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:

Christmas round 2 and Broncoscopy

Ok, Im going to go a little backwards here. I am going to talk about today first (Monday) and then go back to Sunday.

We got up nice and early this morning and loaded up the car for Children's. Jillian did not love getting up early this morning. We headed for Milwaukee and we got up their early and went to Starbucks for breakfast. Brent and I like to caffeine up before long days at the hospital.
We got to the hospital around 7:30am and got a prime parking spot. We headed over to 4th floor day surgery. It was very quiet in there. We checked in and after a few minutes of her trying to eat my coat we were called back to the same pre-op room as we were in for her first surgery in July.
They started with her med list that for some reason we can not get right in the computer right now.... We got her vitals while the different doctors and nurses came in and out to talk to us. The anesthesiologist came in to talk to us about the risks. I don't think he was expecting people that were so calm. He almost seamed bothered that were so calm. He explained to us that Jillian might need to be admitted and there was a small risk of her ending up in the ICU. We told him we understand that with anything we do with Jillian. He asked if we were sure if we wanted to do this before Christmas with those risks given that we could end up staying for Christmas. I told him we totally understood if we were there for Christmas and we were mentally prepared for it. We truly were prepared for that and it was the least scary part of the procedure. Her procedure was scheduled to start at 9:45 but by 8:50 they were ready and taking her back. She was not sure about the guy taking her back at first but then she was ok with it.
Brent and I then went out to the waiting room. This time we stayed in day surgery. Both of her other surgeries took place on the 3rd floor surgery. We sat in the waiting room. My mom got there about 10 minutes later. While we waited in the waiting room Brent talked with the gas company about fixing their mistake last week. The doctor came out about 30-40 minutes after it started. She said that her nose looked good, a little inflamed but good. She said her cords looked good and did not look floppy like we have thought might have been a problem in the past.
She said they went into her lung and they looked irritated like they were constantly irritated. She said there was also excess fluid in the lungs too. Both indicators that she is possibly aspirating on her bodily secretions all of the time. They took cultures and did a wash of the lower right lobe and took samples of that. They are sending all of the samples to the lab.
After about 10-15 minutes they came and said that one of us could go back and see her. I went back. She was screaming so hard we could hear here from the waiting room. I got back to the room and they were taking the heart monitors off of her. She looked at me and started crying harder. She wanted her mommy. After about 30sec I was able to hold her. I sat down in a chair with her and she curled up and closed her eyes. After a few minutes I could smell poop. I asked the nurse for a diaper and Jillian cried while we changed her. Jillian was doing really well. You could tell her throat was scratchy but she was comfy on my shoulder. A little while later the anesthesiologist came in and said that she was looking great and we would be able to go home today. They then let my mom and Brent come back and they transferred us to a different recovery pod that was our last stop before going home.
We got checked into the next pod and they did vital signs and such. We then cuddled. She went off and on from watching Daniel Tiger and Sophia the First to sleeping. She also hugged her new Doc McStuffins doll that we go for her for today because we are softies. They had us wait for an hour and then they did vitals again and decided that she was looking great and we were free to go. They took off her IV and we capped her ports (they had both ports draining to gravity into a diaper). Brent signed the discharge papers. As we were getting ready to leave the nurse came in with a little pretend camera for Jillian. She said this was the best week of the year to visit the hospital. It made Jillian smile so much to have a new toy. Thank you to whatever random stranger who donated that toy camera. I know a little girl who loves it a lot. It made me smile to see her happy.
The rest of the day she has been so sleepy but is having a hard time taking a nap. She will take a short nap but then wake up and cry/scream. You can tell she is soooooo sleepy. Normally she is in bed by 8pm but tonight she went to sleep around 8 and then woke up screaming about a half hour later and is now playing.
We had multiple things that we were invited to tonight however with it being so cold and Jillian being so sleepy we decided to stay in. When Jillian goes outside in really cold air she starts choking on the air. Strange, I know but that is how she handles it so we try to keep her in cold air as little as possible.

Ok, now lets rewind back to Sunday....

Looking at her new book

Brent got up early and worked on snow blowing for over an hour. We had a lot of snow. We took off for Church. We got there about 20 minutes late because of the slow drive. After church we went to Noddles and Company with my parent's and Brent's grandparents. They are in town right now from Florida. After lunch we went over to Best Buy and helped Brent's grandma pick out an iPad and a case. She has been talking about buying one for months to be able to facetime with Jillian.
Then we headed over to Portrait Innovations to do family pictures with Brent's family. Pictures went fast. Once we were done Brent helped a guy figure out how to tie a bow tie.
We left there and headed home. We called Dan and he put dinner in the oven. We got to the house and worked on getting dinner together. Shortly after we got home Brent's family all joined us to celebrate Christmas. We had dinner and watched the Packer game.
We did gifts. Jillian got a Sofia the First armchair that is her size. She also got a doll stroller and a Sofia movie. As a family we got a years membership to the Milwaukee Zoo. That will be nice because we can stop there for just a little bit if she has an appointment at Children's and it is not a big deal if we only spend a couple of hours at a time. I got my first ever Coach purse. It is a small clutch that is perfect to throw into the diaper bag when I am out with Jillian. Brent got an air compressor for projects around the house.
Overall it was a nice night celebrating. Jillian was so sleepy and by the time everyone left she was headed to bed. Once she was in bed we got the house picked up and the three grown ups hung out for a bit.

Chewing on her new pants

her food bag decorated for today

 So, what do today's rest results mean? Well it means that she is probably aspirating more then we realized. I have been worried about that since she was very tiny. You have always been able to hear her aspirating however no one seamed to believe me because she had one good swallow study.
What do we do now? Well, we find out more on January 6th when we see the pulmonologist again. We are really concerned that they are now going to push for a fundo. That is the surgery that we have been trying to prevent for months. It can make delayed gastric emptying worse and makes it substantially more likely that she will have a tube for the rest of her life. For her digestion track we don't feel a fundo is a good plan but we can keep hurting her lungs. I feel like we are having to chose between two organs. In the battle over stomach vs. lungs, the lungs win. Parents of a one year old should not be having to make the choice of one organ over another. We should not be debating the lesser of the two evils, but I have a feeling that is the choice we are going to be presented with. We always knew there was something going on with the lungs but we just figured it was asthma. Even though I knew this was what the doctor thought was going on, it is still hard to realize the facts. It is hard to admit that there is a lung problem bigger then asthma. Asthma I know how to deal with, this has a lot of unknowns to me.
One good thing we did find out today was that her lungs did not look like CF. That has always been in the back of our minds. We will know more definitively once all of the cultures come back but the doctor said that her lungs did not look like CF lungs. That is a large praise.
Tonight I am tired. I am hoping for a good nights sleep. She is having a hard time tonight at going to bed but I am hopeful that once she really goes to sleep and we start draining her tummy that she will get the rest she needs.
For the next few days I am going to focus on baby Jesus and family. I have always been a family person but this year has brought me even closer to them. This year has brought me to lessons from God that I did not even know existed. I have been stretched in ways that I did not know possible. I can't say that I have always made the best choices this year. I have not always used the right words, had the kindest thoughts, been the most loving but God is teaching me about all of these things; in my life He is using Jillian to teach many of these things. She is one cute vestal of God! The next couple of days I hope to take it slow, enjoy family, and most of all praise the God that has held us though this past year and will continue to hold us for the rest of our days.

Pushing her new stroller

In her new Sofia chair

We stopped at Starbucks before the hospital today so we could get caffeine and she could watch the business people walk in and out.

Grandma holding her

Cuddling with mommy

Watching Danial Tiger

Opening her birthday gift from Rasa

The new toy that the hospital gave her. THANK YOU to everyone who donates to the hospital. It really impacts families!

Doc McStuffins went into the OR with her so she got a name badge too!

Her trying to buckle her new bed

Pneumonia round....

So pneumonia keeps us hopping. Sorry for not posting an update for a few days... Here is a recap starting back at Thursday:

Thursday: Lazy day at home. Jillian and I hung out at home and she slept off and on and wanted to be held. I got some cleaning done around the house, in trying to get ready for her birthday party on the 14th. We did nebs every 4 hours.
In the morning I gave her the acid reflux meds. For one of the first times ever she did not want pink meds, which she normally loves. I ended up putting 1/2 of it in her g port because she did not want to finish it. Shortly after it was all in her body she started to reflux. It is normal for her to reflux her med. What is not normal was what happened for the next half hour. She coughed, choked and projectile vomited for over a half hour.  I have not been that scared in a long time. A little over 2 weeks ago she started vomiting stomach contents again. It has become more and more uncontrollable and in the past week she has not even been able to keep her acid reflux meds in her tummy. She has not had a bottle in over 2 weeks. She just cant handle it.

Sophia makes a good neb partner!

Friday: Doctor day! Brent and I gave her meds in the morning and 10min later she was puking all over our bed. I recorded it to show to the doctors. It is such a helpless feeling to watch her puke everywhere and there is nothing you can do.l It is even harder when you know that puking is causing pneumonia. We are not talking about a little spit up here. We are talking about ounces forcefully coming up. Her screaming in between puking and coughing. She looks scared and in pain. Once there is nothing left to come up she continues to cough and dry heave and gag. Once it starts there is not a great way to stop it.  
We started the day by seeing the nurse practitioner. My mom came and joined us. She listened to her lungs and said the one lung was sounding a little better then the ER report said (the ER dr had told Dan and I that they both sounded good....) and that the other lung did not sound any better then it had on Wednesday. She said we needed to go see Pulmonology at Children's and they wanted them to see her ASAP so they were going to see how fast they could get us in. We talked about getting more ned meds. Prescriptions can be such a pain sometimes. I then asked her about what the nurses were talking about in the Children's ER the previous Friday when they had a hard time cathing her. She took a look and said that yes the skin over her urethra was almost fused together. She sent in a script for some Estrogen cream. She also said that her yeast infection in her diaper area is back. We are just constantly fighting that. I think we are on our 2nd or 3rd tube of cream for that.
Then we had an appointment with GI at Children's. First one of Jillian's favorite people at Children's came in first,our awesome dietion! She said that Jillian gained more weight then wanted and she was not sure why. We can't have her on less formula a day then she is on now because then we run the risk of her being malnourished. She said she would go talk to the doctor and they would come up with a plan. The one of our other favorite people came in, the nurse. She asked us a few questions and then headed out. Next the doctor came in. She said that they had talked and they wanted to start her on something called Complete because her one test came back that she had dumping syndrome and  a recent paper was put out by the Children's hospital in Cincinnati saying that Complete is best for kids with dumping. Complete needs to go into the g port. At that point I stopped the doctor and told her g was not an option after how life has been at our house recently. I showed her the video and she got what I was saying. A child who has nothing go into their stomach each day other then acid reflux meds should not vomit, much less vomit for a 1/2 hour at a time. The vomiting should not cause pneumonia twice in 6 weeks. Once the doctor watched the video she got what I was saying and agreed that nothing could go into the g port other then meds that have to be digested in the stomach to work. She said that even though that one test came back showing dumping that she obviously has gastroperisis and we need to treat her for that. I agreed. She then did her exam and asked when the last time she had pneumonia was and I told her about Jillian turning blue on Wednesday. We then came up with a plan:
1. Each night Jillian's g port is now hooked up to drain all night. We are hooking a catheter bag up to her g port and everything that her body makes during the night drains into the bag. Jillian is on high doses of meds so that her tummy does not make a lot of acid however it will always make some acid and gastric juices and Jillian has progressed to the point that she can not handle her own gastric juices at night without choking on them refluxing. In the morning we disconnect the bag and measure everything that drains during the night. If it is more then 100ml (4 ounces) we have to call and they will tell us how much Pedialite to add to bag for the day to help make up for the lost fluid. So far is has been around 20ml of drainage, which is what we were expecting.
2. Jillian has been refereed to see a gastric motility specialist. We are very fortunate because there are not a lot of those and we are fortunate enough to have 5 gastric motility specialists in Milwaukee. Many families have to fly their children out of state to see a gastric motility specialist. We are being refereed to the head gastric motility specialist. I was able to get an appointment for January 6th.
3. They are talking about the possibility of gastric motlity testing. They did tell us however that because Children's is one of the few centers in the country that does gastric motility testing that there will be a several month wait. Once again we are very fortunate to have Children's so close because many families have to fly out of state to have this testing done.
4. We are going to keep her formula the same for now and see what her weight does. This is Jillian and her weight gain has always been unpredictable so we will see what the next month brings and then we will adjust from there. I have to bring her up the week of Christmas to get her weighted again. Some moths she gains too much for the amount of calories she takes in and other months she does not gain what she should with the amount of calories she takes it. She is very unpredictable with weight gain even though she gets an exact amount of food every day.
5. We are starting Jillian on Erythromycin continually. It is an antibiotic that is used for gastric motility patients for it's side effects. Most people get very bad diarrhea from it but in low doses for kiddos like Jillian it makes their system work more regularly. This is something we did not want to do, however she has gotten to the point where we have to do something. She is not pooping well except when she is on antibiotics. Her stomach does not seam to be moving much of anything and we are having a lot of vomiting. We have hit the point where we have to try it. We will see how it works. We dont take the choice to start this lightly, but having her on a continual low dose of antibiotics is better that her having large shots of antibiotics in her legs each time she get pneumonia. 
6. The nutritionist is going to talk to someone in the GI department that is in charge of helping with coverage of supplies. She is going to see if there is any program that would help with getting Jillian's formula covered. Our insurance has a small list of conditions that they will pay for medical formula for. Jillian does not have any of them, thankfully because most are fatal, however Jillian's food is around $15 a day at this point and the price will just continue to rise. Not super hopeful but we will see.

Overall GI went really well. We were there for around 2 hours. We are normally there around that amount of time. There are so many people in and out of the room doing things and talking to us that it does take a long time. Each of those people love Jillian so much that it is a comforting place to be most months.
We also got a call back from her pediatrician's office. They were able to land us an appointment on Monday at 2:30 with pulmonology! They wanted to make sure she gets listened to now. Especially since we have gone though almost 120 vile of neb meds since August and I just picked up the next box this week.
In the evening I went and picked up Jillian's meds. Her med to help the skin separate by the urethra was $60, I about had a cow until I found out that before insurance it is $200. She is one pricey little girl!

Uncle Dan's Christmas gift to Jillian. A shirt that says "Size Matters Not" with some of the coolest creatures from out of this world!

Saturday: She was super fussy! She did not really want anything or to do much of anything. When she got up she did not want her meds in her J port, she did not want to get undressed, she did not want to get dressed, she did not want her Farrell bag taken off of her g port, she just was not having all of the normal morning stuff. She cried for over 3 hours in the evening. It took her until after 11pm to fall asleep. She would just about be out and then there would be the slightest noise and she would wake up crying. The trick that finally got her to fall asleep... me laying down next to her bed and we watched the Cosby Show. The hard part for me was the episode was funny but if I laughed she would wake up.

Sunday: It was snowing hard in the morning on our way into Kenosha. We dropped Brent off at Church and Jillian and I headed to my parent's house. We did not want her exposed to extra germs. We are trying so hard to keep her healthy already and winter has not officially started yet. She hung out at their house most of the day. After Church Brent went to an Aurora Quick Care because he has not felt good for a week and his nose junk turned green over the weekend. He has a sinus infection and his ear drums are red. Mom and I went and picked up food for next weekend and got Brent's antibiotic. Then we made the drive home in the snow. Instead of 55 we went 35 all the way. The roads were kinda yucky but we made it home safe.

Early morning neb by the tree

This week has been a little emotionally exhausting for me. I guess I would not be human if it was not. I mean my kid turned blue twice, has pneumonia and her GI track is getting worse. Strangely the GI part is the hardest for me. Yes, her turning blue was scary,  but Dan and I were able to handle it. Yes that ER dr made me mad, but middle of no where hospitals are not known to be the best and I guess I can't expect Jillian's level of care there. Yes, it is frustrating that Jillian has pneumonia again but I said two weeks ago that it was coming. I knew when the vomiting started at that intensity again that we were headed down the same path. I called every doctor that I could on Jillian's case to try to stop it but no one could. But for me the fact that we are having to go the next level of care for Jillian's GI problems just makes it all real. I know I live this day in and day out but for us it is life. I sat and watched a 3 month old take a bottle this weekend and all I could think about was that Jillian was that age when she got her first tube and by 4months she went to just water by mouth. I knew that some of these things might happen when we went to GI on Friday. I knew something needed to be done. We could not keep going like this, but admitting that you have to go to the next level of care is humbling. I am grateful though that we have this option for care. As I looked though the World Vision Christmas Catalog this week all I could do was cry. Partially because I feel so passionate for some of those causes (the only time I ever got sent to the dean's office in high school was because a girl and I got into a fight over the existence of the sex trade, interesting story...) but also because as I looked at the needs in other countries all I could think about was how if we lived in MOST other countries in this word Jillian would be dead.  She would have starved to death because she could not get the nutrients she needed or aspirated on reflux and died. That is hard to think about. My heart longs for the moms in other countries that are not able to save their child like I was able to with Jillian. I can only imagine the heart break. It's not fair. That simple. Not fair. A part of me was mad that I was able to get Jillian the help that she needs but they can't. The "why me" thought came to mind. Why am I fortune enough? And then my heart went to praise. I'm fortunate enough because God blessed me in that way. I don't know why, but I know who did the blessing, and it is my job/right/privilege/honor to praise Him. So while I might me exhausted after this week. While the thought that tomorrow we add another specialist to the circle is exhausting, we are blessed to have that option! 

The dump truck makes haling her bad around easier :)

Reflux cough

Reflux cough, why must you come? 

Her reflux is defiantly worse with the cereal in. I'm debating if we can do this three more days. 

Last night she was more reluctant to take it and spaced her bites even farther. It ended up being over 10min, which is the ideal length of time. We were at my parents and had my grandma over for dinner. I fed her in her high chair just before we all ate. A few minutes into us eating she started arching her back a lot and fussing. Normally the rule is that she needs to stay in her high chair while we eat but I just could not make her when I induced the pain. 

During the night she started coughing. By this morning again she was coughing A LOT and you could hear her tummy refluxing. I vented her again. We use a 10ml syringe and I filled it to the top with liquid and air. You could see grains of rice cereal still in the mix of tummy juice. The past few days when I have vented her or has been white and clear. Today it was neon yellow. About 20min after I vented her, the g port popped open and at least another 10ml came out all over grandpa, her backpack, herself and the floor. It was thick and nasty. 

I could not get her cough to stop though after we got the gunk out of her tummy. It switched from a reflux cough to an irritated lung way cough from having coughed so hard. I gave her a neb to help with. She took it well. 

Today at church she kept coughing and then she would cry. We ended up just hanging out because you could tell she was trying hard to be quiet but it hurt. She kept throwing her head back. She is smiling right now when she is not coughing or trying not puke. 

Grainy

We have done two more times of 5ml of milk on the spoon and then 10ml of milk mixed with cereal. 

Here is a message I wrote to a friend about Thursday's feeding:

Her second spoon feeding ever. She did about the same as yesterday. She starts good and about 1/2 way through she starts shoving her passy in her mouth after every bite and sucking hard. She is willing to eat til the end of the food but she spaces out bites really long. We were sure she was going to puke on us about 3min after finishing eating. She started heaving but was able to keep it in. She cried off and on after. She did give a good burp though after eating today which she did not do yesterday. Her breathing is loud now from the reflux and is coughing. I'm excited though that even though you can tell it hurts she is still willing to keep trying. She is such a fighter.

Last night she took it pretty well too. Towards the end she was interested in most things other then eating and would not look at the spoon at times. She was sloppier with eating and more of it came rolling out of her mouth. By the time she was done she was arching her back a lot and coughing. She did not want anyone but her mommy. The coughing continued through the night and got nasty sounding. her reflux cough is distinctive. This morning when she got up she was still coughing and you could hear that her vocal cords were full of puke. I decided I would vent her because it is just not good to still be refluxing 12hr later. I hooked up the syringe and 6ml of air and fluid came out. In the fluid was little grains of the cereal still. It was still sitting in her poor tummy. There was some stomach acid and flem mixed in too. The cough has gone away again and her breathing sounds better. 

Is it weird though that she smells "normal" to me with the smell of puke on her breath? That she almost smells funny when she has not been refluxing. I guess I'm ok with her not smelling normal though, it is just strange to me though on days when she does not smell like puke. Today however is not one of those non puke smelling days. 

I went to change her diaper earlier and noticed little dots in her diaper area. It looks like the rash that's on her tummy. The tummy rash has come and gone this week. Today her tummy is not red but her skin feels like sand paper. I gave her a bath. We will see if it helps. She ended her antibiotics Wednesday so we will see what goes on now. Those antibiotics helped her poop though. We were able to go down .3ml of laxative this week. I know that does not seam like a lot but for Jillian it is. Her poop was kinda like sandpaper at times though too this week. Today she has not pooped yet which tells me the antibiotics are out of her system, I'm just hoping it is a smooth transition back to normal laxative poop. 

Its a GI problem

Today Jillian and I went up to Children's clinic on Moorland road to visit a feeding therapist for an evaluation. She had not had a feeding evaluation since she was inpatient in April so it was time to look at it again.

When we first went in we went over the Jilli health history. She looked exhausted just hearing it :) Then we talked about what Jillian does for taking food by mouth (1 bottle once a day of 15ml breast milk). She said she wanted to see how Jillian did with a spoon and with breast milk on a spoon.
Before we started with the spoon the therapist first tried with putting her fingers in Jillian's mouth. She was receptive to it. She felt around her mouth a few times and tried a few different things. She said that her oral motor skills looked good for never having finger food in her mouth. The only thing she did not do was move her tongue to the side of her moth that the finger was on, instead she always left it in the middle of her mouth. She said that was not a big deal though because currently Jillian had never needed to use that skill so her not doing it was not surprising.She said this showed Jillian was not ready for any finger foods like puffs.
 I had brought with one of the spoons that we have at home that she plays with while we eat dinner. The therapist put 5ml of milk in a cup that she spooned out to give to Jilli. At first she did an amazing job of eating the milk off of the spoon. She would put her top lip down and take it like she had always been eating that way. The therapist was really impressed.
Then She mixed a little bit of rice cereal with 10ml of milk. Jillian took this off of the spoon nicely too. She became less coordinated with it as she went on but for her first time spoon eating she did great. The therapist said she was really impressed and was not expecting that at all. Also as eating went on she went farther and farther between bites and would put her passy in between bites, which is Jillian's signal that it hurt, but she kept on trying her best. After she finished eating we let her sit in the high chair and we worked on updating things about her eating into the computer. This is when Jillian started to have a hard time. She started to reflux about 3 minutes after she finished eating. She was sucking that passy 100 sucks a minute, her arms and legs became stiff, she was bright red and she would intermittently yell out. It would be bad for a few minutes at a time and then she would calm again. She was trying to rip off her bib so we took it off for her and let her hold it. She wrestled with the bib like it had just tried to steal something from her. You could her hear refluxing, gulping, and her vocal cords sounded horse. Her breathing became more labored and varied from fast to slow. 
After about 20 minutes we decided it was time to show off her bottle skills. She spit out her passy like she is suppose to when I brought the bottle to her. She would not hold it but did a great job drinking it, in about 45seconds, which is a normal time for 15ml of milk. After the bottle was over I sat her up. After about a minute she started to reflux. It was like trying to hold an unhappy monkey. She was all over the place and very hard to hold because she was trying to get comfortable. She was sucking on her passy a lot, making swallowing sounds, and throwing her head back. From they was she looked at times you would have thought the ceiling was very interesting.
The therapist and I then talked. She said it pains her to see how much pain Jillian is in when she eats. That she has great oral motor skills and defiantly does not have an oral aversion. She then said she was unsure of the next steps. That a part of her almost said to not have Jillian eat by mouth anymore because she was worried that one of these days an oral aversion would form. That was the eating by mouth worth it? That because she has such great foundational skills that if she was able to eat later on without pain that it would be a lot easier to regain these skills since she already has them, then to fix an aversion problem. We decided that since for right now she is still willingly taking the food that we would keep going with it. We decided that we would try spoon feeding her 5ml of plain milk and then 10ml of the milk mixed with rice cereal for the next week to see if it made any difference. It did not in clinic today (it was almost a worse reaction) but that we would try it. She suggested staying with the 15ml because that is what has worked and we don't want to up the volume and change the form at the same time because then how will we know what went wrong if something goes wrong.
We also decided that staying with the stage 1 bottle nipples were best because she is sucking them perfectly and we don't want to mess with something that is working. She said that for now it is best to stay with just the milk and not add other things (except the rice), especially if we might be taking food away if she starts to struggle with the pain more and because we dont know of any possible allergies and we don't want to add problems. She said that Jillian is not a kid that we would be working on taking the passy away from anytime soon because it is a coping method and is helping her in dealing with the pain and in keeping oral motor skills.
She said that we did not need to come and see her again anytime soon but she is a resource for us and is here to help us in any way. She said to let her know how the next week with the rice goes. She said she would put a call into the GI about the visit.

Overall today would be a middle of the road reflux day. By no means was it her worse, but it showed them what a little taste of Jillian's tummy troubles where like. 

After we finished Jillian and I went across the street to Target to buy rice cereal. While we were there she was not her normal talkative smiley self. She just sat there, dazed.
Once we got home I changed her diaper. She had pooped out of it. She is not pooping out a lot right now but it is coming out with some force behind it causing most of it to be out of the diaper instead of in. While I was cleaning her up I noticed the inside of her g tube looked nasty (its clear) and I had just flushed it with clean water this morning. I hooked up a syringe and vented out 8ml of tummy contents. There looked to be some grains of rice cereal still in there from 11:30 and it was now 2pm. Yummy! I then flushed her with 3ml of clean water. She has been kind off all afternoon. She has been throwing herself around and not wanting to play. She has been having episodes of reflux too.
Also while I was changing her I noticed that her rash is coming back. It is looking better again this afternoon. I'm not sure what these little bumps are. Maybe just another mystery of Jillian. Hmmm....

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... :)

GI 8-13-2013

I'm going to start this off by apologizing if I sound crabby in this post. I am kinda in a crabby mood today. I have weaned down a lot of my milk production and that comes with a return of some crabbiness... I'm trying hard not to be crabby and be grateful for everything I do have... somedays bodies just get in the way.

As Jillian and I were walking out the door this morning she was dry heaving and then puked yellow again. She made some puking noises in the car too. She rode to the appointment in yellow stained clothes. But at least that gave me something to show them...

in the jumper that she rocks in

The basics:
Weight: 20lb 4.7oz
Height: 26.65in

The site:
The GI dr agreed that the site looked good. There is a little gradulation tissue that has formed (we noticed it Wednesday night) but she is not worried about it because there is so little. She said otherwise it looks really good. She said the site is a little red but that is a mix of healing and being in contact with tummy juice.

Dressing:
She looked at how we had it wrapped and said that she had a better way. She had this stuff called Sepro Net that is better then the Ace bandage going around her body. She said that a wrap can cause compression but that the new stuff holds everything in place without a squeeze. So far I really like it. They gave us two pieces to try and we are already down to one because she had a blow out poop this afternoon. We will probably look into getting more.

with SePro Net on

Meds:
Since Jillian has gained weight again she needs to go up on meds. Instead of taking 1.33ml of acid reflux meds a day she will now take 1.66ml. I'm sure she will be happy. The nurse was going to call in the order to our mail order pharmacy.

Yellow puke:
The dr said the yellow puke is stomach juices. She said that unless she is puking them every day we should not worry. She is currently puking them 2-3 days a week. I was liking this not puking thing. I'm not a big fan of yellow spew!

Pee:
We talked about the fact that Jillian does not pee during the 6 hours that she is off the tube. She said that is fine. I'll take her word on it.

Feeding Schedule:
For the next month Jillian will stay on the same feeding schedule she is on currently.

Testing/Emptying:
I brought up that one of the last times she was inpatient they talked about a test for delayed gastric emptying. She said that Jillian puking gastric juices and the fact that she pukes so long after she eats proves clinically that there is delayed gastric emptying. We are going to go ahead and do the test for numbers. We are going to talk about ways to help the emptying next month. One thing she is talking about is putting her on erythromycin (an antibiotic)  long term because its side affect is speeding up gastric emptying. A part of me is nervous about putting her on an antibiotic long term. This part for me today was huge. It gave a little more of the puzzle and it is something I have suspected for a while but no one has confirmed. Gastric Emptying does not have a quick fix especially with kids like Jilli.

Tube Change:
We talked about what surgery had to say about the site. The dr. said she would put in an order for a tube change. I called IR after we left and they said that nothing in the notes said they could do the tube change this early post op so they needed to call the surgeon and double check before scheduling anything. I am waiting for a call back.I want to try to schedule the tube change and gastric emptying test for the same day since they are both done in radiology.

"Blank" Time:
I completely forgot to ask about this today!I left a message for the nurse asking her about it along with asking for more of the netting. I'm not sure what they are going to say. My guess is that we will just wait for them to hopefully get better... They are not there unless she eats or is refluxing a lot.

Tastes:
Jillian is going to get to start "tasting" baby food. When I say taste I mean an candy button sized amount of food a day. It is not for caloric value or nutrition, it is just for Jillian to begin to know what other things taste like so if one day she can eat she is know what food other then milk tastes like. I'm excited she gets to taste but a part of me is worried. With all of my food allergies, introducing foods to Jilli might be interesting. I guess she really wont be getting much at all at this point so I should not worry... right? I'm still not sure how to start this tasting thing...


I think that is most of the appointment. Today I needed to run to work and get the several hundred dollars of medical supplies I forgot there... ops! Also after the appointment we walked the mall and went to Buy Buy Baby to exchange the sun shade we bought Monday for one that actually worked. I am liking the new one better already and I think Jillian's eyes are too!

I have ALL the toys!