Long few days

If you follow me on Facebook you know we have had a long few days... but I am going to try to lay out all of the details, in part so I remember them.

Monday a little before 1am I woke up to Jilli coughing so hard she couldn't catch her breathe. We started a neb and I then took her to the closest ER. The front desk person immediately brought us to a room. A nurse came in and listened to Jilli and then a young Dr. came in. He looked a little nervous. He ordered a chest x ray and a dose of steroids. The nurse kept hearing her wheeze but the doctor didn't. My mom joined us in the ER. a little while later the dr came in and said that she didn't have pneumonia (which I knew) and that we could leave and if I wanted to I could drive her to children's. Jilli got very nervous and was shaking her head no to leaving. She wanted to stay in the hospital. She knows her body. Eventually she calmed and we brought her home so we could figure out a plan. I got her into see her ped because I wanted someone who knows her to get eyes on her. Her ped looked at her and sent us to the children's ER and called to let them know we were coming. We got to the ER and it was packed but as soon as we saw the triage nurse she moved us along quickly and got us into a room. It took a bit for the fellow to come in and once she did I asked her to page our specialists. That I wanted Special Needs to come down. I also told her specifically what other dr needed to know we were there. I explained to her another layer of this was we only had 6 viles of neb meds left and with her taking them every 4 hours around the clock that was not going to last us long however I have been working since April to get the med but still don't have it approved by insurance. Our nurse then changed to the nurse that was doing traige. I wish I had this nurse's name because she was amazing. A little while later the fellow came back and said she called our specialists and told them not to come down. She said it wasn't her job to worry about how much ned meds we had at home and that 6 should be fine and she would send a script for it to the pharmacy and because she works it the ER that will magically fix the problem. I explained to her that Jilli was unable to support her own body and kept pointing to her stomach because her stomach muscles hurt because they were doing all of the breathing and not her lungs. You could hear a wheeze come and go however she kept claiming that "normal" kids get sick and feel tired. She never asked me what I thought or what we do in situations like this. It was time for Jilli to have a neb while we were there and I had to push her to do that. Jilli was mainly communicating by pointing as she didn't have enough breathe to talk and when she did talk it didn't make a lot of sense. Stacy and Caroline stopped by with lunch for my mom and I and coffee. I am so thankful. The entire ER trip was like banging my head into a wall. The nurse got frustrated and she saw what was going on and went and complained to the attending who we had not seen and then the attending walked in the room with the fellow and the fellow said that Jilli was fine so the attending was in and out of the room quickly. It didn't matter what I said. It didn't matter how I advocated for my child and her history and how her body works, the fellow just dismissed her. She was so condescending and blocked all of my resources. I was going to ask if she could put in for us to stay at RMH for 24hours to keep Jilli close but she "diagnosed" Jilli with viral croup and aspiration (based on what grounds who knows!) so then she was considered contagious even though she is not so she could not stay at RMH. As I got to the car the pharmacy called and said the fellow didn't even fill out the form that you need to for the neb med (its expensive and needs a prior authorization form, she knew that because I told her) so they were going to have to find someone to fill that out because they couldn't do anything until that was done. We left and went to Nates house where Caroline and Stacy also met us. I cried. I don't cry often but I feel beaten by the ER experience. I called her specialists myself and everyone was angry that the ER didn't admit her especially with her history and the med issue. We hung out there for a few hours but once we were getting low on oxygen (I figured we were being admitted so we didn't have much with us) and we needed the nebulizer because I had already done one with an oxygen tank but that uses a lot of oxygen and I couldn't find anyone that I knew in the area that would led me theirs. We went to Walgreens to pick up Jilli's meds and the ER dr ordered pills instead of the liquid for the steroid and Jilli needs the liquid, they said they would call and see if someone would change the script. We also talked about the neb med and Walgreens was more worried about it then the ER doctor and gave me an emergency few viles. We headed home and got Jilli to bed. Brent was up multiple times with her during the night coughing.

Tuesday: I got up and called Walgreens to check on meds... apparently overnight shift didn't tell the day shift anything about either of the med issues and didn't contact the ER to get a new script so I asked for that to be taken care of. I worked on getting the kids ready. I called Walgreens again and they said they had just heard back and they were going to have the steroid for me in 20min. I got the kids ready to go and then headed to Walgreens about 40min later... I then waited in the drive thru for 20min and then when it was my turn they had no idea what I was talking about and had not started on the med. After spending another 20 min there I needed to leave to get to the wheelchair fitting so I left and had Brent call them and they said they were going to start working on the med. We then headed to our therapy place for Jilli's wheelchair fitting. Her body was so tired we laid her down. When they needed her I would lift her into the chair. She was so tired she could only sit in her chair for a few minutes and then I would have to hold her up. The wheelchair fitting took a lot longer then I thought it would and we ended up figuring out some different things need to be ordered for it including a chest harness for days like this. Then they installed the smart drive (the part that makes it a hybrid chair) and its broken!!!! They had to call the company and they are sending a new one and they are hoping it will be in by next  Tuesday. Its frustrating! I then headed back to Walgreens where I got to spend 20 more min to get the steroid. We got home and found out she needed 80ml of the med! She normally gets fed 58ml an hour. So I held her feeds and pushed the med in very slowly over more then an hour. She spent most of the day laying on the couch. At 9pm she got her neb in bed. Around 10pm I went to go to bed and her pulse ox started dipping to the mid 80s while she was laying still sleeping. It would take several minutes to bounce back. Just as we hit out threshold how number of crashes she stabilized so I spent a long time then watching the pulse ox. She had one rough coughing fit in the middle of the night.

Wednesday: Brent called the pharmacy this morning to check on the neb med and they accidentally put it in before for the inahiler version of the med instead of the neb and so they had to resubmit it but now insurance has 21 DAYS to decide if they are going to cover the med or not!!! This is insane! We also saw Jilli's ped today. She said to keep watching her like a hawk and if she has any more dips to go back to the ER. Right now she is resting in a laundry basket with pillows because her body is so jittery from all the meds she was falling off the couch. She will lay for a while and then sit up jittery and then lay back down. We just keep chugging!

Im exhausted... Brent is exhausted. She is in the grey zone. She is needing round the clock care. We do what we need to for our kids because we love them and want the best for them but this week we are worn! We will see what tonight and tomorrow brings!

Symptoms Jilli is having right now:
-shortness of breath
-intermittent wheezing
-muscle weakness (struggling with sitting and standing)
-coughing

This is similar to what happened in April, just not as bad