Yesterday we had another long day. We were moving a little slower in the morning since our schedule didn't have anything listed until 10am however I realized at 8ish that Lydia's skin biopsy was never done and that needed to happen before we left so we headed to the hospital to make sure they were not trying to do that then and it just wasn't on our schedule.
It was snowing at NIH so only essential personal was reporting to the hospital... this meant issues with buying coffee :( We got settled in the room and hung out until almost 10 when transport came to get Jilli and I for an EMG.
Jilli had an EMG when Lydia was only a few weeks old. That test created a lot of anxiety for Jilli and I so I was not looking forward to doing it again but Brent was trying to work as much as possible and I also knew that in really hard moments there is something about having your momma and felt like my kids deserved to have me help them through it even if it was really hard for me.
We got up to the room and the first part went fine... I was able to distract Jilli and it went smoothly... then we transitioned to the needle part of then test and Jilli became very angry and as much as I tried I was struggling to distract her. The doctor called our coordinator and she came up to help. I also called my dad on Facetime to talk to Jilli. We all worked together to keep Jilli as calm as possible during the test.
Jilli finished and the doctor said that she was able to take Lydia right away instead of waiting until the afternoon so our coordinator and I went down and dropped Jilli off and picked Lydia up. Lydia was less happy from the get go. I Facetimed my brother for a few minutes and then my mom. We all sang songs to try to distract Lydia. It was not fun but we made it.
We then went back down to the room and someone from the lab met us to say that the girls both still had more urine that needed to be collected.
We then hung out in the room for a while until the NP and head doctor came to meet with us for our wrap up meeting...
Their recomendations we are looking into are:
-looking into vitamin D levels for both kids because they were low
-Look into Lydia's fluid intake (we are meeting with the dietitian soon)
-talk to cardiology about doing a bubble echo
-see ENT about Jilli's hearing test results
-look at leg bracing options
-look into restless leg syndrome because the sleep study diagnosed that however it really doesn't make sense for Jilli and the treatment that they normally use wont work for her based off of blood work
-talk to GI about changing laxatives
We talked about the lab tests that have come back already and some odd tests have come back strangely but nothing in a way that is a definitive answer about anything.There are still many, many tests still out pending and several will take many months to come back.
The quality of life conversation went the way I was guessing it might.
Then they suggested some tests at home that we had already done and we started scratching our heads and they started talking to us about things that we have talked about at length with out home teams and if they had even glazed the notes they would have known that. I do not expect anyone to know 100% of the girls medical record because even I at this point forget little details but these were big things... but the more they talked about testing and the more we asked questions we realized something... they did not have any of our pulmonary or GI testing... they didn't have the 24 hour pulse ox studies or all the GI motility testing. We had talked about these tests earlier in our visit and were blown off but if they do not have any of that data that explains a ton of the things they were saying like when they kept saying that our doctors didn't have any data to support the interventions the kids are getting... well without that data you are right, but that data shows all of those things. When I am frustrated about is that instead of asking if we had any of those tests they assumed we didn't and made assumptions about our doctors and us that were not fair or right. They also made recommendations based off of the data they had (missing all of the big things) and those recommendations did not match what we were telling them. There were several recommendations that if they had asked questions they would have understood what we were already doing (like how we monitor pulse ox) which might have prevented many of the frustrations. There is part of me that feels better that the recommendations that they had made about some of those things were with missing information but it also makes me really mad that they just assumed a lot of things without asking. It felt a bit like they had a preconieved notion about what medical families were like and based off of that they had certain ideas about us before they ever met us and some of them were not fair.
The NP went up to to the stuff to do Lydia's skin biopsy and the doctor stayed and talked with us about education and it felt like for the first time in 11 days that he was maybe getting a glimpse into who we are.
We then did Lydia's skin biopsy. Once again, not fun, but we made it.
After they left I realized they mentioned nothing about Jillian's crashes in the wrap up meeting... and honestly the entire time we were there everyone seemed rather uninterested in them... which boggles my mind... I sent our coordinator a text asking if there was any insight and she said that the NP would get back to me.
We were able to collect Jilli's urine earlier in the day however Lydia had not peed in hours so we were waiting on that. We worked on discharge and packing up the hospital room while we waited on urine. We got the urine and then waited on the formula and then left the hospital for the last time to head to the Children's Inn.
Because it had snowed dinner was cancelled so we found a freezer pizza and ate that and then headed to the room to finish packing. We asked how we checked out in the morning and got a really unclear answer. Some things about the housing are still confusing to me lol. We got the kids hooked up and to bed and then tried to get to sleep.
I woke up at 5am to make sure everything was set. We had gotten the kids up and moving and dressed. We were told the cab was coming at 6:45 for us but my phone rang at 6:15... the cab was there and waiting. Crap... we got moving quickly and got outside.
We flew out of a different airport then we flew into. There was a baseball team trying to check in at the same time which made things interesting but we made it through check in and security was not too bad.
We then got settled and found some breakfast. We were able to pre board the plane and thankfully it was a very light flight. We switched which kids we rode next to and overall it was a really smooth flight. As I was sitting there I felt like God kept reminding me that He is good even when I do not have all of the answers. My head kept having different worship songs play... it was like a worship service in my head on the plane. I felt very at peace about coming home without an answer. It is not that I am not still frustrated about how several pieces went (and thankful for other pieces, especially or coordinator) but that neither of those things changes God's goodness.
We landed and found out that the continuation that the plane we were on was being cancelled due to weather so we unloaded the plane to a lot of people finding out that their flight had just been cancelled.
We made it to baggage claim and got our bags and headed to the car. Our coordinator sent a text saying asking if we landed safely. I responded that we ahd and she sent backthat she walked to our home genetics and toe expects a follow up soon. I am not sure who that follow up is coming from, but we will see... at this point in the week I don't even know what to think.It was very sweet of her though to make sure were were safe.
We went through a drive thru on the way and then got home to snow. Several people tried to get our snow taken care of but it just didn't work out which is fine so I dropped Brent off at the top of our driveway because the van wouldn't go down and decided that I would run to the store with the girls to keep inside while Brent cleared the driveway. A few minutes later Brent called... we went into the house and it was 48* inside so he went looking for the problem and found that we had not propane. AHHH. We just had propane delivered in December but it has been so cold that we went through a lot. Brent called the propane company to figure out a plan ($150 delivery charge to get it delivered today or it wouldn't come for another 7 days...). While Brent was working on figuring that out I took the girls to my parents to keep warm and inside until we had the driveway clear and had heat again.
Brent got it all worked out and around dinner time the kids and I headed home. Thankfully we now have heat!
I am very very tired but we are still running off of the craziness. Hopefully tomorrow we can start to decompress. Off to bed... I am falling asleep while typing.
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