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.

Swallow Studdy

This post has been sitting open in Firefox for a week with just a title and a blank body. I have stared at the big blank white box multiple times however unable to write a word. It is not that I did not have something to say, it is that emotionally I could not do it. So here I sit, a week later, making this big box a little less white.

Last Thursday Jillian had her second swallow study done up at Children's. We had not ask for a swallow study, the head of GI decided she needed one because he wants to move forward with feeding clinic. A swallow study looks to see if a person can safely swallow when given food. It is done with X-ray and watches to see if food goes down the esophagus or the trachea. Jillian has never had a problem with swallowing the first time something goes down. Her problem comes in when she refluxes her food back up; then she aspirates on it while food is trying to go up and down at the same time.
I am pretty positive with this study the head of GI's goal was to prove that she is safe to eat. Despite what multiple other professionals at Children's and Aurora has told him, I think he still does not get what is going on with Jillian. This study for Jillian proves nothing. It is is only a couple of minutes long and only looks at the initial swallow.
Last Wednesday night I was filled with anxiety about the swallow study because:
1. I was afraid (and still am) that despite that her issues are with refluxing foods, that from a clean swallow study he would say she is safe to eat and try to push us to feed her orally even though that is not what is best for her and will lead to pneumonia. Multiple other professionals agree that she is not safe to eat.
2. For a swallow study Jillian has to drink barium. While she is fine with drinking it, I was afraid of what it would do later. Her getting sick from aspiration is hard on everyone, especially her. We try our hardest to avoid her getting things in her mouth and to think about giving her something on purpose is hard to wrap my head around.

My mom went with me up to Children's for the test. We got in the room and started talking about the test with the speech path. I liked her a lot. She agreed with us that Jillian's medical history proves that there is some underlying medical issue going on and that it would be super helpful if we could figure out what that was. We talked about the aspiration and how it happens and she gave us the option to opt out of the swallow study. After some discussion we decided to do that study but to only do a very small amount (the same amount we give her orally each day for her medications). We decided to give it to her in a syringe so we knew exactly how much we were giving her. Currently the only way she is getting anything orally (her meds) is through a syringe. We decided that since all this test would look at was the first swallow, that is did not make sense to give her a lot to just make her aspirate when the camera was not on.
We got the barium in the syringe and started the test. The test last just over a minute. Jillian did not aspirate during the test but we did not figure she would.
The speech path said after the test that she has an immature sucking pattern but with her history she would be surprised if she did not. She agreed though that we should not be giving her anything but her medication by mouth. She said that with Jilli it is not safe. The speech path understood Jilli and her feeding concerns.
As much as I had a lot of anxiety going into this test, it did bring a little bit of peace about the upcoming feeding team evaluation. The speech path that did her swallow study is the same speech path that is on that team. Hopefully since she has already met with us and knows us and Jillian's story, I am hopeful that she will be an advocate with us for what is safest for Jillian. I know that everyone that works with Jilli wants to do the best thing, I just feel like some people define what is best for Jillian differently then others.

Since the test... Saturday morning Jillian woke up coughing and needing a neb. Saturday afternoon she was doing better. Sunday morning she woke up with a temp of 99.4 and needing a neb. We did nebs every 4 hours Sunday. By Monday her temp was down and we did a neb in the morning and then she was good. Tuesday morning she started off ok and then part was into the morning her teacher came to me and said that she was really rattly and asked if she could do a neb with her. We then did nebs every 4 hours the rest of the day. Yesterday she was rattly too and did nebs all day. You can feel one spot in her lungs that has a definite rattle to it. She has had a green runny nose off and on too, but honestly this is not too bad for her having taken something by mouth. We did not have to put her on antibiotics or admit her to the hospital. We did only give her a little over 2ml though and she let a good amount of that roll back out of her mouth. I know it is crazy that such a little amount could do so much but for Jilli that is just how it is. Could you imagine what this week would have been like if she had more?

Monday Jillian had her 18 month check up. Her check ups mainly consist of me filling her dr in on everything going on and what is happening with each of the specialist. She goes over the basic things too. She looked at Jillian's bottom and where her pee comes out is fusing again. We are going to put the cream on it again. We talked about Jillian's speech and gross motor delays. She has referred us to an independent therapy place in Elkhorn. We have her speech eval set up for Monday and are working on a PT eval. Her doctor did not like the amount that speech and PT are coming from birth to 3. Now we are trying to figure out all of the insurance stuff for having her in b to 3 and a private company. I feel like a total jerk if I were to pull her from b to 3 after just having them come out and re-eval her.

Things for Team Jilli are in full swing. This week at work we started a penny drive for Team Jilli. It is so cool to see the kids get so excited about helping other kids! Our Team Jilli goal this year is $1,500. 

This Monday night our friends Brain and Lauren from collage joined our dinner with Jaime and Jason and Dan. It was a really good night catching up with old friends. We were able to meet Brian and Lauren's little boy Joshua. Joshua and  Jillian just kept staring at each other. Jilli did a good job sharing her toys with him. It was such an encouraging night for us and we were so blessed to spend time with friends.

Through this long week I have been so grateful for some amazing people in our lives. For Jaime, my Aunt Sandi and my mom for talking to me and helping to ease some of my nerves before Jillian's test. I am so grateful for these three amazing women in my life. They are such a blessing to us. I am thankful for all the people who have prayed for us. As my Aunt Sandi put it "you are the people who go to your knees for us while we fight the battles and when we feel to weak to keep going." Your prayers have really been felt this week.

Seth and MiKaley came over for dinner. Jillian liked playing with them

Grandpa reading Jilli a book

She is wearing the same clothes she did last summer. She is between 9mo and 12mo in clothes

Playing with Potato Heads. We have some of the coolest Potato Head parts from Disney World

She LOVE Gears

Working on walking

Curled up with a blanket

The post op shoe is off my foot! My toe is still sore but doing much better!

Jillian's Breakfast... acid reflux meds!

Helping daddy fix a problem at work

My rock star tubie girl!

I love those sun glasses! They only stay on for a minute or two at a time but they are so cute!

Reading Doc Mcstuffins with Uncle Dan

Getting comfy while taking a neb!

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

Yup... I thought so

Jillian taking an afternoon nap

So after the swallow study speech went to the team of doctors and said that she thought Jillian could take whatever by bottle because she was not aspirating. Thus the team said that the three 15ml bottles a day that Jillian was getting of water was going to switch back to milk. I did not think this was such a great plan but I went with it figuring it would not last long anyhow, and if it was not going to work I rather it fail here then at home. Well it lasted even less time then I thought. Jillian got her first milk bottle to drink at 9:00 tonight and within 5 minutes she was choking and turned red and has been coughing off and on since. I have decided no more milk bottles for now. I want her to continue the skill of sucking but I can not have her choking on milk... that is why we are in here. I guess we will discuss it more at rounds. I am willing to keep doing water as long as she does not choke on it.
The stool softener and enema have worked today. She pooped twice today. Once this morning right after getting it and the second time was while choking tonight. It is not her normal poop though and I can tell why she needed some help getting it out. :(
My mommy came back tonight to hang out with us. She will be with us tomorrow while Brent is at work. I am so fortunate to have such amazing family and friends that love us and take care of us.
Well I need to go watch Jillian sleep. She is choking a lot again and just started turning red again while she was sleeping in her bouncer. If it keeps up like this my mom and I will end up taking turns staying up tonight with her. Right now she is back in grandma's arms.

We know its not something we knew it was not

After rounds speech decided that they did not need to watch her take something by mouth before they did a swallow study so we went ahead with just doing a swallow study. Jillian sat in a chair like contraption and i fed her. She sucked just fine like I thought she would and did not choke while she was eating, which she does does not do anyhow. They completed the test at that point and said she was fine and that she does not aspirate. I did not think she aspirated while eating, but when it comes back so it was frustrating that this test did not last long enough to see it come back and if she was aspirating on that. She has however the barium mixed milk has been a yo-yo in her system since the test. She has not puked any of it however she only got 15ml (1/2oz) of it. I know we needed to do that test to rule the swallowing out but it kinda feels like a waste and frustrating because they were trying to say that she defiantly does not aspirate without watching the time of concern for aspiration.
Genetics also came up today too. We met with a resident first (who was on rotation on this floor last week so we have seen him twice now in two different rolls) and her asked us what is new since the last time we met with genetics when we were inpatient. A couple of hours later a geneticist, the resident, and  someone else came into the room. They looked her over and said that she is cute and that in their line of work that is a good thing. They noted something with her ears and chin... not sure what. We talked a little bit of the possibility of a mitochondrial disorder. The only thing they can do for testing for that is blood work and urine. They can do a muscle biopsy but they don't like to do those on a 4 month old. They said for now we just need to focus on getting her food and that we would talk more later. They also said time would tell more about all of this...
So for now we sit again and wait for rounds to see what is next...
We have had some visitors today. One of our ministers came and visited us and my aunt and cousin. We were laughing when my aunt and cousin because my cousin is a frequent visitor to this floor of the the hospital and one of the nurses heard his voice and came in to see why he was here. 

The plan

Jillian did pretty well over night. She tried ripping her tube out this morning. With the bridal in it is not taped to her face (it is taped behind her ear) so she can get her whole hand around it. She screamed like crazy from that... one more reason the bridal is not my favorite thing.
Rounds this morning brought a packed house. Monday is doctor change day so we had last weeks and this weeks doctors all in the room. (I like new docs a lot!). Here is the plan:
1. Jillian has not pooped since Friday and is getting increasingly upset when she has to pass gas. We have decided to give her a suppository and a laxative. Someone may need to save us from the poop later today!
2. Jillian's blood work was off in a few different areas when we were admitted. It looked better yesterday but still not back to normal yet. They are looking at running those labs either tomorrow or Wednesday.
3. The first thing they want done is for speech to come evaluate her swallowing. I don't expect this to do much because they have watched her eat once before, but it will be good to have done second  time.
4. They are talking about having a swallow study done if speech thinks it is a good idea. Im game for this:)
5. They have currently decided that we are not doing a PH study, at least today. We will see what tomorrow's idea is about this test. They said that because she is not eating anything but negligible water they don't think this test will show anything right now.
6. We had an appointment to see genetics tomorrow. They are going to call down to genetics to see if we can just do the appointment as a consult in our room.

Currently we are here until at least tomorrow. Our new attending looked at me and said she will be here all week and hopefully we leave before she does...
 

A new plan

I finally have a clue of what is going on here! Rounds can be the best time of the day and sometimes I wish they happened more then once a day.
Jillian took a bottle around 9am and started choking promptly after. Rounds started around 9:15 and Brent stayed in the room with Jillian because she was choking so much and I went into the hall for rounds. They asked how the night went and I told them that it was uneventful. I informed them that she had been choking for several minutes at that point and they stopped and listened to her choking. They then decided that all breast milk feeding would stop by mouth. She is now on continuous feeding 24 hours a day at a rate for 34 ml/hr with breastmilk fortified to 24cal. She gets to try 1/2 an ounce of water 3 times today but if she chokes she is done with oral intake. The purpose of the water is to keep the eating skills however the volume is not being counted into her needed fluid intake. We are also trying to figure out how to make up for the calories lost yesterday... That frustrates me because she did not need to get as behind on calories as she did but lack of communication caused that.
We also talked about a few tests. I asked about a swallow study to see if she is aspirating and  the doctor told me that she can hear her aspirating just by listening to her so she did not feel that was needed. We also talked about a ph study. The problem with that is it is a second tube that needs to go down her nose. Since Jillian is so little they cant put two tubes down one nostril and she is too little for a tube to go down each side so they said the feeding tube might have to come out to do that test and it is a several hour long test.
The decision was made that no tests would be scheduled until Jillian's GI doctor is back in on Monday (right now we have floor drs) This means we will be here until at least Monday and longer if they decide to run tests on Monday.
There has been a little talk of doing surgery and placing a G or GJ tube. With that she would no longer have a tube coming out of her nose, instead it would be surgically placed in her belly. This would make it less like likely that she could pull it out. She currently has a bridal (plastic piece that holds the tube in place and is looped around the inside of her nose) on her NJ tube to try to secure it better then just tape. I'm not a big fan of the bridal since it hurts her if she pulls on it, however it was placed when the NJ was placed. It is really hard to keep a 4 month old from pulling on a tube coming out of their nose and she hits it with toys all the time. I am not excited about handing my child over to surgeons but the past few days have proven even more that this is not a short term thing and having the tube surgically placed might be the best thing.
Around 9:50 this morning I ended up calling the nurse in to see when we were going to hook her back up to the tube (she had been off for over 2 hours). She came in after a while and told me we would start again and that our care partner would bring in a bag. We got the bag and I hooked up her tube and got everything started. Right now she is in and out of sleep. They brought her a mobile and she seams to like it (its not her animal friends though, which she finds fascinating)  We are just hanging out.
Jillian would also like to note here that she wishes her uncle Seth a very happy 21st birthday. You said you did care what we did today, so she decided that we should spend it at Children's. Next year... make a plan :)

We got a good view this time! I can see the mall :)