Brown and Pink Polka Dots : Another Hospital Stay

What is February without hospital time?! Jilli doesn't know.

Last Thursday Jilli woke up with that croupy cough but no other upper respiratory symptoms so we started doing nebs and prednisone (30mg). Her body was tired but she was still playing and sitting and walking some. I was keeping a close eye on her but not worried. Lydia was also doing nebs but that is because she tried to eat a crayon and her lungs did not like having crayon in them.

Saturday morning my mom came over so I could shower (that hadn't happened in days with both kids needing nebs). She walked in with Valentines day gifts, she got Jilli an Our Generation set she has been asking for and Jilli looked at it and said thank you and set it aside because she was resting. By mid afternoon her pulse ox resting was at 95 (while on oxygen) and we tried to get her to sit and her pulse ox tanked and she couldn't do it. I called our Special Needs team and let them know we were headed to the ER. I am so thankful for them because they are able to call ahead to the ER and let them know we are coming and put us on the list so we are able to be taken back quickly and avoid germs.
We got to the ER and they got us back to a room. They got her IV started and did a chest x-ray. The med student came in and said that he talked to special needs and that unless I felt otherwise they were going to admit her. About 9:30 at night we got up to the floor. We were hoping since we met with pharmacy in the ER that the med process would be faster... wrong! It took until 2am ish for all her 10pm meds to make it to the room. It was a long night! The med student came in and took her history, I felt bad for him because he was so confused. The fellow came in and I pushed for them to run the one urine test, at first they wanted to wait until morning however this test is time sensitive so I ended up getting them to agree to run it. After 2:30am I was finally able to go to bed. I am glad I stayed up thought because our nurse almost fed her into the g instead of the j, this is why I am on top of everything in the hospital.
Saturday morning we were told we were on a new team at the hospital, the silver team. At first I was a little unsure, we were on a different floor (9) because ours was full and they put us on a different team, but it ended up working out really well. The attending on the silver team Sunday and Monday is the sister to my doctor, my very smart think of things other people miss doctor. She had been on our Nelson Team meeting. The Nelson Team is a group of all the top doctors at CHW that sit down in a room to discuss cases that the hospital is struggling to figure out. Her having been on our Nelson Team means that she had a full history of my girls which is such a nice place to start. Sunday we spent most of the day just watching her rest. They did nebs every 4hr and continued the prednisone and IV fluids at 50. Brent's parents also came up to see her.
Sunday we also had another visitor, our special needs doctor. He came in to meet with me about the Nelson's meeting. The Nelson group is going to look to see if there are any pieces of Jilli's leg muscle still in the lab, if so they are going to run one test on it but it is more of an intrigue test then a diagnostic test. The Nelson Team came to the conclusion that we have reached the end of our diagnostic road at chw. When those words came out of his mouth I felt like the wind had been knocked out of me. He said they are still going to work hard at chw to do all they can to treat the symptoms and support the girls, it is just that they physically dont have any more tests that they can run. He said that at this point he is suggesting we apply to the National Institute of Health (NIH). This is a complex process. NIH is the government health research center in Maryland. In the past 8 years they have received 10,000 applications for the program we are trying to get into, they have accepted 750 and have actually seen 700. The odds of getting in are low! Our special needs doctor has already called someone he knows at NIH and talked to him about our girls. This person is not in charge of if people get accepted but said that if we are accepted that he will make himself the head of our case there. We are currently working on the first round of paperwork. It could be months before we know if we are going to be accepted or not. If we are accepted we need to head out by Washington DC for a while to meet with doctors and run tests. To help prepare things for if we get in chw is going to run Lydia's full exome sequencing. There was some red tape that needed to be delt with to get that to happen but our special needs doctor got through it this week and hopefully Lydia's test is run soon.
Mondays in the hospital after a weekend admission are crazy. From 9:30-1ish I felt like our room was a revolving door between doctors, therapists and nurses. PT was able to get her to sit for a few minutes and OT was able to help her with her hands some. Anytime anyone would come into our room she would pull all her energy together and then after they left she would be exhausted.
Tuesday we had a calmer day. Hospitalists change on Tuesday and we were blessed to get a second one who had been in our Nelson Team meeting. This doctor was really good too. I noticed Monday night that she had not gotten her salt since we had gotten to chw because the nurses thought nutrition was adding it and nutrition thought the nurses were adding it. I brought it up to the team so they knew and they said they would fill out an incident report, its not that I want anyone in trouble but if there is a communication issue of who is suppose to be adding salt then as a hospital that is something they should have a policy for. I appreciated that this doctor wanted to make sure the underlying problem got fixed in the big picture of the hospital. Dance therapy came in and Jilli laid in her bed and they blew bubbles to music to help her with her lungs. Our minister came up and visited with us. School also came to see her for the first time since she is 5 now. She LOVED that. Tuesday night she was able to move her head off the pillow by herself which was a change in the right direction. She was also super emotional, they didn't step down he prednisone so she went from 30mg to 0 and that was really hard on her body. Tuesday night she cried about all sorts of things, the BabiesRus closing in Brookfield, my mom needing to go home, and at one point she didn't even know why she was crying.
Wednesday at rounds I pushed that I wanted PT to come in and get her to stand before we left. I also said that she needed to poop. In all the mess of getting meds in the first night they put her laxatives in wrong so she was not getting enough and on top of that when she has these crashes her intestines slow so she had not pooped since Friday. It took a couple people paging PT but they came in and stood her up for a few seconds. I wish we had our normal hospital PT, this one was timid to work with Jilli (she admitted that). Insurance pays for daily PT in the hospital but only weekly outpatient and she needs frequent PT when this happens so the more we can do in the hospital the better. They also gave her a suppository to help her with poop. She has never has a suppository be so painful! Art Stephan came to see her after it and she tried so hard to do art with him (they were making a mini watermelon out of pencil and an electric eraser) but she got to the point where she was in so much pain that she asked him to leave. School stopped by and dropped a book off for her and Art Holly stopped by to say hello. She ended up pooping some. She had a while where she was writhing in pain. The nurse came in and took out her IV (oh my did that smell, she has dysautonomia and sweats like crazy during these events, the nurse said it was the stinkiest IV she had smelt, the nurse and I threatened to leave Jilli's room, between the poop and the IV it stunk SO bad. We went to sign the discharge papers and noticed that the part about her being discharged to RMH had not shown up on her discharge print out, it was in the computer so the nurse wrote it out for us. Jilli and I then headed to RMH. I had realized I didn't have an RMH key and Brent and Lydia were at Walgreens but thankfully a friend was walking out as we were coming up so she let us in. We said hi to a few staff members and then went to the room for Jilli to rest.
Thursday was spent mainly in the room resting and playing iPad. Jilli went to art therapy but just the work of trying to sit in a chair like a dinning room chair was too much work for her body and her pulse ox dipped.
Friday Jilli had PT. Normally she does 60min of pt but was only able to handle 20min and then got slap happy. That is what happens when Jilli is not getting the oxygen she needs, she gets really silly. We came back to rmh and she rested. Her pulse ox kept dipping. On of the staff members at RMH came to the room to meet with me about a project I am helping RMH with and during that times Jilli's pulse ox dipped three times and she was just sitting on the bed playing ipad. We know this staff member pretty well but its the first time she has been in our room at rmh so it was the first time she saw all of the medical stuff... all the meds and oxygen and it hit her seeing it all together. We had to wait until bed time last night to have her stand again because we needed to get the dips to slow first. She can stand for a minute or so but then she dips into the 80s. Right now the goal is to get her to stand for 10min 3x daily.
This morning we got her to stand for a couple of minutes but her body got too tired and she needed to sit down. We still hopeful to get to go home later today but it will depend on her pulse ox crashes.

Some big thank yous this week:
-My mom drove Jilli and I up to the hospital on Saturday and then spent Saturday night in the hospital with us and helped with the logistics of Lydia on Sunday, Monday and Tuesday. Because of the hospital's flu policy right now Lydia could not go into the hospital so we had to work out having someone with her at rmh at all times. Mom also got a mylar balloon sent up from the gift shop for Jilli and meal tickets for me.
-Annette for getting out mail and feeding our gecko
-Holly and Kirk for letting oxygen get delivered to their house this week and bringing it over to rmh for us and for bringing us dinner.
-Aunt Pam for help with a ride for Brent with work because we only had one car up here.
-My brother and dad for running to our house to get Jilli's special chair and walker.
-Aunt Sandi for the bag she gave Jilli for Christmas full of decorations for her hospital room, Jilli loved having her Christmas tree and pineapple pictures up. Also to Karen and Stacy for the fun hospital gowns. Its the "little" things that make Jilli smile in the hospital which is a big thing to me!
-Our nursing team was awesome. Sunday we had a different nurse every 4 hours, but The rest of the week we had the same nurses and they were great!
-Our one doctor asked me what I was doing to take care of me in the hospital... in my head I laughed. I live in the hospital where one of the girls is there. I was washing my hair in the bathroom sink until we got back to rmh on Wednesday, so it was finding filling things in the little stuff like watching HGTV (we don't have cable at home so that is a treat) and eating cream of wheat for breakfast.
-Jilli always has some weird thing in the hospital, last time it was sheep, this time she wanted everyone to listen to her knee with the stethoscope... weird I know, but everyone played along and it made vitals easier.
-To everyone who sent encouraging words, payed for us or called to check in. We really appreciate you!

Jilli before we left for the hospital

Jilli in the ER

The dazed medicated look

Her Christmas Tree. Before Christmas Jilli was vary worried that if she ended up in the hospital for Christmas she wouldn't have a Christmas tree, so Aunt Sandi gave her a hospital decorations backpack for Christmas and inside was a Christmas tree