Brown and Pink Polka Dots : 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.