We woke the kids up at 4:30am yesterday (I was up at 3:30... I just couldn't sleep!) and got on the road a couple minutes after 5am. We stopped and went through the McDonald's drive thru on the way but I barely could eat... nerves had the best of me.
We got to the airport and accidentally got on the ramp for the even numbered parking garage floors and the accessible spots are only on the odd numbered floor but it worked out because I pulled down an isle and someone left a cart there so we were able to use that to get to check in!
We made it down to check in and the staff was really nice. Our one bag was very slightly overweight but because we were traveling with medical supplies they didn't charge us. We then headed up to security which for us always takes a while but it was smooth. Jilli was a champ! TSA complimented her on how good she was at all of the parts and she told them it is because she flies all of the time lol! Going to Disney has really trained the girls on how to fly! We got to the gate and got our preboarding documents. The gate agent came up to us while we were waiting and said that she would be boarding us on the plane first to give us extra time. When we got on the crew was great and helpful!
The flight was smooth! The girls both played iPad the whole time. We landed and the crew helped us get off of the plane and the pilot went and made sure himself that they were getting Jilli's wheelchair off carefully and quickly for her and helped us get her in her chair.
We headed to baggage claim and our taxi driver called and said he was in the parking garage and to let him know when we had our luggage. Our bags came up and then we headed out to meet our taxi. The guy directing traffic outside called a taxi for us and then our taxi which was hired by NIH came and there was a bit of a thing (not with us, with the taxi driver and the airport guy) but it all got worked out and we got in the taxi NIH hired for us (thankfully because the taxi fair was close to $50) and headed toward NIH. On the drive we could see the Washington monument and several other sights in the area. Jilli thought it was really cool... Lydia slept.
We pulled into the NIH ground and our taxi driver asked us if we had any guns, illegal drugs or weapons. Brent and I said no... Jilli said "I carry a pretend knife in my pretend purse..." we talked about joking about knives while driving into a security checkpoint. Brent and the taxi driver got out and they unloaded all of our belongings and went into the chekcpoint building where they searched our stuff and they came out and swabbed the inside of the car. Then when the guys were done I headed in and they checked me (I forgot my phone in the car and they made me go back out and get it to check it too... this was no joke of a security checkpoint). We cleared security and then headed into the Children's Inn.
The Children's Inn had a roof issue last year and 2/3 of the building is closed still for repairs so things are in different places then normal. They also do check ins and such a little bit differently here... volenteers checked us in and we got up to our room. They said there is only one house tour a day at 5:30 but at 5:30 they said that the person who does tours was not there so there was not a tour... at that moment I was really missing our rmh!
Our room here is HUGE! Because we have two kids, we flew and we are here for 2 weeks they gave us two adjoining rooms so we have 4 full sized beds, a small table, two dressers, two closets and one bathroom. We are use to a lot smaller of a space at rmh so this is really nice.
There was dinner served here last night and one of the nice things with the meal groups is that any left overs that they have that wont go bad are left out on the counter to snack on the rest of the night (I am typing and eating a brownie that the dinner group left over... yum!). After dinner we went to the multi purpose room and they had a knitting class! Jilli has been asking to learn how to knit for months and I never learned how so I was no help. She was SO very excited to learn how to knit!!!
After knitting we came back to the room and got the girls ready for bed and hooked up.
This morning we got up at 6 am and got the kids ready and headed out to the kitchen. I found the coffee maker!!! We also found breakfast! There was a spread of pastries, doughnuts, granola bars and yogurt. It was perfect.
We walked over to the hospital. There is a shuttle but getting my kids in and out of a vehicle is a lot of work and walking is faster (for my rmh fam it is about the same distance of walking the bridge). First thing is standing in a line to sign in for admissions and then they have you take a seat until someone is ready to take you back and do your admissions paperwork. Brent took Jilli with him and I took Lydia since Brent and I both need to give blood samples we all needed to go through admissions.
We then headed to check into Jilli's hospital room. Jilli is considered admitted to the hospital and Lydia because she is under 3 and tiny she is outpatient. The got us to the room and they started doing all the intake vitals. Jilli loves to scream and yell "no spiders" any time anyone says vitals because one time a care partner said they were going to come back to her room shortly to do vitals and she thought they said spiders and she got scared so it has become her joke... its funny at home because her nurses know her... here she scared people lol.
Our nurse practitioner came in to meet with us and go over all of the study paperwork. Thankfully we have done genetic testing before so we have seen a lot of similar paperwork before. Something we learned today was that the gene act does not protect minors so Brent and I can not be discriminated against based on our genetic testing but that law does not protest my kids... ummm who do we get on fixing that?!?! We signed lots of stuff and then were off for the first of three rounds of blood draws. Today they took 12 viles PER KID! Jilli freaked out doing the draw and we ended up loosing the first vain... I haven't told her yet that we have 7:30am labs tomorrow... When Jilli finished with her draw she looked at me and said "I guess I'm going to have nightmares about that tonight." There my heart was on the floor... I just wanted to cry but instead we went out and I handed Jilli to Brent and I grabbed Lydia to go back in and do another round with Lydia... who actually was easier. While we were at labs our coordinator came to meet us. Schools here had a 2 hour delay today because is barely snowed... these midesterners laughed... other then the rain we thought it was kinda nice out. Our coordinator is SO sweet. I have been making phone meetings with her for months and am SO thankful for all of the hard work she has put in already. She was also really sweet with affirming words... I just do what I do as a medical mom and honestly I don't think I do this roll in any special way (often I wonder if I am doing everything I can for my kids) but one of the first things she said after meeting us was how she is so impressed with us as a family and how I know so much and am great about giving history and doing everything they needed. She told Brent how special I am. I sat there blushing. She said that she could tell there is a level of inner peace about me that you can feel over the phone... man I think that is one of the deepest compliments I have ever gotten.
Brent then found us more coffee (there is a Starbucks at the hospital really close to Jilli's room!) and then the girls had EKGs done.
Our coordinator then brought us to show us the cafateria... man we need this at our home hospital! They have a burrito station, a meal of the day, a make your own stir fry, a sandwich station, made to order sushi, and a huge salad bar! We were very impressed!!! Brent got a burrito and I got a chick sandwich with homemade chips that remind me of Disney World.
Our coordinator met us and we dropped Brent and Lydia off for sweat testing and Jilli and I headed for her CT. Our lab tech was amazing! She even made it glow purple for Jilli. Our coordinator met us and we headed up for breathing testing for Jilli. Jilli was tired at this point and the test required her to take her oxygen out of her nose and put a clip on her nose... she hated this because she doesn't like her oxygen out of her nose and she disliked the clip. Our coordinator made it a game and they pretended to be the big bad wolf... I was so thankful for her help!
While we were gone they moved Jilli's hospital room to a bigger room that has two beds in it so both kids can lay down. It is interesting because we have two different nurses because Lydia is a part of the day hospital and Jilli is a part of the normal hospital but the peds area for both is in the same section just on different sides of the unit.
Lydia had cotton balls in her diaper to get a urine sample and then we put cotton balls in Jillian's diaper and both kids needed swabs...
Our attending came in and met with us. There is about a 20% chance that we will leave this visit with a diagnosis... there is a greater chance that the diagnosis might still be years away but they will be working on things even when we are not here (we are getting samples they are going to store to use for more tests as more tests come out). Our attending asked about the girls oxygen needs (sounds like that part of their puzzle really interests the team along with the hypermobility and their small shoulders).
The a research team came in for a study Brent and I are participating in about caregivers... we are both wearing heart monitors for the next 40 hours... all in the name of science! We also have interviews, blood and spit that we get to give them.
Jilli's nurse came in and gave us the formula and then we were able to head out on pass to come back to the inn. As long as Jilli is doing alright at the end of each day she will be allowed to get a pass to come back and sleep here but we also have a room there if we need it and that room is our home base where we came leave charging cords and toys and such.
There was dinner again at the house tonight (there is dinner here up to 4 nights per week). The group catered in Penara Bread! It was so yummy and comforting! Brent ate fast and headed down to get the shuttle to go to the grocery store and I stayed at dinner to finish eatting. I met another family that had been to our normal hospital. One of the people from the dinner group came over and was talking to the girls. Jilli had her knitting on the table and the woman asked Jilli about it and said the she knits and started helping Jilli to work on it more. They got to talking and she told Jilli that she could knit when she grows up and Jilli said that she can't do that because she already has too many jobs. The woman asked what all Jillian wants to be and she said "doctor, nurse astronaut." and the women said "wow, did you know that you can be a doctor and an astronaut?" Jilli said no and she said that the department from NIH that was serving dinner was the department that works with NASA to send chimps into space for medical testing!!! She then called her boss over and they talked to Jilli about how NIH and NASA work together. It was SO cool!!!
After dinner the kids and I headed back to the room. The playroom here is in the part that is under construction so I am thankful for our big room so Lydia could get some energy out. We hooked the girls up and I am hoping they are sleeping in the room while I am in the kitchen typing.
Thank you so much for all the prayers for safe travels! We are going to have at least 20 appointments in the next two weeks so we are thankful for the prayers for energy to keep going and for calm hearts for all of us because some of these tests are going to be hard. My goal is to blog daily but I can't make any promises... but tonight it is time for bed. Please excuse if this post is full of bad spelling and grammar... I'm functioning on little sleep and I know my spelling is the first thing to go when I am tired.
No comments:
Post a Comment