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