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

I want to get this all written down so I have it for my records but I know there are also people that follow this blog that don't follow us on other platforms and to understand my last post it would be helpful to understand what all let up to it. I am going to take this day by day (I'm going to break this into multiple posts):

Friday 4/14
Jilli woke up saying daddy gave her too many meds the night before because her tummy was full. I told her that daddy did not give her to meds and that daddy had given her meds about 9hr before so if she was feeling full I didn't think it was that. She has GI motility issues and sometimes they are worse then others. That is just part of GI motility stuff. I just figured her motility was running even slower. She asked me to wait doing morning meds which is really really strange for her but I said yes and then about an hour later she was fine with doing her meds and I didn't think much of it. Part of me also chalked it up to the fact she has watched a few TV shows lately that talk about not eating more then you need to and I thought maybe she was trying to apply that into her lift since she really doesn't understand hunger/full. Our morning didn't go completely as planned but we ended up shopping at Target with my mom and then headed to Kenosha where Jilli and I got hair cuts, went grocery shopping and went to a birthday party. Jilli was tired all day but that happens in her world, she has days she is more tired so I figured it was just that. Since it was Easter weekend we were staying at my parent's. Around 10pm she went to sleep. Around 11pm I woke up to Lydia coughing slightly and noticed her drain bag was at a weird angle so I fixed that and laid back down. Jilli was sleeping in her comfy lift bed on the floor in my parents room. All of the sudden my dad walked into our room and said to come with him. I was rather out of it since I had only had about a half hour of sleep at that point and I was confused but then I heard the cough... that deep nasty barking cough and my mom senses kicked in. I scoped Jilli out of her bad and sat down on my parents bed. I sent people to get the neb and the pulse ox. Jilli was coughing and gasping for air in between the coughing. She would cry saying she wanted to go home. Jilli has had croup lots of times and thats what I thought we were dealing with. We started the neb and within a couple of minutes she stopped crying and went completely limp. We started calling her name and rubbing her feet and she was not responding. Her eye lids opened and her eyes rolled back. At that point I threw the neb mask off of her and ran her to the car. My mom drove as I sat in the back seat with her. As we got her in the car her eyes opened but she was dazed. She wasn't focusing or answering but at least had open eyes. We got into the Aurora ER around 11:30 (the whole thing at my parents took less then 20min) and walked in and said her name. As we were standing there the pulse ox was going off that her heart rate was over 180. The receptionist told us to take a seat and I said I was not sitting. Thankfully a nurse came out within a couple of minutes and took us back to a room. As we were walking the dr saw her and followed us into the room. He asked what happened and did a very brief assessment and asked me if I was ok if he called the Children's Hospital transport team and I told him to please call them.

Saturday: In the first ER they did the basics. They took a rectal temp and she didn't even flinch. Her eyes were open but she wasn't responding much. She tried to talk a few times but nothing came out. She just looked so helpless. My dad came over with all of the formula so we had that to go with us. A little after 1am the ambulance crew came. I could tell by Jilli's face she was worried. They had one of the Children's receiving blankets with them that has hot air balloons on it. Jilli knows those blankets are from Children's and her body calmed once she saw them. They took her blood sugar without much of a reaction from her. They loaded her up and we were off. My mom drove behind us and they had me ride in the front seat. Riding in the front seat of an ambulance is a very helpless feeling. I couldn't really see her heart rate and such and normally I am the one who observes all of those things. Thankfully my friend Holly and my cousin Annie were both awake at that hour and were texting with me on the way. At 2am her pump went off but of course in the middle of the night on an ambulance your first thought is not the normal beeping sounds but the worry. Thankfully it was just her pump. We got to the ER and they quickly brought her to a room that filled with people quickly doing vitals and taking report. They gave her a dose of steroids and she stared in the direction of the TV but was not watching it. She was dazed and didn't answer most things you asked her. What she did answer was by pointing or moving her eyes... she was not talking. Her body was weak. The attending came in and talked to us. A while later the resident came back in and said he thought it was just croup and since she has an underlying muscle disorder that is likely going to get worse that maybe this is just what happens now when she gets sick and we were just going to have to accept that this is just the way things are now. I informed him that I am well aware that they think she will degrade over time however the events that happened were not something to just blow off and that I was not comfortable taking her home while she was still barely responding to people and that I was not just going to accept this. He went out and talked to the attending and came back and said he talked to someone on the floor and they agreed to take us for a couple of hours of observation. Honestly I think he was just getting me to shut up and be someone elses problem and at that moment I didn't care because I was not taking her home. At 5:30am she finally fell back to sleep (she had been awake since she had passed out).. A little before 6 they transferred her up to the 10th floor. A doctor met us there and said that dr teams switched at 6 but after hearing her story he wanted to get eyes on her right away to make sure she didn't need to go to the ICU. Thankfully he said she was stable enough to stay on the 10th floor. Brent came up around 8am and brought clothes and such for my mom because she had a presentation she needed to give at a local school. Thankfully since it was the weekend Lydia was able to stay with my dad and brother. About 14hr after this all started we heard Jilli's first word again but when she would say something it would only be a world or two and most of the time didn't make sense. She spent most of her time looking at the wall with a dazed look. She would respond sometimes with pointing but most of the time she just laid there. Doctors were struggling to understand what her baseline was like and kept telling me that maybe this is just how she was now. I kept saying no. In the late morning we realized Jilli had not peed in hours and it was dehydrated even though her normal tube feedings were going on. It was decided that an IV needed to be started. First they called in the transport team however they were unable to get it after a couple of tries. They tried to call in anesthesiology however they were all in surgery. They ended up getting someone from the ER with a special machine to come up and they were able to get it. We were doing nebs every 4hr because every breath she took was labored. We had her on 1lpm of oxygen 24hr a day instead of her typical which is only when awake. She was soaked in sweat but her temp was 97. Her heart rate was really high. Overall she looked really rough. A neuromuscular happened to be the oncall neurologist that day and he came in and we talked a little bit but they were trying to put the IV in so he came back later. A group of our family and friends had signed up to serve dinner that night at Ronald McDoanld House and I was supposed to be leading it however everyone stepped up and took care of it. We are so blessed by the team of people around us. My cousin Jess and her hubby Ryan stopped by the hospital before they went to RMH to drop off a coloring book and doll for Jilli. My friend Stacy drove from 3hr away with her parents and oldest daughter to help with dinner. Stacy sat with me while everyone else made dinner. My friend Holly had also come over to the hospital for a bit and the three of us where in the room when the neuromuscular dr came back in to talk with me more. He was a little confused because he is Stacy's daughter Caroline (Jilli's best friend) neuromuscular dr and he has worked with Holly's son Nate before and it was really confusing his brain why the three or us moms were all in the room together and we explained to him that we are a team of medical moms who all support each other and each others kids. Neuromusclur dr are smart. Like think of Dr House smart without the attitude issue. I was following the conversation but at that point it was hard after having only gotten a half hour of sleep the night before. We came up with a plan of a couple of meds to try but nothing would start until the next day. After dinner my dad, brother, Dan, Lydia, Brent and my mom came over. It was good to see Lydia, I had missed her. Dan brought Jilli a Duplo set she had really been wanting for a while and she showed us again how sick she was by pointing to the table for us to put it on. She didn't even have the energy to get excited or hold the box. Everyone else left but my mom and we started to get ready for bed because at that point it had 37hr and only a half hour of sleep. We did Jilli's 10pm meds and it looked like she was going to bed and then she started to scream. Intense pain scream and pointing at her butt and wouldn't let anyone touch her stomach. She was having intestinal spasms. She screamed off and on for 10 minutes and then fell sound asleep. One of my most vivid memories of tat day was Stacy, Holly and I just sitting there in shock saying this just couldn't be the new normal. We all felt crushed. I missed Jillian so bad even though she was laying in the bed in the same room... it was just like a shell of her. I was also thankful for music videos that other hospitals had made because that made all the IV tired easier.

Sunday: My mom stayed with us that night. In the morning Brent, dad, Seth and Lydia went to church. After church Brent went home and got stuff that we needed and brought it up to the hospital. Jilli spent most of the day looking at the wall still. She said a few more words but not much and most of what she said did not make any sense. She got very upset anytime anyone said the word Easter so we ended up banning it from being said in the room. In the afternoon Brent went over to rmh and check himself and Lydia in. Dan came over with a few things from his mom and in the evening Holly, Nate and Kirk came over with a basket for Jilli. She was still to worn out to even look at it. Closer to bed time she got really irrational and it took us a while to figure out that she thought we brought her to a different hospital because she came in through the garage doors in the ambulance and not in any of the entrances she knows. She panicked and wanted to go to her normal hospital and she was not understanding that is where she was. During the day we tried a different med to see if it would help and it looked to for about 10min and then she went back to sweating and not really talking. She was still unable to sit up and just laid still in the bed. A few more doctors joined the tune of this might be the new normal and I just kept saying no. My parents headed home and a while later Smiths and Brent and Lydia headed back to rmh. A little before 10pm the stomach spasms started again and this time it was so bad the nurse paged the team for pain meds for her. The screaming lasted over a half hour until the meds took effect and then she fell alseep. She was still doing every 4 hr neb treatments and continuous oxygen but they had bumped her down to 3/4lpm. She did start peeing again on Sunday however there was not any poop. They also did a blood draw to look at her lactic acid levels and it came back the highest it has ever been for her. Normally when she is getting tube feeds her lactic acid level is within limits. If she is fasting it is high. This one was high while on feeds. They tried to blame that on other things however she had every symptom of lactic acidosis.

Monday: In the morning Brent brought Lydia over. Smiths came and visited for a little bit after Nate's labs. My mom came back up and Jaime, her mom Heidi and Emerson came up to visit. Jilli just laid in my arms most of the time drenching us both in sweat. Jaime has known Jilli since before she was born and was a good set of eyes on her to see how different she was. Jaime also brought up a pack n play so Lydia could play in that and not on the germy floor. Heidi brought us a gift card for food in the hospital and they brought me lunch which was amazing! Neurologists changed that day and they also called Jilli's neuromuscular dr to get his input. He drew some more blood and requested an MRI however that didn't happen until Tuesday. Her heart rate was still high (150+ at times while laying) The new neuro and I also talked about what my requirements were for discharge and he agreed that what I was asking was all very reasonable which was good to hear because the floor doctor just kept talking discharge and this just being life now. Our special needs nurse and doctor came and checked on Jilli and since they know her and they know her baseline they understood how far she was from it and agreed that she needed to be in the hospital and we needed to figure a few more things out. We also started her on liquid albuterol. Albuterol is normally used in nebulizers (and she was using it in that too) but in liquid form it works with muscles. There was worry that it would send her heart rate even higher so we watched her closely since she was on both the liquid and the inhaled form. Her heart rate stayed high but didn't go any higher then it had been. In the afternoon Stacy and Caroline came. This was another time you could tell how sick she really was because while she smiled when Caroline came in she didn't get up to play. She was still unable to sit. We laid the two girls in the bed together for a while and they watched TV holding hands. It was so sweet. My dad came up after work and one of our ministers and his wife also came to visit us. We are so thankful for all of the love and support. We also gave her a suppository to help with pooping as well. In the evening she started to talk a little more which was amazing. In the evening Brent and Lydia headed back to rmh, dad, Stacy and Caroline each headed to their houses and mom stayed with Jilli and I. Monday night they tried to stop nebs however she started coughing so badly we had to have to team paged to restart them. She did poop but it was really thick and several hours after the suppository.

Tuesday: Tuesday morning felt like the change we needed... the floor dr for the week changed. It is not that the first dr was bad, she was nice but she didn't understand Jilli or how far from her baseline she was. Tuesday morning we got Dr. Hahn who is the dr who was on when Lydia had her first hospitalization where we placed her NJ tube. Dr. Hahn has walked the journey with us before and knows Jilli's baseline better. I felt like the conversation changed from sending her home to how do we best help her. They called in PT and OT to do an eval. PT was able to help her sit but it was very unsteady and she had a very strong tremor that she didn't have before this all started. Our home PT faxed them her most recent progress note so they could see in medical terms what her baseline gross motor skills were like. My friend Bethany stopped by as her little guy was at CHW as well. Doing anything on the iPad was hard for her and she tried to play with Duplos but really struggled. In the late morning they took her down for her MRI. They said they were doing it unsedated because they didn't think she was safe enough for sedation. She did most of it fine but then started to cry so they had me gown up and sit next to her and then she was fine (I also promised her another non latex balloon for her room). Tuesday we also had to deal with the fact that our insurance company called and didn't want her to be in the hospital anymore but thankfully special needs was able to get that taken care of. I think part of the issue was the the hospital still had her listed as there for observation. In the afternoon she was exhausted. Tuesday afternoon rehab also came in to talk with us. She read past notes and came to see Jilli. Jilli couldn't even keep awake while the rehab dr was in. The dr said that from a rehab standpoint Jilli needed to be in the hospital so she could get rehab level care to try to get her back to her baseline. We also did a second suppository since she only had one poop from her first one. It produced a little more poop but still not much. Tuesday I was not included in rounds. I think it was just a med student being a pain but I was really frustrated.

I am going to break it here and continue the story in the next post