Brown and Pink Polka Dots : PH Probe round two

We were back at Children's but this time was planned visit. We were there to redo the PH probe test. The last time we did it (a month ago), the results came back super high so they wanted to validate the results.

Thursday morning we woke up to a fowl smell... the smell of rancid formula. Have I mentioned yet the the new AMT extension sets are amazing, however the old one (the only kind med supply has), are not so great. We have been having repeated issues with the med port opening up. This is the worst opening so far. We have no idea what time is opened up however it must have been for several hours based on how soaked everything was and how bad it smelt. Her bed was dripping wet. Her feet were pruned. We quick got her all changed and her bed in the washer. We left the house a little early and went to Starbucks for coffee (side note... if you see a kid with a feeding tube in public, can I make one suggestion... ask their parents before touching them and being all over them. It sends me into a little panic... what germs are you giving my kid while you so sweetly try to be kind to them? Wash your hands, use sanitizer... feel free to touch)
We then headed for Children's. We got a great spot in the parking garage :) and headed up to GI. It is sad but I kinda love that I don't have to go through the who check in process when we go there... we just walk in the door and they say "nothing changed right" "nope" "ok, your all set!"
One of the GI nurses called us back to place the PH probe. We did her weight first. She was at 9.425kg. That is up just a tiny little bit from last month... but not a loss! Her length is still 29.2in. She is down to the 9.87th percentile for height. She was born close to the 90th percentile. She looks a lot bigger because of her button and belt.
We took Jilli into a room and I held her in my lap, an assistant held her head and the nurse put the probe down her nose. We got it all in and the nurse went to tape it and Jillian wiggled her hand free and in one fell swoop she took the probe out. We then had to hold her again and put it back in... This time we got it taped before she got her hands out. We then walked down to X-ray to check the placement. They were having a hard time getting the orders in the computer correctly so it took a long time waiting so Jillian took a nap on my shoulder. They eventually came and got us and we were fortunate enough to only need to take one picture because it was in the perfect place.
We then headed over to admitting. We all were talking about how admitting is in a strange place. Admitting went quick because we know what to do at this point and everything is in the computer. They sent us up to W1103. A care partner came in after about 10 minutes and took her temp and blood pressure. The nurse from the GI clinic stopped in for about 10 sec to drop off paper work and then we saw no one for over an hour and a half to get us all checked in. Poor Jilli had no gown or blankets. Finally a nurse came in and did some of the check in stuff and got her a gown.
We then just hung out for the next several hours. We look her for walks around the floor and colored a lot (she LOVES to color). We took her off her pump at her normal time however we started her back up at 6pm because she needed to go off her pump at 4am because of the next test. After dinner my in-laws came up for about an hour to hang out and see Jilli.
We put Jilli to bed around 9pm. Her nurse at night was really nice and we got to talking because she has a child similar to Jilli. She was surprised to see how well Jilli would sit there and color.
Over the coarse of the day Jilli showed her normal reflux symptoms. We did a lot of recording of symptoms. Hopefully the recorder picked up on them all.
During the night I woke up multiple times with Jillian moaning but overall she had a good night.

Friday morning I woke up at 4am to them turning off her pump. I could not fall back to sleep so when Cafe West opened at 5am I went down and got coffee. Jilli got up around 5:30. We just all curled up on the couch and watched cartoons. We took her for a walk again in the morning. She LOVED looking out the big windows at the end of the hall.
Around 8am the GI nurse from the day before came up to the room with a computer and stuff to run the second test. The GI Fellow came up shortly after. The nurse took out her PH probe out around 8:15am. Around 8:30 the head of GI came up (we got along best with him this time or all our interactions with him. It was a lot better then our other interactions!). Brent held Jilli this time and they put the new probe down her nose. She screamed and screamed.
I then grabbed her and sat down in a chair. She would cry anytime the nurse walked towards her. The dr made the nurse stay away from her. It was kinda funny. She was still fussing a bit so the dr offered to let her watch cartoons on his phone. I got my phone out and we watched in the intro to Daniel Tiger over and over for a while. They then needed to feed Jilli. At first we were just going to do water but then we decided to give her a treat and gave her Sweet-Ease (a sugar water solution that Jilli has loved since her first hospitalization). We went to give her the first little amount and instead of opening her mouth for the syringe she freaked out and ripped the probe out of her nose. We then had to pause the test and put the probe back down her nose... Eventually she calmed back down and and we were able to give her the sugar water. We did a lot of different things with the sugar water. We would give her 1ml at a time, .5ml at a time, continual little drops over several minutes, ect.
Because the Dr. sits and watches the computer screen as the test goes on, you get results at the end of the test. They said the test did not come back totally normal... but not totally abnormal. Instead of taking big swallows she takes a lot of little swallows and then one big one at the end. It is working for her, it is just not the way it is suppose to be...
They are talking her starting feeding therapy back up to work on her swallow. The GI fellow is going to be joining the feeding team in July so we are going to wait until then and then she will take care of Jilli's feeding therapy. I feel so much better about looking at feeding therapy again with Dr. K working with us. I feel like she is the dr in the GI department that listens to us best and really fights for Jilli. We will see what July brings.
We are also going to try something different with her motility meds. We are going to alternate the Cypro and Erythro. She will be on one for 2 weeks and then the other for 2 weeks. They both sometimes don't work as great if you use them continually so hopefully switching them back and forth she will get a better effect.
The second test finished around 10am and then we were discharged. We talked with a few doctors, got scripts for the meds set to our pharmacy and then headed out. We also started her back on thrush meds because after it being gone for 2 weeks it came back.
After we left the hospital we went to the zoo! We got a zoo membership for Christmas so we are able to just go for a little bit, see a few animals and not feel bad if we don't spend the whole day. Jilli loves the giraffes and she has a peacock walk past her. She just kept pointing at things. After being at the zoo for about 45min Jilli feel asleep (probably a sugar crash from all of the sugar water). We then headed to the car and drove over to the mall. We got lunch at the mall and then went to Build-a-Bear. Jillian always sees me adapting animals for other kids with feeding tubes and always wants them. We took her to Build-a-Bear to make her own monkey and use a gift card for Tubie Friends. We even found a little backpack for her monkey. I had them not close up the backs for me so it would be easier for me to adapt it with a feeding tube.
After we were done at Build-a-Bear we went over to the Lego store to get Dan a gift to congratulate him on his new job.
We headed out of the mall and went to Target. That Target store had the Cinderella Duplo set in stock and I had been looking for it since it was on sale this week and Jillian always gets so excited when she sees it in a store. We figured that for this Easter we would just get her two Duplo sets since she loves building. We also had to pick Dan up stuff because he was sick at home with food poisoning. We then headed home.

I ended up having to talk to the pharmacy multiple times because our insurance was being silly. I also talked to Jilli's GI nurse. We were having a hard time scheduling a follow up because her dr is out of town all of June for a wedding so her May is very booked. The nurse ended up squeezing us in on May 16th.

We have to wait a little bit to hear about the PH test because they have to download it and look at the results. They are going to call us with the results.

Today Jilli has just been hanging out. She has a little bit of a cough and is sneezing thick green stuff. We are hoping it is just from all of the irritation in her throat from all the tubes the past two days. Hopefully!