Hospital Follow up

This is a continuation from:
Part one

Part two


Saturday: Saturday morning I woke up to Jilli pooping so we cleaned that up. Then I called Walgreens to try to unlock my account but their system was down so they were unable to unlock it. I called the Walgreens that the med student sent the CoQ10 script to and figured out that they cut her from 400mg a day to 240mg a day. I thought they were doing a little cut, not that much especially on a muscle med. I sent an email to Special needs to ask for direction. (GI weighed in on Tuesday to keep her at the Pre admission dose because the dose she was on was based on blood levels and observation and that she was on the right dose)Friday night we also realized that we had all of the batteries and power cords for the portable oxygen concentrator but not the concentrator itself somehow was still at my parents (we had tanks with us) so my mom brought the concentrator up after brunch. While we were waiting for my mom we headed down to the art room where Holly and Jilli made a bracelet and then we went into the playroom. Jilli sat on a chair and was playing with the toy barn and all of the sudden I look down and there is poop running out of Jilli's diaper, down the chair and all over the carpet! It was poop to her toes and hair! Holly took Lydia while Brent and I got everything cleaned up! I also realized that I had the girls dressed for Lydia's baby dedication on Sunday however it was a little chilly and the dresses were sleeveless. Mom, Holly and I ran to the store to get the girls sweaters. We came back and had dinner and then headed to bed. It was the calm day we were all needing.

Sunday: We got up in the morning and got the girls ready for church. Holly came down with us since that day was Lydia's baby dedication. After church we went to Ruffalos for lunch. Then we headed back to RMH. Once we got back to RMH Jilli started having aweful intestinal spasms again so Brent went to the store and picked up pain meds for her. We use pain meds as little as possible with the girls but she was balling in pain. We spent the rest of the day relaxing.

Monday: Monday morning Jilli had an audiology appointment. It has been debated many times if Jilli has a hearing loss. She frequently asks people to repeat themselves and gets very frustrated. Also if some of the guys that we know have a cold she can not hear them. She does not react at all to the loud sounds of fire works. We have been to audiology many times and sometimes they say her hearing is a problem, other times they try me it is her behavior (?!), this time they said they believe she has frequent inner ear fluid that effect her ability to hear however because the ears are not infected they had not recommendation. Needless to say I left frustrated once again. I know she struggles to hear. We headed back to RMH for lunch. The girls laid down for a little bit and then as we needed to leave for pulmonology Jilli pooped all over the bed. I cleaned her up and ran over to pulmonology (amazingly we were less then 5min late) In the running I forgot to grab the oxygen form to the air plane (we leave for Disney world soon!) so Kirk and Nate brought it over for me. The dr asked about what happened with Jilli and she said there is no way that croup cased what all happened and I agree. She asked about all the messages she had gotten about the portable oxygen concentrator (poc) rate. The POC we got is in 1/2l increments however Jilli was using 3/4l on tanks. Special needs and I had messaged them asking what setting to use and eventually a nurse told us to use 1lpm when using the POC and 3/4lpm the rest of the time. I told the dr that is what the messages were about and she told me that I am the mom and can do what I want. I understand that however I also know that we need a script for oxygen and it needs to say the correct dose. Also when in the hospital I need her to have the right dose in the computer. I also know I can get in big trouble if I set it higher then they approve because that would be considered over medicating my kid. So while yes I am the mom and I am the one who physically sets things, I need her to approve. At this point I started to get frustrated because I felt like the dr kept trying to leave the room and I still had questions to ask. I ask what to do about the pulse ox and 24/7 oxygen (before the medical incident she was only on oxygen while awake) and she said we could do a test in July to see if she still needs it. If that is what she needs that is fine, I just felt like her answer was off the cuff. I also asked about allergy med dose and she said to do the normal Jilli spring and wait to adjust Lydia until she has a problem. I know reading this it probably doesn't make sense why I left frustrated but I had several other questions to ask and felt rushed and several of my questions didn't get answered. We then stopped at Cafe West and I got a snack and then headed back to RMH. I had told Jilli if she left her pulse ox alone until pulmonology (I really thought she was going to say to just watch it a couple more days) that we could go to the magic room after pulmonology so we headed to the magic room with their tokens. Jilli got a game and Lydia got a baby toy guitar. We had dinner and then headed to music therapy while Brent worked on washing all of our bedding. Jilli was the only one in music therapy most of the time and she had a great time with Melissa. We then headed upstairs and went to bed. When Brent changed Jilli into her pajamas he realized that she had started a yeast infection in her diaper area so Tuesday morning I called and got her some cream for that.

Tuesday: Jilli's PT squeezed her in at their New Berlin location at 8:30 so we headed over to that. She worked hard but it was really hard for her to just stand and do a puzzle. We then stopped at Dunkin Doughnuts and picked up doughnuts to bring with us with a thank you note to IR. Before that we had some down time back at RMH and I worked on packing and Jilli and Nate did some art. We then headed over to IR and Brent met us on the way. Jilli was excited to give them the doughnuts. Lydia did get and was switched to an AMT GJ button!!! Jilli cried a little while doing it however she had a little irritated spot next to her tube. I realized that while she was in the hospital her pad and tape did not get changed as frequently as at home and for Jilli that can cause it to get a little yucky looking. Thankfully since change out it is looking just fine again. Once the girls were done we headed back to RMH and packed up and checked out. We stopped for dinner on the way home and then got home. Once we were home it was figuring out how to manage 24/7 oxygen and pulse ox at home in a multi story house. Someday we are going to need a one story house but there are student loans that need to be paid off first. We were so tired once we got home Brent and I seriously debated us all sleeping in the living room to make it easier however the girls can't sleep flat so we worked together and figured out at plan for everything in our room.

Wednesday: Jilli had PT at 9am in Elkhorn. Her PT reassessed her skills and at that point we threw out all of her current goals and pretty much reverted to her goals for 2 years ago. That was a hard hit to my heart. We then headed to the ped office for Jilli's follow up. It started down pouring rain as we pulled in to the point we were dripping wet when we got inside. We talked about her tremor since it is still pretty significant. We talked about what audiology had to say and she said that is not acceptable to her and put in a referral for ENT. We discussed how since starting the antibiotic Jilli was pooping stomach acid and it was flowing out like water. I explained to her that they put Jilli on the antibiotic because of the MRI shoeing chronic sinus swelling and she said that you take a certain percentage of people and you are going to see that on a group of them. Since Jilli still had zero signs of any infection she said to finish a 9 day coarse on them but not to do the full 14 days like first prescribed. I was thankful even more for that in the afternoon when Jilli had a waterfall of poop flowing off our couch! The doctor felt bad for all of the things I was lugging around with the kids and she helped me get the kids to the car (it had been raining so bad we didn't grab the stroller, I just grabbed the kids and all of the stuff and ran). We did oxygen delivery when we got home and I started working on the have tos. The mail and and such that had not gotten taken care of while we were gone. Wednesday afternoon Jilli and I ran to Target to get milk and bread and such since that stuff went bad while we were gone.

What other things are going on:

-Jilli's PT called the wheelchair place and they said that they had not written the letter of medical need yet!!! Rehab gave them all of that info in February!!! I said they had until Friday to pull themselves together... I called on Friday and no one has called me back. It looks like we are shopping for a new wheelchair place. Buying a wheelchair for a kid who needs one should not be this hard!!!
-Friday I called in our monthly feeding tube order. A little while later the lady called me back and said we could only have pump bags and extensions from now on. I asked why and explained that we use 20 syringes a DAY here and up until now we have only been getting up to 30 syringes a month total between two kids. We wash them and reuse them until you can no longer read the numbers or the stopper breaks off. She said they signed a contract with our insurance company that our insurance company will only pay them $5 a day for feeding tube supplies and they are claiming that pump bags and extensions (which we also wash and reuse until they no longer will come clean or start to grow stuff) come close to using that amount so they will not send us anything else. I tried just ordering 5 syringes for Lydia and was told no. I asked them why is state not picking up what primary is denying and after going around a few times it came out that they wont send the rest of the amount to state because our primary is not denying it they are just refusing to send it because it would cut into their profit. This is where I became really frustrated and told her I would be calling her back after I talked to people. I sent Brent a text venting and he called me. I explained it all to him and he then called and got the same run around I did. A manager is supposed to be calling him back to discuss this more. The person I talked to told him that syringes are not medically necessary!!! Hold up... umm yes they are, how else are you expecting to get exact measurements of meds into a feeding tube? Yes we wash and reuse so we have extra right now but if they stop sending them then it is going to be and issue. We have two insurance so this is not an issue and everything the med supply company is saying just feels wrong. I contacted the insurance company also and they are supposed to be calling me back at somepoint. Hopefully they do because this needs to get figured out.
-I also called the oxygen part of the med supply company (yes one company that I have to call different numbers for to order oxygen and feeding tube supplies) and asked for them to bring 7 large tanks since one of those lasts us a night since the big concentrator is way to large to be bringing up and down the stairs and the travel one is not meant for that much use (the oxygen company does not know we have the travel one) and the guy told me that I am just wasting tanks!!! 
-We are still waiting to hear if insurance is going to pay for Jilli's new neb med
-This week Jilli has an OT eval and two sessions of PT. She also has a neuromuscular appointment. They got us in a rush spot after what happened so we can meet with the dr and come up with a plan. She also goes to Shriners in Chicago this week for her 6mo leg braces check. It is going to be a crazy week!
-We are also working on getting ready for Disney World as we are leaving very soon! My parents came over yesterday and my mom and I worked on packing bags. Traveling with the girls is not light and takes a lot of planning but boy do we all need a vacation so bad. It is a good incentive for Jilli to work so hard right now. We are still mentally trying to figure out a POC with 4 batteries that each last a little over 2hr and a pulse ox with a battery that lasts 8hr and how we are going to manage charging everything but we will make it work. Jilli and I decorated our magic bands this week as well. They came while she was in the hospital and I had promised her that once she was home we would decorate them together. Brent is such a great sport and so good at being a dad to girls, he let Jilli decorate his magic band and while we managed to do it without princesses it still has Jilli's mark on it.

So this week we just keep chugging. We just keep doing what is best for our girls. We keep advocating for what is best for them. It is all worth it!

Right before the poop volcano

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...

You did not just catch me playing with the remote you told me not to play with...

We spent a lot of time holding her hand

Lydia did great with the crazy of the week

Jilli in the echo

Art therapy

cuddles

The sign she made with art Holly and the chocolate

Star Wars pants are good in the hosptial

In the play room with PT

On a walk

Her balloons

Sitting in bed playing

Doing a neb while signing

Music time

We wheeled the girls down to the end of the hall to look out the windows

Jilli was excited to sit in her loan wheelchair

We put the iPad in the end of the bed. She watched a lot of music videos from hospital and some silly songs

Her best friend mailed her poop emoji pajamas

Leaving the hospital

cuddling back at RMH

Lydia in the kitchen at RMH

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

In the ER in Kenosha

In the Children's ER

When we got up to the room

Nate visiting her

Stacy brought pictures and notes to decorate Jilli's hospital room

Jilli and her bell doll

mommy snuggles

Daddy bought her a dino. Her and that dino were best friends

Lydia in her Easter dress

Sleeping baby girl

Bumpa snuggles

Watching TV with Caroline

Auntie Jaime brought her a Unicorn

Jilli sitting with PT

Lydia in her new outfit from Aunt Jaime

Jilli and daddy doing a look and find book