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!

playing on the floor @ Children's

We had family coloring time

Cheese

She was coloring... Jilli has one of those at home and we brought one to donate to the 11th floor for all they do for Jilli

She insisted on wearing her yellow sandals

Curled up with her daddy

She wanted to add more color to my Stuffy

nap time on daddy

We watched Lilo and Stitch

switching between passies

watching the penguins

the peacock

watching penguins inside

she was showing us the ducks

Jilli looking at the giraffes

she was out!

playing with her new monkey

she gave him a check up

isn't that monkey feeding tube backpack adorable!

Starbucks Thursday morning

Our view... we were right by the helicopter pad

looking out the window at the end of the hall

she kept pointing at cars

sleeping waiting for Xray

watching her monkey get stuffed

Her 0-6mo Robeez that she is finally fitting in... her feet have been too small

Right after I got the tube in her monkey

Why is that an extra $20?

It has been a weird week... Monday was a long day, If you missed my blog post about Monday here it is. I was just feeling really overwhelmed.
Tuesday went on like normal and we hosted our first connection group for Church at our house. It was small but good. I have missed a good Bible study since my collage days... however I'm not sure any group will ever be anything like that group of girls. I led the study for a while at our apartment and it started around 8pm I think and many nights it would go until 2-3am. Frequently I would go to bed at some point and whoever was the last to leave the house would lock up. I miss the girls and our weekly fellowship. Now we are all over the county, most of us married, several have kids, we have grown up and no longer stay up until 2am for the fun of it, but we are all still connected in being sisters in Christ.
Wednesday was the craziest day of the week. It was snowing out in the morning and the roads were bad. It took me around 15min on hwy 12 to get from Pell Lake to Lake Geneva (should take about 5). 12 was a mess. There was only 1 lane (instead of 2) and traffic was going 35mph instead of the 70mph it normally goes. I called work about 6:45am and said that I was going to be late. I was scheduled to start at 7, however I was still a long way off from getting there. They said that was fine because there were not many kids and there was an accident that just happened outside the building. By the time I got there the police were directing traffic through our parking lot area to get them off hwy 12. It was a mess. A car hit the power line outside of the daycare. Around 7:30 we found out that we would have to close because they were going to have to shut off power for hours and daycare policy is that if you are without power for more then an hour you have to close. Well by 7:30 the daycare had already been open for an hour and a half and there were kid there so all of those parents had to be called to come pick up their kids. Around 10am the last of us staff left a building that was completely dark.
Jillian and I then took a trip up to Children's... see when we were there on Friday I forgot my wallet and thus had no money to pick up her medication. They are only open until 5pm Monday-Friday. I was trying to figure out when I was going to get up there to pick up her med and an unexpected afternoon off provided the perfect opportunity. We got up there without a problem and got her med. When we went to check out the women told me $73.12! I looked at her stunned. In the past this med has only cost us $56. That was almost a $20 jump in a med that already costs a lot. At that point there was nothing left to do but pay the extra $20.
The jump in her med price has now pushed her monthly out of pocket med cost to around $150. This does not include the cost of extra meds she goes on when she is sick. It baffles me that it costs $73 for an antibiotic that has been out for decades. Oh the costs of having a, as the medical community describes her, "medically complex" kid.  I would not trade my medically complex kiddo for the world though.
I did today start looking into the process of a secondary insurance for kids with a lot of medical things going on to help with the costs of it all. I'm so torn about it. Part of it is pride. I feel like someone else could always use help more then we could and thus I would not want to take it away from them. Government programs are low on funding to start with and I don't want to use it unless I have to. I always feel like there is someone worse off. The other part of me is so scared that she will not qualify. The qualification packet is long and legal terms and I consider myself an educated person but it talks in circles. I sent an email to a person about getting the process started and she said she needed the typical info, name, birth date, address and diagnoses. I sent Brent a text that said I did not know where to start. He said to give the women the info she asked for... I replied back that I could except the diagnoses line is "tripping me up, and kicks me down and then punches me in the gut." Part of the reason we have had some issues with our insurance covering some things is because she does not have a label other then failure to thrive and reflux. Those don't qualify you for anything. Those don't mean much of anything in relationship to what Jillian's symptoms are so I am afraid that they will look at that and automatically disqualify her. We will see. I'm still struggling with point one of this paragraph...

Yesterday we met my mom for dinner. Jillian's formula gets shipped to their house so we needed to meet to get it. I brought along 10ml of sweet potato for her to taste with dinner. She took it pretty good. Then a few minutes after she got done eating she started to scream. This is the Jillian "this hurts" scream. I held her and she continued to cry. She calmed down a little and would get distracted playing with something but then fuss again. Anyone who has eaten at a restaurant with Jillian knows this is super strange behavior since she loves restaurants because she can watch people. My mom held her for a little bit so I could eat and then I took her back. Her pants were wet in a weird spot. I looked an noticed her J port was open. That is super odd for that port to be open especially so close to a tube change. Mom and I took her to the bathroom and changed her clothes and diaper. There was green bile everywhere. It was gross. My best logical guess is that it popped open after she ate. The poor girl. Something strange has happened each time we have fed her sweet potato...

Well, right now she is napping, and I have exhausted today so I might try a nap too. It has been one of those weeks that completely drains me. I know that there are harder times then others with Jillian and that some times are harder on me then others. I know this will be at a better point again. It is not that life is bad right now... in fact we have our little girl so life is great, I'm just exhausted... I guess I should cut myself some slack and not beat myself up for being exhausted sometimes.

Speech eval round 2

As I was putting Jillian to bed last night my comment to Brent was "She did not poop today... we ended antibiotics yesterday, she will now get backed up, we will end doing a lot of things to get her poop and possibly have to take her for the doctor for it, she will start pooping again, we will have a normal few days, then she will start vomiting again, she will get pneumonia and an ear infection, she will go on antibiotics again, poop like crazy for a couple of days and then we will be back here. It's a month long cycle that we have lived in repeat for the past three months... but hey at least there is constancy."  You have to give consistency some credit right?!?!?!

Yesterday we went for her speech eval at children's. We were going to have a GI appointment too but they called on Wednesday and cancelled. We still had to go into GI though and do a weight check.

Last vitals on 1/6:
Length: 28.3in (11.76 percentile)
weight: 9.78 (21.56lb)

Yesterday on 1/31:
Length: 28.7in (13 percentile)
Weight: 9.66kg (21.3lb)

The nutritionist will be calling to let me know of any changes to her diet. From November to December she gained too much weight on the EXACT same diet and now she lost.  We are not sure if the loss is due to her being active or her having been sick or if it is just her goofy digestive system. She has been on the same diet for months and she has never made the same gains/loss any month. Her growth charts in spots looks more like a heart monitor.

Then we went to speech. I filled the speech pathologist about Jillian history. She asked me why we were there for a re-eval and I told her that the gastric motility dr was mad that we stopped oral feedings and he said we needed to come see her. I said that he told me that it did not make sense for her to be aspirating on vomit if she had a good swallow study... her comment "he knows better then that." She just kept shaking her head and talked about a few studies that show that what I was saying was correct. She said she agreed with our choice to pull bottles because of the risk of pneumonia and that she thinks that was a good idea. She felt around Jillian's mouth and said that everything was normal for a child who did not eat orally.
I then spoon feed Jillian 2 small baby spoonfulls of formula. The first one she let roll out of her mouth but the second one she took like a champ. We then tried sweet potatoes. She took the first spoonful and let most of it come back out but the second one she did just fine. We are not talking about much food here. Less then a tablespoon amount total. We then kept giving her the spoon but with nothing on the top. She took it like a child would who is learning to eat with a spoon. She wanted more but we knew not to push it or there would be puke. She did a great job!
After she was done we talk about how she has all the oral skills and that this is a GI issue... what have other specialists said:
Neurology: this is a GI issue
ENT: this is a GI issue
Pulmonology: this is a GI issue
Genetics: this is a GI issue
Birth to 3: this is a GI issue
Speech: this is a GI issue

GI keeps sending us to other people but all of them keep saying that this is a GI issue that is affecting other areas.I was not expecting to hear any differently yesterday either.
Speech's recommendation is that we can give her food to play with at meals but not give it to her to eat orally. That we can do tastes with tiny amounts but not enough for her to get any volume. She said that if she is having trouble to stop.
On the way home from speech she must have vomited in the car because there was orange all over her white coat. About 1/2 way home she started moaning for several minutes. That is not like her at all. She normally sleeps the whole ride home but instead she had a hard time sleeping. When I got home I vented about 7-10ml of orange out. At night when we hooked her drainage bag up we got orange globs out... 8+ hours later. So, typical Jillian motility...

Orange Chunks in the drainage tube

This post made me really nervous. Why? Because I am always afraid that then we tell people Jillian is doing a food trail they will think that she is able to eat. When I talk about her trying baby food I am talking about the fact that she ate less the a tablespoon and she vomited and we got some back out hours later. We are not talking about a sustaining amount of food. We are talking about an amount the still makes it so she is 100% tube fed. We are still talking about less then a tablespoon amount just so that she can learn the skills normal to a kid her age but not take in enough to make her puke. We are working hard to keep food a positive thing and for it to stay positive we have to do what we can so that she does not associate food with pain. I just don't want people to think that because Jillian plays with a spoon that has a little favor on it that she will be off the tube soon or that she is able to eat normally. That is not the case. Food trials are one of the hardest things emotionally for me. I see her in pain. We experience vomiting and moaning. The fears of choking are very present. I can't explain why food tastings like this bring out so much emotion in me, but they do. So, no, we are not any closer to her eating orally for calories, but I am ok with that. I was not expecting that we would be after speech yesterday.  We are blessed that she has a feeding tube that takes care of her need for nutrition. She is well nourished and happy and that matters a whole lot more then eating orally.

She found a Doc blanket on clearance... she carried it through the store

She can be such a ham!

She and daddy were dancing

What is more fun then a chair in a tent?

She loves her dolly

Mom, the medical assistant

Wednesday Jillian's sickness started to really turn the corner. Thursday we were still doing nebs every 4 hours and she still sounded rattly, but today she has not had a neb yet. I feel like we have conquered this illness.  Life with Jilli, as with all kids, is a balancing act. We always dance the line of when does __________ illness/problem need medical attention. It is hard to figure out a lot of times. I was talking yesterday with someone at work and we were commenting on how many of the parents blame fevers/runny noses/coughes/ect on kids cutting teeth. It is the go to response and I would bet that over 95% of the time that we are calling parents to tell them that their kid has a fever or something else and needs to be picked up that it has nothing to do with teeth. Kids get sick. Yes, teething causes issues, but trust me it is not to blame for everything. We were joking that if I chose to blame stuff on Jillian's teeth that she would be dead because with her common things get bad fast.
I feel proud because I feel like this time we caught this at the perfect time. I know for most people their child having to miss a week of school due to illness would not be catching it at the perfect time but for Jillian that is impressively low for time spent sick. I knew it had to get to a certain level of "bad" before anyone would do anything for her,  but the trick is for it to not get so bad that it takes forever and days in the hospital to turn around. Her lungs were cloudy and headed for pneumonia but she got on good drugs before it got that far. This time we stopped the perfect storm of upper respiratory problems mixed with a stomach that cant handle drainage. There will be more in the future that we will probably not catch at just the right time, but I'm going to celebrate this one, because man, its hard to figure out the perfect time to take her in. 

In other news...
Today I got to help change Jillian's j tube. It is a good thing we had it scheduled for today because the end/cap for her g pot has been hanging by a thread and sometime during the night it came off so I had to use tape to keep the world from being covered in her tummy juices.

That should be attached to the g tube port

We got there and in the process of getting to IR I think they could have paid me for showing people around. I must have really looked like I knew what I was doing because every time I turned around someone was asking me for directions. Luckily I have been to many places in the hospital and knew which way to point each person. (Ok, that is a little odd/sad, lol).
When we went to check in they were having a hard time finding her appointment in the system but when they called IR they knew we were coming. A nurse from IR came to get us. We went back into this area between the different IR rooms. I was thinking as we drove up how medical this area of the hospital feels. I know we are in the hospital all time but that place is decorated to not look/feel like a hospital all the time. This area does not have anything to make it look less hospital. The walls are white and there are a lot of big machines. 
The nurse asked if I wanted to go back into the room with Jillian for the procedure. Brent went and helped once but I never have. I suited up in a white whole body jumpsuit and a heavy apron. I got to walk Jillian in and put her on the table. I showed them were the g port broke this morning and they got the stuff to fix that part.
Jillian fussed off and on before it started but once they got going she was fine and it is pretty quick. She just looked at the wall for most of it. As long as she did not look at the guy in the room she did better. She has a thing about tall, thin, males in lab coats. They said her tube looked pretty clean on the inside compared to most. I complimented Jillian on making it to a routine tube change. It is the first time she has gone 3 months without a problem with her tube. It normally clogs beyond unclogging or falls out about 6ish weeks in so making it three months like it is suppose to it a big deal. They were also talking about how cool her belt was and I told them where we got them. I LOVE her belts. They make keeping the tubing contained so much easier.
After it was over we headed back out of the room and I got all my fun clothes off. We had to stop back at registration because they forgot to do something and then we were on our way. It is always so nice when tube changes go smoothly.
After we left Jillian and I hit the mall to pick something up quick and then headed home. During the afternoon Dan hung out with Jillian for a little bit so I could call billing departments at different places that there are issues. I love it when I call someplace and they have no idea why we were sent a bill for something that our insurance already paid for. In the evening Jaime and Jason came over and we had such a good time hanging out and laughing.

In other news... her next round of testing has been scheduled for March 5-6. We are excited and nervous for this.

My ear is not bothering me... I'm just sticking my finger in as far as I can for fun

Daddy got me a new toy... Then pretended to arrest me with it!

I dont want this neb!

I think I am all that when I get to play with kitchen stuff

Securing the GJ PEG tube part 2

Ever have those times when it just clicks. Something just makes sense. The other night I was looking at Jillian's rash on her belly and thought that we needed to have something holding her tube in place for a little bit that was not so "hugging." I then thought about the really nice belts we were saving from kangarootique until she got her button. I was sad we could not use them now. Then it came to me. The belts have little "windows" that you put the tube through. What if we cut an ace wrap small enough to roll up under the window and use that to hold it in place. Brent cut the ace for us and it worked! This is my new best idea for holding it all in and safe. We are looking at ordering a few more belts from kangarootique!

Securing the GJ tube~ The belt closed over GJ tube

Securing the GJ tube~ The inside of the belt with 16fr GJ PEG tube

For more ideas on how to secure a PEG GJ tube see this post

On a side note tomorrow we go for the feeding eval. I know this sounds bad but in praying for a bad reflux day so they can see what the worst is like. I never wish pain on her so wishing for a hard day for her is a hard concept for me but I think a hard day tomorrow will overall do her well. Sorry babe! 

After daddy gave her a bath