Brown and Pink Polka Dots : Why Jilli spent a week in the hospital part two

If you missed part one you can read it HERE

Wednesday: Wednesday morning I went into the bathroom to get dressed and all of the sudden hear a mans voice in the room. I walk out (dressed) to see a guy with an ECG machine. I had no idea that they were doing an ECG. Jilli handled it really well especially for having no warning. She helped them to push the stickies on. PT came in and with support Jilli was able to walk a little however walking shot her heart rate up in the 170s and it took over 5min of rest to get it back down. In the afternoon they did an echo and during the echo her neuromuscular dr stopped in to see her for a minute. A little while after we got back from the echo the heart team came to see us. They said there is some fluid on her heart and its beating really fast but they didn't see any structural issues with the heart. They said to follow up with them again in 2 years if everything stayed the same. The dietitian came and met with me as Jilli's urine output was still down from her baseline. They kept telling me it was within normal limits for a typical 4yr old however I kept reminding them that she is on a 100% liquid diet therefor we needed to go off her baseline. The dietitian said to add water during the 4hours the her feed is not running to see if for whatever reason her body just needed some extra fluids. Wednesday we switched nebulizer meds to Xopenx because it doesn't effect heart rate as much and doesn't cause tremors as much. It seemed to also help her lungs better however our insurance still has not approved us using it at home. My Aunt Pam came to visit and brought Jilli the movie Moana. Around dinner time Holly the art therapist came to see Jilli. CHW and RMH share art and music therapists so Jilli know them well and "Art Holly" is one of Jilli's favorites. They made poop emojis out of model magic together. Brent had also stopped at Target and bought some candy for the nurses and they made a sign together telling everyone that they could take some. We worked on sitting supported in the bed. They also came and said that her MRI show chronic middle ear fluid and sinus swelling. They started her on an antibiotic to try to clear those out however she had no signs of an acute infection (ears looked fine, no runny nose ect)

Thursday: We started the day with PT and she was able to walk to the playroom. Her heart rate was still really high but she walked. Then Jilli's home PT came to see her so she had an idea of where Jilli's skills were at. Her home PT was amazing through this all, calling and emailing me, giving us tips and working with the wheelchair company. Rehab came in and met with us and said when she was discharged they wanted PT and OT multiple times a week. OT came in and her tremors were still very evident. We came up with plans for different home things (bathes, dressing, ect) I was able to brush Jilli's hair for the first time in a week because it was the first day she was able to sit up long enough. Jaime and Emerson came up and brought me lunch and hung out. In the evening Music therapy came in. Jilli was so excited. I had to calm the music a little bit because it was shooting Jilli's heart rate up but at the same time it was so good for her mood. She handled the week like a champ but by Thursday night we was frustrated that her body was not working. They sang Fight Song together and I struggled to hold back tears. She was sitting and talking and compared to where she had been earlier in the week this was nothing short of amazing! Pooping also started to work on Thursday as we had to change her bed linens four times. Thursday was the first time she started to want to play with the toys people had brought for her and she started to look at her Easter baskets. Thursday was the day my heart was able to relax a little as we really saw steps in the right direction.

Friday: Friday morning at rounds we discussed a discharge plan. The goal was to have her therapies come and see her and then if she did everything well then she could be discharged that night. We discussed home oxygen since in the hospital she had been on it 24/7 (before this she was only on it while awake) and it was decided to keep her on 24/7 oxygen until we met with Pulmonology on Monday. Our insurance denied the new neb med so they sent it in inhaler form. They were able to send all the the new meds to the pharmacy at the hospital so they were able to bring them to the hospital room. They adjusted the dose of her L Carnatine while in the hospital from 1x daily to 3x daily. They also said they were adjusting the dose of her CoQ10 down a little because genetics said it was too high. PT came in and she went and played in the playroom her heart rate was high but not as bad as before. Our nurse from Special needs stopped back in on Friday and talked more. Jilli's MRI shows two cysts in the pineal gland in the brain. For most people these cysts are not an issues but we discussed that with everything going on with Jilli her medical team needs to at least have a conversation about these cysts and if they are having any impact. In the My in-laws also came to visit. In the late afternoon she was discharged to go back to RMH. The thought with that was she was close enough to get back to the hospital quickly if she crashed again. She also had several poopy diapers on Friday. As we were heading to RMH on the skywalk any time we hit a bump Jilli's pulse ox would stop working which was a huge issue for a child who currently needs to have her pulse ox monitored 24/7. I called the supply company and they ended up sending someone over and replaced the pulse ox. Friday night we ordered dinner in with the Smiths since RMH does not have dinner on Fridays. We also gave both kids baths. When we went to do night time meds we noticed the instructions for the new CoQ10 does were not clear so I tried to log into Walgreens because for some reason the med student sent a script there for the med eventhough it is a supplement and insurance does not pay for it (we pay over $60 a month out of pocket for it). Well apparently Walgreen's system was doing and update and it locked me out of my account. We decided to just give her the normal dose and go with that.

I will continue what happened next in the next post...