Brown and Pink Polka Dots : More Hospital time

This post is mainly going to be like a journal for me because I am trying to keep track of everything that happened in the last two weeks....

10/22- We went to church in the morning. At church I was given a gift from one of the life groups that made me cry and I am so thankful for. As I opened it I was literally thinking, why now, our life is in its "norm" right now, what would cause someone to think of us now. They knew we needed that before I did and I am so grateful! After church we went to lunch with my parents and then up to RMH because we had a week of appointments. Sunday afternoon we took it easy. We rested and went to dinner at the house. There was music therapy that night and Nate and his family came over to join us for that. Jilli enjoyed music and then we headed to the room and went to bed.

10/23- I woke Jilli up and got her dressed. She was tired but not out of the norm tired. I asked her if she wanted to do her wheelchair or stroller over to her GI appointment and she said wheelchair because she wanted to show the doctor (GI is Jilli's favorite doctor) The girls and I headed over to the hospital to grab me some breakfast before our 8:50am GI appointment. As we were headed to the cafeteria Jilli suddenly was getting very tired. I told her she needed to work at her wheelchair because she chose to bring it over to the hospital and I had Lydia in the stroller. We got down to the cafeteria and Jilli started yelling that her tummy hurt and she needed out of her wheelchair because she hurt too bad. I was able to calm her down. I asked her if she needed to poop and she said yes but then pointed up by her tube. I told her we were headed to GI so they could help her tummy. I then pushed a wheelchair and a stroller up to the 7th floor because Jilli said her stomach hurt too much to push. She is still getting the hang of the smart drive and with time will be able to use that in situations like this but she is still just learning the smart drive. We got up to GI and did weight and height (J-33lb, L-19lb) and then headed to the room. Jilli looked worn out. I figured she was just tired. She didn't talk much to the dietitian or nurse which is odd for her. Then she asked me to hold her, that her body was too weak. I held her and she wanted me to hold her like a baby. The GI came in and we talked. She commented that she has never seen Jilli like this (she has known Jilli for most of her life) and that I should keep an eye on it. The appointment mainly ended up being about Lydia (she vomits when she poops and has issues with pooping) so we started her on a med for gut bacterial overgrowth again (she had that earlier in the year) and are exploring some other med options.We then headed back to RMH and Lydia took a nap while Jilli watched TV. I put the girls in the stroller and brought them upstairs so I could eat lunch and while in the stroller Jilli fell asleep which is really strange for her. She slept for 2 1/2 hr! I called my brother and asked him to bring up the big neb because I was worried if she was sleeping like that she might be getting sick and I had the travel neb and a little bit of nebs with me but if she was getting sick I knew I would need more. Jilli woke up and her resting heart rate was 160. You could visibly see she was working to breathe and she couldn't sit up or talk. My mom got to rmh and she and I told Jilli over to the ER. The ER was busy but they got us in quickly. Once we got to a room the dr. and PA met us there quickly. They took a look at her and said she needed to be admitted, she needed labs done and an IV started. The nurse came in and started her IV and took labs and then things screeched to a halt. We got to the ER at 7pm and a few hours later I was really starting to wonder what was going on and knowing the fact that she needed her night time meds and formula. The nurse found the doctor and she came in. She had called the on call neuro and they said they didn't know how being in the hospital would help her!?!?! The ER doctor disagreed and so did we. She asked me how I was feeling and I explained to her why home was not an option. She went back and fought for Jilli. The ER tried to be as helpful as they could with getting some of her stuff but some of it they just couldn't do in the ER. Finally around 1am she was admitted.

10/24- It was after 2am before she was finally settled in the room and I was working out with emd students getting her all of her meds and formula and I went to sleep about 3am. I got up a little before 6am with the first people coming in to talk about what was going on. A lot of people were in and out of the room that day. They paged all of her doctors to let them know she was in and called in OT and PT. In therapy Jilli was able to sit up with help but was so exhausted after she was sleeping. She barely talked most of the day. She wanted to do things but was just so worn out. Her Neuromuscular doctor came up after clinic to check in on her and he came up with more off the wall ideas of tests to run... we have run all the "typical" tests at this point that now we are having to run some off the wall things. Pulmonology also came in... I wish they had looked at her chart a little better before walking in because their brilliant idea was to put her on a med she has been on for years.... They did decided to run blood gasses. The first blood gas was rough and apparently not done fast enough because it clotted so they had to come back and do another one. We also started our issues with nebs, for some reason about once a day her neb med would drop off her med list and then if I was not watching super closely she would miss the dose and start coughing. This night she was over tired and fussing and she made a med student give her the neb... it was kind of funny for the nurse and I.... That night for dinner mom, Lydia and I ran over to RMH so I could shower and Lydia got to do art therapy and play in the play room for a little bit.

10/25- I had an already scheduled thing at RMH for a check presentation with media so I put Brent in charge of rounds that day, especially after the first med student came in at 6am to tell me they had not ordered any of the tests the neuromuscular dr ordered and they were just going to send Jilli home because they were not going to cure her (yes I about went through the roof) and I was hopeful that Brent saying the same things I was saying but out of his mouth might help... it didn't but from his explanation of rounds its probably good I was not there because I might have needed something for my blood pressure. Thankfully the PT and special needs helped us communicate with the team that Jilli was not safe to take home yet. The discharge planner also called our therapy place and our home OT gave them the facts of life about how discharging Jillian with a resting heart rate of 140 and unable to sit independently was not safe. The doctors started talking about how they didn't know how to bill insurance for Jilli being in the hospital so they were worried insurance wasn't going to pay so they wanted her out... I told them the insurance is my problem and theirs is to help her, I get they are worried about patients getting a huge bill and that is a niece of their job but we can't neglect what my kids need out of fear of insurance (tell me again how our system here is amazing because insurance can't dictate care... because let me tell you the insurance companies do so much dictating of care here it is scary but hey, its a free market so that makes it more golden right....) The med students also kept saying they wanted to discharge her and she could do daily outpatient PT and OT but that is not a thing because insurance does not pay for it. Our primary gives her 10 visits a year and we have to fight the state every 6m to get weekly PT... daily just doesn't happen. On top of it this was the last day that the PT place by our house was open so we were loosing that at the same time. My aunt came over after the check presentation and visited with us for a little bit and Jilli slept most of the time. My mom brought us dinner and spent the night to help me (Brent and Lydia would go back to RMH at 8pm). They also in the morning re tested blood gas and in the late afternoon they did the blood tests her neuromuscular dr ordered and a urine test. Our special needs doctor also came in and talked to me and we brainstormed some. One of Jilli's favorite people, Holly the art therapist came in and they decorated Jilli's neb mask.

10/26- She was so much more tired this day. When special needs came in before rounds Jilli could barely look at them and they became worried and said by their assessment there was no way that Jilli could leave the hospital that day. Special needs talked to the team before rounds so rounds went a lot better. She had PT and cried during most of it because her body hurt so much and just sitting was so hard. She rested for a while after PT and we had our minister come up and pray with us and during that time Jilli was able to play on the iPad. Then OT came and they decided to bring her to the 7th floor (she was on the 11th floor) to the gym there to see if getting her out of the room helped. She was able to sit with support but then her body gave out and she almost fell out of the wheelchair coming back to the room. She then took a 2hr nap (we had a friend visit during that and she slept the whole time) and then my brother in law and in-laws came over and she slept most of the time and then when she woke up she wanted the room dark and everyone whispering. Genetics came in to talk to me and there is a brand new muscle test that just came out that they decided to run on her. Her whole exome sequence can be re-run in December so instead of us having an appointment to say to run it they are just going to automatically run it. Around 7:50 at night she was ok with the lights on again and we worked on her sitting up again and she lasted about 7min with support before she fell over and dazed. Later that night we had a nursing student. Every time a nurse goes to leave the room they always ask if they can get us anything and normally Jilli never answers them (most of the time her body is just too tired) but this night the nursing student went to leave the room and asked if we needed anything and Jilli said sheep. It was out of no where. Then when the nurse came in and went to leave Jilli said the same thing. A little while later the nursing student came in and the instructor looked through the window and they gave Jilli a stuffed sheep. They told her it had been running around the hospital and they caught it and needed her to keep it in her room so it wouldn't run around the hospital any more. Jilli got the biggest smile on her face. It was so sweet I was trying to not cry. Her art therapist also stopped by this day and Jilli was too tired to do art... it was sad but Jilli had bought some art supplies for the art room at RMH and I had given them to the art therapist Tuesday night so the art therapists colored her a thank you card that was a purple poop emoji!

10/27- We woke up to a 6am blood draw (those are rough!) Jilli was going a bit better that morning and it was decided after she did everything she needed for the day that she would be discharged to RMH. OT came in and they worked on building Jilli's new playmobil set (daddy got her one and Caroline mailed her one!) and then she rested for a while. The dance therapist came in and Jilli decided she could have us sit the bed up and wave a streamer while music played. She loved the first song, the second song she had me help her wave the streamer and by the third song she was worn out and dazed at a wall. All she was doing was waving a streamer! She wasn't even sitting independently! At rounds they let me know that they have presented our case to the Nelson group at the hospital. This is a group made up of people from every specialty for children who are perplexing the hospital. This group meets twice a year and does a full chart review and everyone talks. They agreed to take on our case to brainstorm at their next meeting but in the meantime they were did a very brief review and suggested a test. I don't know when this group meets next but I hope it is soon and I hope they have some ideas to help us. In the afternoon the art therapists created an amazing moment for Jilli. There is a theater group in the area that is doing Little Mermaid right now and they came to the hospital to put on a little show but with Jilli's needs she couldn't go down for the show so the art therapists got Ariel, Prince Eric and Ursula to come to Jilli's room after their performance! It was amazing!!!! I cried! They love her so much and I am so grateful for all of the expressive therapies! Then we headed down to IR as Jilli and Lydia both had tube changes scheduled before she was hospitalized so we went down for that. It was one of the harder tube changes for Jilli just because her body was worn out and she had been through a lot that week already but everyone in IR was great. We then headed up to the room and had a new nurse who was incharge of Jilli's discharge. At rounds that morning I had asked that since they wanted Jilli to do outpatient therapy Mon-Wed the next week if we could be discharged to RMH to make sure she could handle that without needing to come back to the hospital. Special needs had said that was fine and I said I needed them to put that in writing per RMH rules and at rounds that sounded like everyone was on board with that plan but then suddenly at discharge the team attending said no so then it became a battle because she was not well enough to be over an hour from the hospital and we had no idea how she was going to handle outpatient therapy. The nurse fought for us and RMH helped and we got it sorted out. At the same time the outpatient therapy place decided to be frustrating so the last couple of hours at the hospital was a battle but eventually we got it all worked out and got discharged. We then headed over to RMH and Jilli took a long nap. We had dinner and then rested in the room.

Saturday and Sunday were spent resting, mostly in the room. My mom brought us up more clothes and Annette brought us up our mail. Sunday we went to art therapy which the girls loved.

Monday: We spent most of the morning resting. Jilli had PT in the afternoon and she worked hard. What I didn't love was when she would walk with support her pulse ox would dip into the 60s which is far outside her normal but it would come back up. GI called in the afternoon to check in and we spent most of the rest of the day just resting.

Tuesday: Jilli has OT in the morning and then we went back to RMH to rest. In the afternoon Caroline, Stacy, Nate, Holly and Kirk came over and Brent came from work for the halloween party! It was the girls first time trick or treating. They had non food options. They also had pumpkins to paint. It was very low key and perfect for the girls. At the end Jilli has a pulse ox crash and got very silly from lack of oxygen so we headed back to the room and she rested for a while and then we headed upstairs for dinner. After dinner was art therapy and then bed.

Wednesday: We had a calmer morning and Jilli did school for the first time since getting to RMH. Both girls had PT in the afternoon and they both worked really hard. We then headed back to RMH and the girls and I did music therapy (Jilli stayed in her wheelchair instead of dancing around) and Brent worked on packing and then we checked out and headed home.

Since getting home we have been taking life calm. Resting lots. Right now Jilli is laying next to me on the couch. Her body is tired but she is working so hard and wants to do everything she could before.

So while in the hospital they started her on a 5 day round of twice daily prednisone and did nebs every 4hr. We also ran IV fluids at 51ml/hr and her feeding pump at 58ml/hr. All of our doctors from outside the hospital were amazing as well as all the nurses we had... the orange team that we had in the hospital was rather frustrating many times.

Prayer requests:
-We need insurance to approve a special seat for in the house for when crashes like this happen. Brent got one from a lending closet last weekend but it is too small for Jilli. We are hopeful that since her primary insurance didn't pay at all for her wheelchair that they will cover this seat (we were already told medicaid wont)
-They would like to increase her PT to twice a week. This already has been a big issue and too much stress. Our PT has been working hard to get this worked out but we need medicaid to approve the changes.
-Last night at 9pm one of the tests was automatically released to me and it is rather off and I am trying not to go google crazy. Our neuro nurse is out today so I was not able to hear what the doctor thinks of the results. Pray that Monday we are able to have a conversation about these tests and that maybe this leads us down a road to help Jilli. This wouldn't explain her overall but could explain these crashes she is having. I'm trying hard not to get my hopes up because we have been down a lot of dead ends but maybe this is a way to help her.

Here are some pictures from the week. I only take pictures in calm moments so they tend to catch the "best" moments in the hospital