting so frustrated with him and the way he was talking to us. You could see that the nurse and fellow were too but they were trying not to say it. Honestly what the nurse and fellow had told us and showed us made a lot more sense then what he was saying. At this point I just wanted to cry. They were suppose to give us their full recommendations before we left however the doctor said he had a meeting and would not have time so they were just going to discharge us. I feel like he has his mind made up that she has nothing wrong and just needs a Fundo so he is looking for everything to prove that.
About an hour later the test finished up. Amazingly she did not puke at all during the test. Around 4:30pm Lisa and I took Jillian down to IR to get her tube put back in and Brent went to the pharmacy to get one of Jillian's meds. I waited in the waiting room since Lisa said it would probably be a mess.
When it was done Lisa brought Jillian back out and walked into the waiting room and said that Jillian was ready for a bikini because she now had an AMT G-Jet button! Lisa convinced then that Jillian was 10kg before and will be at on 10kg again because we are changing her diet. Apparently that worked because they put in a button instead of a long tube!
We then headed back up to the room. The nurse came in and said that we were being discharged and she would start to get the stuff ready. She then showed us how to use the new button. They said that the button should not spin because that can cause the J part of the tube to flip back up into the stomach. We packed up all of her stuff and headed out. On our way out a floor doctor stopped in and said that she had recognized me the day before and figured out that she was on Jillian's case on her first admission last February.
On the way home Brent stopped and picked up food for us and we met at the house and ate. Jillian and I fell asleep on the couch.
Friday morning Jillian got up at 7am. She was really fussy. I noticed that her tube had turned about 90 degrees since they had placed in. I called GI and left a message. I also called med supply and let them know that she changed over to a button and the fax for the supplies would be coming. Lisa called back and said that we needed to talk to IR. I called IR and we problem solved for a little bit. We figured out that before she had a 16fr tube and her button is a 14fr. They said that it would just take a couple of days for it to close around the smaller size tube and then it should not turn. Until the hole gets smaller we need to keep it taped.
All day Jillian was sleepy and spent a lot of time moaning. I talked to Lisa about IR's idea and told her about Jillian moaning. She said to give her some Tylonal because having that first tube change is painful and during surgery the day before they gave her a big shot of Tylonal in her butt for the pain. Jillian was asleep when I talked to Lisa so I waited to give her the med. She woke up an hour later and had a temp of 100.5. I gave her the Tylonal for the pain and temp. The rest of the day she continued to have a temp around 100.5. She would play for small amounts of time and then would go back to sleep.
In the evening Brent went to Walmart to get more of her acid reflux med because it only last 30 days once mixed and because of her being off of it for over a week, it was not longer full strength. He got there and they said the were out of it because it was a special order and it would not be in until Monday. I had Brent have them check to see if Kenosha had it and they did not either. I was rather annoyed. We get it there every month and have been for a long time. They know we order it every month. This means that poor Jillian has to use a med that is not full strength until Monday. The big problem with this is that she aspirates on stomach acid and if there is extra stomach acid in there she is more likely to aspirate!
This morning she woke up and still had a temp. You can tell she does not feel great. She will play for a bit and then just sit for a while. Her drainage bag from overnight was GROSS! It was green from liver bile and had a lot of clumps of blood in it from the biopsies.

We are still waiting to hear what they have to say about the results of the two tests. Please pray that the doctor looks at it with a clear mind and not clouded by his own opinions. We are feeling kind of defeated right now. We just want the best for our little girl. We want to give her the help she needs and it is easiest to do that when we know what is going on.

Thank you for all the prayers this week and all of the support. We really appreciate it.

On a side note, one year ago today, Jillian got her first feeding tube. She has come a long way in the past year! She is no longer stickily thin, and is more on track developmentally!

Wednesday: