Feeding Team Eval

Friday was Jillian's eval with the feeding team. If you have not been following for a while here is the back story:
Head of GI decided that we needed to go to feeding team despite our thoughts on the situation. Our other appointments with GI were all cancelled (NOT by us) and we were told we had to see Feeding Team before we did anything else. To say I was annoyed was an understatement. Feeding Team's goal is to get kids that are SAFE to eat off of their feeding tube and eating normal food. They do this with a multidisciplinary approach and it is a great tool for kids that are at that point. We are no were near ready for feeding team with Jilli. She is still not safe to eat. For the past few months I have been stressed about this appointment.

My mom came with Jilli and I to the appointment. We got up there and I have to fill out more paperwork. They brought us back and measured Jillian. We we visited with GI back in May Jillian was
21 lb 1.7 oz and 75.4 cm. Friday she was 21 lb 1.6oz and 76.6 cm. (ie, no real growth in 3 months...) Jilli is looking more mature in the face so people keep telling us she looks like she is growing however she really has not.
We then went back to the feeding team room. It is a large room with a kid sized round table and an adult sized round table. It also has a lot of high chairs and cabinets. The first round of people came in. First we meet with a Speech and language path (same one who did Jillian's swallow study in June), an nutritionist, a psychologist, and a nurse.
Their first question was "What is the goal in bringing Jillian to feeding clinic?" My first response wanted to be "to jump through this stupid hoop that your boss is making us jump through so I can get the best care for my child because she really does not belong in this clinic..." but I took a deep breath, looked at my mom and said "Our goal is always that someday Jillian will be able to eat by mouth but what is most important to us is that she is SAFE to eat by mouth before we push it." They found that an acceptable goal...
We then discussed Jillian's case in detail. At the end of our discussion everyone made their recommendations.
SLP: You can try to do tastes (ie, dip a spoon in baby food and shake all of the food off so only the taste is left on but she can't get any volume) but only when it is safe and at our speed. She said Jilli is not safe to eat volume orally.
Dietician: Jillian has not been handling the goal of bumping her up to 61ml/hr. Since that is not working we are going to try mixing her formula to 22cal per oz instead of 20cal. We are hoping that she tolerates this change. Other then cal changes being hard on her pooping, she normally reacts to them well.
Psychologist: We are doing exactly what we should be. We are making the experiences with Jillian's oral med possessive and we have worked hard to keep her from developing an oral aversion. She said we are right that keeping her airway protected is most important right now. She said that she is there if we need her someday but right now is not the time for this.

Then everyone left to go meet with the Dr. (head of GI guy). Once they were done meeting they brought us to an exam room across the hall and we meet just with the dr. He shook my hand and said that he did not think we have ever met before. (insert a ton of emotions here that I kept inside my head). I reminded him that Jilli is the reason he had to listen to the theme song of Daniel Tiger's Neighborhood for over 30min one day. Then he remembered us.
He said with the conversation about muscle disorders and that she is not safe to eat that this was not the clinic for her (insert a momma who had to just smile or the sarcastic comments about this situation were about to go flying out of her mouth). He also said that some kids with muscle stuff only get worse with their GI stuff and that this clinic is here if we need it someday but that we might not. As hard as that is to hear it is a realization that we have already come to, it is just nice to see that he has finally gotten there too. We want our kid to eat but we have seen what has happened to her body since she has been born so we need to be realistic in order to give her what she needs.
He said they are transferring us to different clinic. The airodigestive clinic. It is a multidisciplinary clinic were an ENT, pulomonologist, GI and SLP work TOGETHER for kids with GI and lung problems! This sounds like where we should have been for months. In the end jumping through this hoop is going to get us better care for Jillian and in the end that was my goal.
They decided that we would be seen in the airodigestive clinic once every 6months (starting in September) and then see our NORMAL GI dr each month in-between! To me this sounds like the best of both worlds! We get to go back to the dr we like and get to work with a team that specializes in kids like Jilli. The only snag in this plan was that a dietician does not work in the airo clinic and a dietician needs to see Jilli next month because we are making the changes to her cal count.
The nurse came into the room and said that mom and Jilli should stay in the room and wait for all of the paperwork that they needed to give us and that I should go up front to make a separate appointment. As I was walking up front our favorite nurse was about to enter someone else's room. She and I stood and talked for a minute and then she wanted to see Jilli. We then went and found Jilli. She talked to her for a little bit and then decided that we needed to go see everyone else. See Jilli is well known in the GI department. A lot of different people have worked with us and she steals their hearts. Our nurse took off with Jillian in her stroller down the hall. We left my poor mom sitting in a room alone waiting for paperwork. Jilli and I got to go in the offices to see different people that we knew. Then someone found us with the paperwork. We talked for a minute and they said we could go make the appointment. My mom found us and we headed to the front desk. There was a new receptionist and she was having a hard time making the appointment with the dietician so our dietician ended up coming up to help.
We left there and headed down the elevator. As we got out of the elevator on the second floor there stood our old dietician who we have a great relationship with. We stood at the elevator and talked for a while and then a different GI nurse came by and we all stood there and talked. It was just one of those days were we ran into all of our favorite (except our normal dr and favorite receptionist) around GI. The GI department LOVES our little girl. Many of them would bend over backwards for her and many have. From personally carrying Jillian into the OR so she is not scared to taking time to really listen to what we are saying, the support staff in GI is amazing. They are the ones that have made Children's feel more like home to us and they truly care (to the point where I wrote many of them thank you cards and Jilli is known as the little girl's picture who sits on desks all over GI).

We then headed to see my cousin Luke. We ran into them on Monday when we were up at Children's and he was still stuck there. We visited with him and his mom for a while.

We then went to Cheesecake Factory for lunch and then stopped at the zoo to ride on the train (we promised Jilli we would take her on the train for how good she had been) We stayed at the zoo for a couple of hours and then headed to Target to pick a few things up. We then headed back to my parents.

Jilli and I have been staying at my parent's for a few days. Dan has C. Dif. It can be very contagious and  deadly for kids like Jilli. I have had C Dif in the past making me more likely to get it again (I got it from contact with someone who had C. Dif, I had not been on antibiotics or in a hospital in over a year when I got it.) I contacted my doctor and he said that once the house was scrubbed top to bottom with bleach that Jilli and I could go back home. Brent has been working since Thursday to get the house clean enough for us to go home. I am really hopeful to go home soon. Please pray that none of the rest of us get it and that Dan starts to feel better quickly.

I want to thank all of the people who were praying. I sent out a couple of texts Thursday night asking for prayers about the appointment and for the C. Dif situation and we were covered in prayers. I am so grateful for the people in our lives so stand by us and pray for us, offer encouraging words, or let us crash at their house randomly because we can't go home. I am so grateful and we are so fortunate that God has provided some amazing people in our lives! This is not an easy road but God is good and He provides what we need.

PH probe and motlity testing resluts

As promised, here are her results about her testing last week at Children's. I got the call on Tuesday however we had people over Tuesday and Wednesday nights and Jillian has been up late and then up multiple times during the night all week. (last night she tried to pull her tube out in the middle of the night, I woke up to her pulling her extension set, thinking it was her passy holder... yeah thats not a nice wake up call) 

PH probe:
This is the test that measures reflux that comes into the throat. Jillian refluxed 69% of the time in 24 hours! The doctor said it should be less then 10%. They said 69% is really high. They questioned if the probe was in the correct place however the x-ray they did showed it was in the exact right place. They asked if it moved during the test. I told them that I taped it myself (and a good taping job if I say so myself) and the floor nurse measured it every few hours. It did not move, at least not from where it was outside her nose. They are thinking we might need to repeat this test to see if it comes out with the same results the second time around. That would mean a second hospital stay. We will see what they decide about this. While I don't wish for her to be refluxing 69% of the time, that would really explain some of the things that we see. (Is it bad that I am grateful that this test did not come back "within normal limits" because that would have sent us into an even more confusing spin) The doctor and I did agree though that a fundo is a last ditch effort and not something we want to do right now.

Motility testing:
During the test they told us that she obviously had a motility disorder, and then the head of GI came in and said that they thought they were viewing the wrong leads on the screen and while the test is going they can't view the other leads, however the data from those leads are still being saved so they can view them later. Upon further review there was not a problem in the small intestines like it originally thought. It had rithmic contractions like normal. The one thing that did show up strangely was that her stomach did not respond appropriately to food! BINGO! They said that maybe it was because there was not enough food in there however 55ml went in and they added oil to it to make it higher in calories. When she did take bottles daily, every 2 hours (over a year ago), they were only 45ml, so this is a larger amount then she has had in over a YEAR! They said that maybe we should try pushing her stomach to see what it would handle.  I then told them that it was not an option because apparently 55ml is enough to cause a miroasperation because we were now treating her for that from this little test. I explained to them that while Jillian did not puke during this test (amazingly) she did reflux a lot (this was the day after she refluxed for 69% of the day). I am not going to kill her lungs by trying to push her stomach. It was then decided that was not an option. The doctor said that makes Jillian a more complex case. She said that maybe we need to get all parties involved to meet. I would be game for that.

Outcome:
They want to start her on a new med called Cyproheptadine and take her off of her Erytho. I have now gone into detective mom mode about this med. With all of the other med changes we have done, I have know about the drug before hand. I have researched it and was knowledgeable about the medication however I had never really heard of this med before. As for most meds used for gastric motility, this is not the med's main goal. Motility meds tend to be meds for different things that have a side effect of gastric motility. With using a med for its side effects, you get.... all the other side effects, and the main effect of the med. Joy. This med can have some interesting effects. The main one is that it can make someone very sleepy... or stop sleeping. It also is used to increase appetite. This is one of the things that worries me because some people have said that their child gets so hungry they try to eat anything, even kids that medically can't eat. We will see. It is also controversial to put a child under 2 on this med and Jillian turns 15mo tomorrow. We will see. This next week we meet with GI and her primary doctor so we will see what everyone has to say then. We held off to start it until tonight because I don't like to start a new med and then send her to school the next day. I want to see what is going on and how she is responding.
They also asked us who we would like to keep as our main GI doctor (our current doc or the motility specialist). I, as respectfully as I could, said that we really wanted to stay with our current doc. There are a lot of things that go into that choice, but I was so happy that they gave us that choice!



On a side note about Jillian's microasperation adventure... her cough is still here. The sound of it changed. I am debating if I am going to call the doctor tomorrow or try to wait it out until her well baby check next week. At one point today she coughed for almost 5 minutes straight. The cough is starting to sound more and more like the cough she had this time last year when she was admitted for what they thought might have been whooping cough. She also cried almost all day today. If you know Jillian, you know that is not like her at all. We will see what tomorrow brings...

  

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:

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

On a cold cold day in January

Sunday night Jillian and I spent at my parent's house since my mom was coming with us to Children's on Monday it was just easier to be there. Monday morning we got up and packed up all of our things and took for for Children's around 10am. The lovely billboard on the side of the road read -10. BRRRRR! We packed the car with blankets and emergency things in case anything happened to the car. The drive up was smooth. The only car we did see in a ditch was a police van. We made it up to Children's around 11 and mom pulled up to the skywalk entrance and let Jillian and I out so we only had about 10ft to walk outside.

GI: First we went into the vitals room. They could not get a blood pressure but that is not uncommon for her. They did her weight. She lost more since her procedure on the 23rd. She is down to 9.76kg. Her length is 28.3in. Last month she gained more then wanted and this month she is loosing weight and she is on the EXACT same feeding schedule. Oh Jillian!
We then went into the room. The nurse came in and looked at her tube site.
The a fellow came in. She wanted Jillian's health history. I think we exhausted her! After we gave her the big stuff she left and talked to the doctor.
The doctor came in. I like/was frustrated by him. A few of his comments irritated me. He said that babies Jillian's age spend 2 hours a day refluxing. I know a lot of one year olds and I don't know any of them that spend 2 hours of their day refluxing like Jillian does. He also said that some kids reflux because they are board. He said that he doubts that is Jillian's issue. Yea.... I don't think she was born board, and if you ask me she does not spend much time board.
He did agree with me that if she has delayed gastric emptying that we do not want her to have a fundo because that could make her tube dependent for the rest of her life. It was a big relief for me to hear his view on this.
We decided that we need to figure out more with how her stomach is working. To do this we are going to do a PH probe study and gastric motility testing. There is about a two month wait to get on the schedule for the tests so it will probably be at least March before she get in. For the tests we will be spending at least a night up at Children's. They are suppose to call us when they get insurance approval for the test and are able to get her in the schedule. My biggest fear is that this test will come back normal so they will say her stomach works fine. I can tell you now it does not work fine. That scares me a lot right now. I know of multiple children who have had this test come back within normal limits but like Jillian their food sits in their stomach forever. As strange as this sounds I am praying that the test picks up the abnormalities of her stomach.
He and I disagreed about her lung issues. He said that it did not make sense to him that she is refluxing that is why she is getting pneumonia. You can hear that is what is going on. You can watch it too. He said that we would have to see what pulmonology had to say.
He said that he wanted her to see speech again because he did not want her loosing her skills. There was some confusion with who we had seen for speech before so I made a phone call today to figure out what we need to do. I do not regret our choice to take bottles away from her. I still fully believe that it was the best choice for her lungs at the time. We had multiple doctors and a speech pathologist from Children's that all stood behind us on it and it was the suggestion of many of them. I don't think this doctor agreed, but I don't really care. That was a choice we made looking out for her overall best at that time and I'm not sorry for it. I know it will take more work at some point if she is able to eat, but we knew that when we pulled the bottles away back in November. 
He was not positive that she has a motility disorder. He said that it still could just be reflux. As she gets older a part of me wants to still believe that this could all just be reflux but then a part of me needs to give that up. This is not typical reflux. Yes, many babies have reflux and spit up. I see kids that spit up. I work in a day care and have for almost 2 years. I have baby sat kids that have reflux. This is not typical reflux. I'm not sure why I get so defensive when people suggest that this might just be reflux. Maybe because they are not looking at the whole picture that I see. Maybe it is because when people say its just reflux I feel like they are invalidating everything we do. Kids with reflux don't puke hours later. They don't have food still sitting in the stomach from 12 hours before.  

In between the two visits of the day we hung out around the hospital. We went down the the cafeteria and had lunch. Jillian was not a big fan of it down there. She kept yelling. We went back to the first floor and hung out by the big fish tank for a while. She love that and she loved pointing at the fish when other people came up. Then we hung out in Cafe West for a while and she watched Mickey Mouse on my mom's phone.

Pulmonology: This is where the cold hit! It was so cold in there that they gave her a new quilt. It is beautiful and it kept her warm in that freezing room. They took her pulse ox and it was sitting between 97-98%. They left the probe on for during the appointment and she wanted to take it off so badly.
First we visited with the nurse. Then a really nice nurse practitioner came in.We chatted with her for a while and she listened to Jillian's lungs. She said they sounded really clear. She said that she had talked with the doctor and they wanted to put her on QVAR. It is an inhaler that Jillian will take twice a day with a chamber and a mask. It will hopefully help to keep the inflammation down in her lungs. The goal is to only have her on it for a few months but if she needs it longer so be it. She said it is hard to tell at this point if her lung involvement is all reflux induced, or more asthma induced or a mix of both. She said time would tell and treating it this way helps with both.
The doctor then came in. She said that there were a couple of cultures that did come back positive from her bronchoscopy. She said they were all viruses and things that hang out commonly in the mouth and nose and if she is aspirating reflux it would be common for them to then end up in the lungs. She said that there was also a protein in the cultures that is only made in the digestive track so the only way for it to be in the lungs was for it to be refluxed and then aspirated (this makes me want to go HA! to the doctor in the morning). There are a few cultures that can take up to 90 days and they will call us if anything comes back on those but it is very unlikely. 
They said that they did not need to see us until late April! Then the nurse came in and got us the air chamber and mask for her inhaler. In addition to the QVAR inhaler they also sent a script for an albuteral inhaler for us to carry with her in the diaper bag incase she needs it. They told us to keep doing what we are doing with giving her nebs when she needs them and to call them if anything big happens.

On our way out we stopped at the Skywalk pharmacy at Children's to pick up her Erythromicin. They are able to compound it differently then our local pharmacy so it last for 35 days instead of 10. They were also able to give me an empty vial with the label on it so I can fill that one for daycare and then I don't have to take it back and forth every day. It is so nice using a children's pharmacy because they understand requests like that.

On the way home I got a text that her inhalers were ready at Walmart so on the way we stopped there. My mom and Jillian stayed in the running car while I ran in fast.

Last night we had Jaime and Jason over for dinner. That was just what I needed after a long day. They lift my spirits so much. Jaime and I were talking about the doctors appointments and I was telling her about the motility specialist questioning if this is a motility disorder. She said that she had read the blog post before this one and read the article about the mom with two kids who explained the difference between reflux and a motility disorder. She said that as she read it she could tell that Jillian had all the symptoms of a motility disorder and that it was pretty obvious and that she was amazed that there was still question. That did my heart good to hear someone else say that because sometimes I question myself. I know what all of her symptoms are but I try to think of it all in the best light and convince myself that it is not that bad, when in reality Jillian can't eat. She can't sustain herself.

So now we wait for a phone call to see when the tests will be. We wait for a phone call from speech to find out what the plan is there. So far I am not too anxious about the wait because I am grateful that we currently have a plan... however it is only 24 hours out :)


Thank you to everyone who prayed for our safe travels yesterday in the cold. They meant a lot to us. Thank you for the prayers of peace yesterday. Days like that are long and draining. Thank you to my mom for going with and holding Jillian while I talked with doctors and jumped in when they did not hear what I was telling them. Thank you to everyone who had kind word for us or liked my pictures of us hang out on facebook. Just Thanks!

I like to chew on gears!

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