So lets go back a week.
Weekend: Last week Jilli and Caroline had zoo class together. They had a great time. On Sunday I helped Holly find a couch for their living room.
Monday: We decided it was best to not do PT on Monday to not stress Jilli's body before surgery. The girls and I headed out late morning to run a few errands and then head to RMH. In the afternoon Nate and Kirk came over to see us and the girls and have dinner with us. My parents stopped by after dinner to see us and we all went to music therapy. During music Jilli started to look very sleepy so we said goodbye to our guests and gave the girls baths and then headed to bed. Jilli always has a hard time falling asleep our first night at RMH but we got her to sleep around 11:30.
Tuesday: Lydia's pump hated us during the night and Lydia felt similarly. We got very little sleep. Around 5:30 I got up to do Jilli's morning meds since her pump needed to be turned off at 6:30 and she needed all of her meds first and for the pump to run long enough after giving them to make sure they came out the j part in her body. Jilli woke up while I was do that and very excited for the day. She was telling us that her monkey was nervous but that she was happy to hear better. She put on her super hero cape and her Children's shirt and was ready to go to the hospital. We headed to the cafeteria first to get some breakfast... Jilli kept asking if she could go to surgery yet. We headed up to surgery and did the check in stuff. We gave her a choice if she wanted "sleepy medicine" to help her go back and she said yes. Jilli is so funny on that stuff! We always have her laying down when we give it to her and then for some reason once it kicks in she always sits straight up and then falls over and I end up having to hold her because she starts flopping all over the place and saying things that don't make any sense. They then took her back for the ear tube part first. I headed to the waiting room and Brent and Lydia ran back over to RMH to get Jilli's shoes and braces because somehow she got out of RMH without any on!? While the ENT was in doing her part the GI dr came in and talked to me. We actually talked more about Lydia then Jilli since she is having more issues with GI stuff right now. Then the GI headed back for her part and then ENT came to talk to me. She said the ear tubes went in well and that there was no infection at the moment so she didn't need to have the drops put in! then Brent and Lydia rejoined me. After a little while they came out to get me to see Jilli. They said it was a sudden wake up for her and when I walked into the room she was screaming and acting like she was about to vomit which was strange for her coming out of surgery. She typically complains about pain after surgery but the retching was the worst I have ever seen from her. The nurse gave me report and she said the j was clamped and the g was opened to drain. Since she said that my mind went to seeing what other things we could do to make Jilli more comfortable. Jilli doesn't like her oxygen line run in front, she likes it behind her head so I moved that. I put her pillow case on top of the pillow because that is a big deal to her but she just kept yelling and retching. The GI dr came in to talk to me and it was hard to hear each other over the screaming. She did say that Jilli's stomach looks better then it has in the past so what we are doing is working. Her hernia looks better and the stomach lining looks happy. This was all great to hear. This reminds us that her being NPO and the meds she is on right now is the correct thing for her. The dr headed out and then I went to move Jilli and noticed the problem... the g was clamped and the j was open to drain. This is a BIG problem! The j should NEVER be open to drain and she was retching so bad because she was refluxing the blood from the biopsy they took. I corrected it and then slowly she calmed down. They moved her her the next recovery room and Brent and Lydia joined us. She was still not happy but realized that the state fair was at the hospital that afternoon and she kept saying she wanted to go to that. Eventually we got her calmed down enough to fall asleep for a bit. Brent and Lydia ran down to get us more coffee. In the early afternoon Jilli woke up and was handling j feeds ok so they agreed to discharge her before the State Fair started. We went down to the girl shop to get her a mylar balloon and grabbed some lunch. At 2pm the State Fair at the hospital started. Nate and Kirk joined us and Jilli liked the games and that her music therapist was giving temporary tattoos. She was tired but so excited. Lydia hated the clown! We ran into Jilli's rehab NP who prescribed the wheelchair and did the peer to peer with our insurance company and talked about how crazy this all has been. She said the guy from our insurance company was rude and that there was no budging. She said she didn't understand why this was such and issue to get it approve and that to her Jilli needing a wheelchair is an open and shut case and should not be taking this long. After the fair we headed back to our room and we all rested. We went up for dinner and then came back to the room and watched a movie as a family and then called it an early night.
Wednesday: Our team had all agreed that staying at RMH for 24hr after surgery was the best plan for Jilli. Wednesday morning Jilli work up and started having pulse ox crashes that would last several minutes while she was sitting still on oxygen. This is not typical for Jilli (she normally crashes when walking) and after several of these I called our team to ask what they wanted us to do. Lydia was also all over the place and wanted to get into everything. Nate and Holly came over so Nate could play with Lydia for a little bit. I heard back form special needs and they put a message to pulm to get their opinion. Pulm called back and said to do a neb and that they wanted Jilli to continue to stay close to the hospital and if anything else changed to go to the ER. Special Needs called RMH to let them know we needed to stay another night. We hung out mostly in the room but went to the art room for a little bit after dinner. Jilli continued to have pulse ox crashes, infact the neb made them worse for a little bit, but nothing else changed. She was in that stupid gray zone.
Thursday: We woke up and hung out around the house. Jilli did more art and only had one pulse ox crash in the morning. She was so excited to be there for gardening with Ann. Ann is so sweet and she and Jilli have a special relationship. Ann just had the garden path at RMH redone so that it is now more wheelchair accessible. Jilli loves gardening and was so happy. After gardening we worked on packing up and checked out of RMH and our plan was to head to Chili's to meet Nate's family for dinner. Well we got in the van and it would not start. We tried jumping it and that didn't help. After consulting with a few people we decided to have it towed. I called RMH to see if the girls and I could come wait inside and if they had a preferred tow truck. The managers were amazing. They sent me up to dinner and then told us since the car was needing to be towed that we could stay at the house until Friday so we could get things sorted out. They even helped me get all of our stuff back in the house. While I was talking to the managers Brent came up and said the tow truck company called and said that the car would need to be pushed out of the parking garage for the truck to be able to get it. The managers jumped right in and said they would help us and the van driver from RMH came down too. We worked together and pushed the car out of the garage. Then the girls and I headed to the art room since art therapy was going on. After that finished Nate's family came over and brought us food from Chili's. After eating food and them entertaining the girls so we could eat, they headed out and we went to bed.
Friday: In the morning my mom came up and we packed all of our things up again and loaded it all very tightly into her car and checked out of RMH. We headed over the the car place and they said it was the battery. Now we had jumped the car, all of the electronics worked just fine (ac, head lights, radio ect) and the tow truck tested the battery and it didn't look the battery was the issue but the guy said that with these newer vans they need a lot of battery to start and that he could take the battery that would not start my car out and put it in an older car and it would work for several years. The whole situation was frustrating but fixed and for not a ton of money. After we picked up my car we headed to Nate's house because it was his birthday and I told Holly I would help her with some cake decorating. We ran to the store and got supplies and Jilli and Nate made poop emoji cupcakes. We then needed to leave because it was also my dad's birthday and we were meeting my family for dinner. First we stopped at my house and unloaded mom's car of all of our stuff from RMH and then headed to a steak dinner. My dad and I share in common that we both love supper clubs and good steaks! The girls did well at dinner which is always nice. Lydia has hit the throw everything on the floor stage but she was not yelling or causing a seen so she was fine. We then headed home and got the kids to bed.
Saturday: I woke up and ran to Target to get some things that we needed for that day. Then I came home and we got the girls dressed and then we headed to Milwaukee for a wedding of someone I went to college with. It was a lot of fun to see college friends! Inbetween the wedding and reception we headed to the mall where the Sears is going out and found some good deals on clothes and hit the half price book store. We then headed to the reception and had a good time with friends and the girls did a great job at the reception.
Sunday: We got up and went to church and then met Nate's family at Olive Garden for lunch. We then headed to the Civil War museum. It was a very humbling place to be given the weekend our country just had. Jilli really struggled in the museum and just kept asking why so many people would make choices that were not of integrity. Holly and I talked as we walked through about how different the views of the war are growing up in two different places. After the museum we got on the street car and road it to the pop corn/ice cream shop and everyone got a snack and then we boarded the street car again and road it back to our cars. At this point Jilli's oxygen needed to charge and everyone we sleepy so we headed home. The girls played really nicely and Brent and I just sat tired on the couch. Our plan was to give the girls bathes but they were playing so nicely that it got late and we were frankly to exhausted from the week so we all headed to bed.
Monday: This morning the girls had PT. Lydia worked hard until she decided she was done and crawled over to her car seat and waved goodbye. Jilli worked hard too and had a good therapy session. We talked about plan for when our therapy location closes and for now we are going to make the drive solely because we love our therapists but we are changing our schedule and combining things. It is what it is. We ran to Target after PT to get a new planner for me, I just need to write plans out. Then we came home and my mom came over so I could work on cleaning some. Thank you to Annette who came over while we were at RMH and brought our mail in, took our garbage out and picked up Lydia's toys. Brent came home from work and said that the letter came about the wheelchair and the thinks it says it was denied. I literally felt like the air was knocked out of me and I asked for the letter as I read a lot more insurance paperwork then he does. As I read it I realized that they said we could not get one accessory for the chair but had to go with something that costs less money but that the wheelchair and smart drive were approved. I need to call the wheelchair place tomorrow to make sure they got the same info and then order the chair! This is amazing! At first it looked like they changed the wheel spoke covers but then when I looked at things closer (of course it just comes as a list of things that say accessory x amount of dollars instead of just telling you what each line is talking about) it looks based on pricing that it is the parent handle that they want us to switch to the cheaper since handle instead of the double handle and while I prefer the single handle it does not work for hanging the oxygen on the wheelchair and we need the double handle so we will likely be paying the difference but that is fine because it is only a couple hundred dollar price difference and in comparison to everything else that is being cover it is a very small amount. We are so excited. This is huge. I think the state also got that we were not going down easy. With their questions this last time we included a letter from her neuromuscular doctor stating that her mobility needs are life long and a multiple page letter from the Children's rehab team explaining why Jilli needs a wheelchair in great detail as well as the PT writing up a letter answering all of their questions. I think they got that we were not going to back down and that I was prepared to get more people to back us. Thank you to everyone who has been praying for this! This journey has been really stressful and it is not over yet until the wheelchair is in our house but I feel like today we won a huge battle.
So it has been a busy week here. The girl's PT told me today she was prescribing me a nap as I struggled to stay awake. Hopefully Lydia sleeps tonight because man that child makes her sister look like a good sleeper and its almost 11pm and Jilli is still up.
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| I am in love with Lydia's new dress |
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| Helping Holly and I shop for a couch |
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| We got room 110 at RMH which is my favorite because it has this awesome desk which made it easier to put things up away from Lydia giving her more freedom |
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| Jilli in music therapy |
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| Jilli watching an Q&A that her ENT did a few months ago about ear tube surgeries, she said her monkey felt better after watching it |
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| Using photo paper making leaf prints |
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| Our rocks in the garden |
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| Jilli on the new wheelchair path |
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| This made Brent and I cringe, as we were walking into the book store the music store next door was in the process of moving so they just loaded up a cart full of guitars without cases and smashed them together and wheeled them across a bumpy parking lot... |
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