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!
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