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:

Playing on the iPad

I am a doctor... see my stethoscope!

Jake eating

That is quite the face

She decided that she wanted to wear the PH probe recorder

Daddy came from work... the thing in the bed is the PH recorder

Our Doc Mcstuffins girl with her new blanket

Looking at the fish in the GI clinic

Even with a PH probe in her nose, she is still happy

Tubes everywhere!

Cheese!

Coloring her Doc Mcstuffins picture

Looking at the view

Thursday:

This is how she slept

Right before surgery

reading a book during the motility test

Friday:

Little bit of this and a little bit of that.

First time at the pumpkin farm

So I have not posted in a week. It has been kinda a long week and on top of that my laptop corded ended up bent and had wires that were exposed and I did not realize how bad it was until I plugged it into an outlet and we lost the power to that part of the house, it made a bright flash and a lot of smoke... Add to that a laptop that has a very short battery life and you end up with no posts.
Last Friday I was diagnosed with a sinus infection and the doctor gave me a 10 day supply of  antibiotics and a refill in case the infection was not gone by the time 10 days was over... thats never a good sign. Well 8 days later this infection is still going! On top of it this week I got a stomach bug. Oh well. I think lack of sleep and a little stress might be playing a roll in not being able to kick it.
Monday Jillian went to her Ped for her 9mo check up! On their scale she was the exact same weight as last month at GI. Her doctor looked her over and said that she looked good and she got 1 shot. :(
Wednesday night we had some family time and went for a walk in the park and to Target. That night she started up with the seal cough again. She had a hard time sleeping. The cough continued through Thursday and Friday we ended up giving her a neb because she just could not stop coughing. That seamed to really help and cut down the coughing a lot.
Friday morning the three of us went to GI. I have to say I was a little nervous! Big appointments make me nervous for the couple of days before because I feel like there is always a little bit of uncertainty. It takes work to mentally prepare for them.
Friday when we weighed her she was up 2oz since last month! I know that is not very big compared to other weight gains she has made while on J feeds but I was worried she had gone down a little so a positive number is good even if it is small!
When we got into the room we found out our normal nurse and nutritionist where gone! This sent me into a little bit of a panic. To be completely honest, those two are part of the reason we go there. A different nurse came in (that we had an interesting experience with inpatient before) and a different nutritionist came in. At first the nurse asked us some odd questions (like we are always asked "safety" questions inpatient but never at a clinic visit... today did we look like gun all over our home?) They then asked us about how the last month has been and I filled them in. The nutritionist asked if Jillian was on any vitamins. I told her no, but that we were wondering if she should be. She said she and the doctor would talk about it.

Hiking the Pottawatomie trail in Lake Geneva

When the doctor came in Jillian let her pick her up! Jillian is starting to trust her. We talked about the choking on nothing and how scary last Friday was when she choked after crying. We talked about the test results from the gastric emptying scan and how Jillian clinically commonly shows the opposite of the results. We talked about how Jillian needs laxatives daily to poop. The doctor then said that clearly she has a motility disorder. A name to this! The definition of a motility disorder from the Children's website is: "condition where a person's nerves and muscles in the gastrointestinal tract are not working together correctly. Typical symptoms of a motility disorder are constipation, a swollen stomach, pain, nausea, vomiting and diarrhea." Jillian has everything on that list except a swollen stomach (most of the time) and diarrhea. This make sense because it means that everything is not coordinating together the way it should. Yup, sounds like Jilli! For now at least, the name does not change anything. It gives a name to her symptoms however the coarse of treatment she is currently on is what we will continue for her.
The doctor looked at her diaper rash, which has come and gone since she pooped out the stuff they gave her for the gastric emptying study. She said it looked like it has turned into a yeast infection. That made since too because she has had a funny smell around her tube site a hew times this week and they said it might just be one giant yeast infection so she is now on a med for that.
She looked at the tube site and said that it looked alright. She asked when she was moving to a button and we explained the conversation with the head of IR. You could tell she was trying to keep professional and said she guessed it was fine to wait until December. I'm positive the head of IR never sent anyone notes like he said he would...
We talked about what to do when the breast milk runs out. I stopped pumping over Labor Day weekend, however we still have a lot left in the chest freezer. I wanted to have a plan in place for what to do once that was gone. She said that she would go to Elecare. That is an amino-acid based formula that is broken down even farther then the formulas in the baby isle. It is for kids like Jilli and has a price for kids like Jilli... around $45 a can and when she switches to just formula a can will last us 3 days! Ouch! I told my dad that we are doing are part to keep hist Abbott stocks healthy!
We also talked about vitamins and decided that we would add one to her tube. They are going to send a scrip to our mail order pharmacy.
The dr. also decided that she would like Jilli to be evaluated by the feeding team again and would be placing a referral in for that. She has not been evaluated by them since April so it is probably a good idea! We will see what they have to say.

In the afternoon I called our insurance about an issue and asked while I was on with them if they would cover Jillian's formula. They said they would cover it after we met our deductible for her for the year of $2,000 and then pay 80% until we met our out of pocket for the year of $3,500 for her. We hit all of that already this year but that will be how it is come January 1st. At $15 a day for food, $15 a day for pump rental and about $2 a day for the pump bag, it costs her $32 a day just to eat. It will take her 62 days to meet the deductible for the year for her if all she does is "eat" in the first two months of the new year and does not see a single medical professional. haha! I bet we hit our our of pocket max by the end of February like we did this year. Lets just hope next year our out of pocket max kicks in on time next year and I'm not still fighting it in September...
I talked to med supply also and they do stock Elecare so we can get it through them. I try hard to keep away from the insurance company's "recommended" company because all I hear about from the feeding tube community is that they are no good and just keep getting worse. So while at times I get annoyed with our supplier they are better then many others!



Well it is Saturday and in my house growing up that meant cleaning day. The boys just got home from Home Depot and we are going to start on cleaning/house projects... if anyone has a magic wand that would like to complete all of it for us I would take it... :)

Don't Mess With a Mama Bear...

watching Pooh in Gastric Emptying Study

Friday morning we did Jillian's gastric emptying study. I was a little nervous about her needing to lay still for 90min. Brent had a comp day from work (he put in over 120hr during the last pay period) so he was able to go with. She laid still so nicely. She fussed when they first put milk in her tummy though the g port but after a few minutes she stopped fussing when they wrapped her up tight and put on Pooh Sing-Along-Songs (maybe Jillian needs that for her birthday...). She just watched it and played with toys. She fell asleep and slept for about the last third of the test. We woke her up when the test was over. They told us that her doctor would have the results within 24hr and that it might take a week for them to call us about the results. We then left the hospital and headed over to Mayfair Mall to have them look at my iPhone.
Once we got to the car in the parking structure (9 spot) we decided we would hook her back up. The pump kept erroring but eventually we got it to go for a little bit. Once we got to the mall they told us it would be an hour wait for them to look at my phone. During that time I lost track of the NO FLOW OUT errors that occurred. After lunch we went out to the car to try to flush the line to see if that was the problem. No movement at all... grand! We went back into the mall quick and they replaced my phone because the broken part could not be fixed.
We then headed back by the hospital. On the way I called IR and was able to talk to the radiologist that we have worked with before and have a good relationship with. He said to stop in and they would see if they could unclog it.

Sleeping during gastric emptying study

We got in and a nurse (she helped with the morning test) took us into a prep room and tried with no luck to unclog the tube. She then left the room and came back in with our favorite guy and the head of IR (he did not introduce himself). They tried and said that it was clogged and would need to be replaced. We asked that since were there if we could just change it to the button instead of coming back next week. At first the answer was no. Then a nurse came in and said maybe. Then she came back in and said that Jillian did not weigh enough to have a button... WAIT... WHAT?!?! She said she needed to be 10kg and she was not. I asked for her to be weighed and she was around 9.1kg! They then took Jillian back to just change up the white tube in the middle of her tube. After they brought Jillian back to us our favorite radiologist came in. He explained that the 10kg was a new hospital policy that was going into place but it was not a hard fast rule. We talked about how GI and Surgery had referred her to get it changed and they both knew her weight and knew her story. He said that if they were both good with it then ok, he needed to do something quick and then he would be back. At this point we were under the assumption that she would be getting a button the following Friday like planned.

I got my tube!

Then the head of IR walked in... Change tone of everything. He then told us that he had been at the hospital as the head of IR for 7mo and based on his experience they are implementing a new policy that to have a button you have to be 10kg. I asked why. He said there is less problems. I asked for more details. This is where it got interesting. He said moms don't blog about bad things, people dont talk about when children die from tube placements going bad and that Kimberly-Clark has a lot of money to invest in people liking their product and that they buy out people's opinions! He said that he did not know why I wanted a button and that it is like a nice shiny sports car but you cant keep it's engine running because it has to be changed every 3 months (something we knew... something that is true of feeding tubes). That if he had a child that needed a tube they would only have a PEG tube. That he could not see how something that is sticking far out of her would be interfering with her daily life (it most definitely does...). He insinuated that buttons are dangerous and could cause death. He kept saying that they could flip up into the stomach (something that could happen with any lengthy tube be it PEG or button). He said that even though GI and surgery are involved with tubes IR is the one that has to deal with them. He insinuated that we wanted to switch to a button for us and it is not in the best interest of Jillian. He acted like we were trying to hurt Jillian. I was so offended and ticked off. He said that he prefers a child be 16mo old before getting a button but he would compromise with us at 12mo.
I asked him why no one had told us before about this 10kg rule and he said that no one knew about it but the rule was being put in  place by a joint decision between the three groups... huh? No one knows about this but we decided it together.
 He did ask our favorite radiologist what he thought and he said that he agreed (he maybe said 20 words to express his agreement). I wonder what he would have said had his boss not been there. This guy was just going to go ahead with doing it so I find it hard to believe that is entire opinion changed.
If the head of IR had not insulted us, groups of people we belong to and been difficult maybe we would have just left saying fine, if its a policy then its a policy, but instead we are mad. But this is also the second policy change that Jillian is stuck in the middle of that could change the outcome of Jillian's care. I am annoyed with policy changes that change things without anyone knowing about the new policy before the procedure and then it changing things. There is obviously a problem with communication. 
Since we got home that day I have been researching problems with GJ buttons... and after reading every article on the first 3 pages of a google search on the topic I have yet to find a difference in problems with the PEG and button. I talked with people from Feeding Tube Awareness and they said that they don't know of several of the things that he mentioned or that they are opposite. I have found a study of GJ tubes that did not differentiate between the two types of tube and said their is a 0.4% chance of death with a GJ tube placement. That are low odds and considering that these tubes are placed in medically fragile people 0.4% death rate is better then I would have thought.

Daddy looking at her 4th tooth coming in while we waited

So now what to do about it. We are looking into that. We think a button would make Jillian's life easier (and yes in turn ours) but if you think we do any of this for our convenience you are sadly mistaken. We are the ones that get up at 2am EVERY night. We give up sleep, money, time, relationships, and energy for the best for Jilli. You try buckling her into a carseat with a PEG, you try helping her become mobile with a PEG, you try finding close that work best with a PEG. We do this all out of the love of our daughter. So next time you want to mess with this mama bear, dont forget I have claws.

weekend fun and surgery follow-up

Friday night was kinda a chill night at home. We just hung out together. Saturday morning we got up and Brent got an email for a sale on jeans at Old Navy and I was in need of some. We quick got ready and headed to the store. After we came home and went over to our neighbor's party. Saturday/Sunday morning night Brent picked Dan up once he got back from his mission trip in Honduras. Sunday we went to Church and got to celebrate my cousin getting baptized. We then grabbed lunch quick, met with our awesome insurance guy and went to Carters. My mom and I ran to Target and Brent got corn. We had a yummy corn dinner (ok there was other foods too). We then headed home.
Friday Jillian almost flipped herself out of her rock-n-play so we decided it was time to move her out of it. Saturday morning we stopped at Bed, Bath and Beyond and bought an adult wedge pillow to put under her bed. Monday a bought a crib wedge to put at the foot of the bed because she was slidding down so much. It is helping but has not fixed the problem. Still thinking on that one...

Monday morning we went to the daycare to teach her teachers how to use her new pump. We figured out that when you turn off an Infinity pump and turn it back on it does not restart the feed. Once I figured this out and fixed it, the pump does not error at me in the middle of the night. The little quarks.

Yup, I eat giraffe

Monday afternoon we had a visit with the surgeon who placed her tube. She weighed 20lb 3oz with clothes and wet diaper. The med student then came in and looked at her site. The said out way of securing the tube was creative but works well. The surgeon then came in. He looked at it and said it was beautiful and that he was turning her tube care back over to GI. He said that she could switch over to a button style tube (less bulky) in two weeks. I was excited ny that because it is sooner then i thought it would happen! He said we did not need to see him again unless we decided to do the fundo someday. 

I did notice a poster in the room that advertised that they switched over to AMT buttons. AMT just came out with a cool new GJ button and from what I have read people are really liking it. Maybe they will have it and Jillian can try it out. 

Saturday afternoon I got a super sweet letter in the mail. It has been a while since I have gotten hand written mail land it was kinda fun! And it was so kind. It made my heart smile. 

Jillian is glad to have her uncle Dan home. She likes to smile at him. 

Monday night we had dinner with our gang:) It makes Jillian so happy to be around so many people that love her. While we are I let her play with a baby spoon. Even though she does not eat, I still want her to experience what it is.

For SPOON!

Sunday we I was blessed by talking to someone at church who has been so encouraging to me. I have been able to bouncy things off of her about feeding therapy and she is such a blessing to us. God uses twist and turn circumstances to bless His name and help us. Sometimes it is just crazy how it all works together. 

Well Jillian is sleeping and I need to also. School is starting soon so this is my busy time. Brent has a crazy project at work and is working a lot of hours.

Chilling in the stroller in Lake Geneva