Wednesday was one of the hardest days we have had... like one of the hardest days in the last 6 years. We saw GI who suggested we change the girls from lactulose to meralax, a pulmonologist (we briefly saw the attending from Walter Reed), neuromuscular (who did a msucle ultrasound that showed small muscles in the girls legs), a nutrition consultant (they think Lydia needs more fluid), a team meeting, immunology, allergy and a sleep study.(we barely had a break all day and didn't really eat much)
We also had a meeting with our coordinator and talked with our special needs team at home... we were really frustrated with the way some things were being presented to us. We felt like our word about things and the notes of our doctors were not being taken into consideration. They kept saying we had not medically proven things that we had.
It was rough... I am kinda underplaying the details of that day because I don't want to rehash it all publicly... we sought counsel from the people that needed to speak into the situation and could help to make things better and looked for advise from people we trust to speak into our lives. I called Jaime crying... Jaime has been there since Jillian was just a prayer and has walked this journey with us and has seen all of the steps and was able to speak truth into my heart. I called my mom crying and in a very mom way she asked if we needed her to fly here or if we needed them to help fly us home then.
Our team at home was also amazing at that moment. I called our nurse and she emailed the doctor who called me from home... sick. He is that invested in my kids. We talked a lot of things through and he helped to give us some wording to express our feelings to the team here and reminded us that our team at home knows ours girls really well and we will work together to make plans off of the recommendations they make here but reminded us that here is for recommendations not treatment (we were feeling like the team here was wanting us to change some things treatment wise immediately that we felt they were not taking into consideration all of the pieces and history) and if they are wanting to make treatment changes that it is fully within our right and not disrespectful to say that we need to talk to our home team first.
We are very thankful for everything they are doing here and how hard they are working here and we don't want to come off as ungrateful or disrespectful at any point which made it harder to find our voices in a situation that we felt recommendations were being made that we did not agree with based on the history of our children.
We had a really long conversation with the coordinator here and she expressed our views with the team...
For me, who wants to run away from anything that might possibly look like conflict, this was hard because I knew there was going to need to be follow up conversations so that night was hard because the day had been really rough and we knew that needed to be discussed the next day.
Jillian also had a sleep study that night and Brent stayed with her for that.
The next morning our team came in and we had some honest conversations... this is the type of conversation that makes my skin crawl but we all got through it and things are a lot better because of it.
Jillian then had a skin biopsy. Brent took Jilli to optomology and for an abdominal ultrasound. I took Lydia to ot, pt and rehab. Brent then met me to grab Lydia to take her for her abdominal ultrasound because the lobby was full of balloons that looked like latex (come on NIH!).
We then me with the genetic councilor. She was more checking on what we were looking to get out of this and honestly looking at many of our frustrations from Tuesday and Wednesday I think some of it stemmed from the team and us being on different pages about what the goals where. We all had the same end goal of a diagnosis, however the team was looking more at symptom treatment then we thought the conversations were going to be (like about their feeding schedules and oxygen use) and it felt like it was less about diagnostics... we have treatments that are working and while we are super thankful for any recommendations that have for treatments, our goal is a diagnosis... that is why we are here and if treatment suggestion come out of a diagnosis that is one thing but we were feeling like treatment suggestions were coming out of things they were saying they didn't know or understand why our girl's bodies were doing the things they do. Like with the girls oxygen... they came to us and said they did not understand why the girls need the oxygen (and a military doc said that like a military doc) and then in the next sentence then said that since they didn't understand what was causing the girls to need to oxygen that maybe they just didn't need it which in turn made Brent and I very frustrated because we have proven the need with pulse ox studies and so much anecdotal data from so many people that they do need it... we came here to figure out the why. We have done that song and dance before of a specialist saying they don't understand why the girls are using a support they are so we pull it away and then have a big problem. (like her sleep study Wednesday night was done without oxygen and she slept for over 8 hours but then kept falling asleep on us all day on Thursday and having complete sobbing meltdowns where you could tell her body was beyond exhausted... her body showed us that entire day that it didn't function well the next day without oxygen during the night)
My mom made a good point in talking with her about it. She said that she is guessing that so many people come here with the approach that their home team doesn't know how to help them so they are just throwing random things at their kid and they want this program to sort it all our and figure out what is needed and what is going on. Our view is different... we have supports in place that we view (and our home team) are needed based on testing and observation however we do not know at a genetic/structural level why all of those things are needed and we are asking them to help us figure that piece out. That is two really different views and have different approaches... and part of the miscommunication falls on us of not expressing our views coming into this well enough with the team here. After talking with the genetic counselor I think we are all coming at this at the same angle now which has massively helped communication.
I know many people come at health needs just wanting their kid to be as normal as possible and they will do anything to make their kid look normal but for us we have seen how going on oxygen made a huge quality of life improvement for the girls... their oxygen doesn't prevent the girls from enjoying life... it makes it so they can enjoy life.
After meeting with the person from genetics I took Jilli for dysautonomia testing and Brent took Lydia for an echo. We met with our team, got formula and then came back to the inn after the First Lady left and secret service cleared out. We came over and checked out the playground because it was nice outside. The kids loved it and laughed like kids! We gave them baths to get the sleep study stuff out of Jillian's hair and then went to bed early.
Today we didn't have to be to the hospital until 8 which was amazing! We met with cardiology this morning and then I took Lydia to eye clinic and Brent to Jilli to rehab and Pt. We had lunch and then I took Jilli to OT (they made her hand splints) and the girls got turns to go to the playroom. We met with our team and then headed out early because it was 60* here today and came to the playground. I went back over the hospital to pick up formula and meet with our coordinator.
We had a down night tonight. Jilli watched the new Kim Possible movie and Lydia fell asleep at 6:30!!!
Well time to head to bed now... we are going to take the kids into DC in the morning!!!
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