I am sorry now if I sound whiny... At this point tonight I am a little whiny... I'll own it :)
1. Started the day by talking to pulmonology. They called me back on the way to Children's. They want us to up her oxygen to 3/4LPM. Hopefully this helps. I need to figure out how long a tank lasts now... Thankful that they were quick in getting back to us
2. Jillian's dental visit went well (once we got there, oxygen decided to come early, my brother was coming to wait for it and instead the guy showed up right as I was trying to leave thus making me get out of the house later then I wanted, plus my poor brother was just about to my house so he had driven all that way for nothing, and then I had to stop for gas because I did not realize how low I was and then proceeded to hit every red light on hwy 100 between Layton and Watertown Plank) Even though it is still in the Children's system I still had to fill out background paperwork which for Jillian is not a fast thing. We got back into the room and they did a great job with Jilli. She did amazing! At one point they were using a tool on her teeth and she very calmly told them that she was done. They asked if they could have three more seconds and she agreed and then once their three seconds were up she closed her mouth, but for everything else she did great. She was excited to sit in the chair by herself. The dentist said her teeth look great. There are a few alignment issues, probably from the passy, but that is what it is. It helping her keep stomach acid in her stomach is more importation to me and while the dentist mentioned that it is not great for her teeth she was not a jerk about it. She said that overall her mouth looks really good! Because of that they did not feel like they needed to put anything on her teeth or do anything with any liquid. They gave me an option about one thing but said they did not think it was needed at this time so I said that I would prefer to only put liquid in her mouth if we have to and they agreed and did not push the issue. Yeah!
3. Genetics sent me a message back that their receptionist schedules visits for the clinic for "this" in three month increments and that we are on the list but she is not sure where Jillian's name will come up but that we should be contacted in the next few MONTHS!!! My blood pressured might have went up just a little reading that. I don't think you can call it triage if it takes this long! I also asked about the re-reading of her exome sequencing and she said that she can submit for approval from insurance for that but she thought our only insurance is state so she told me she does not think state will pay. I am thinking that our primary insurance will pay... hopefully! I don't know if we will have an appointment with genetics for the re-run, or how long it takes to get insurance approval or re-running it takes...
4. As I was leaving dental I went to use my phone to call GI because Jillian has not pooped today and her poop yesterday was very small and thick (not normal) so I am thinking we need to do something to clean her out... however when I grabbed my phone the home button was so hot it hurt to touch and the phone had turned itself off and would not turn back on. I went to the car to try to use Jillian's ipad to call Brent however I could not get it to connect to the Wifi so I drove to Starbucks where is also struggled connecting to Wifi (we never use Jillian's small iPad on Wifi in fact Wifi is normally turned off) I tried from the Target parking lot but could not get it to connect so I went into Target and finally got it to connect however it would not let me use iMessage or Facetime to contact anyone. I finally ended up getting Facebook to work (mind you this had been almost an hour of trying to get this thing to connect to Wifi and let me contact someone). I sent a message to both Dan and Brent since they work together and begged for help. I did not want to drive an hour home 8mo pregnant with a medically complex child and no phone. They got my message and Brent came over to Target as Jillian had one of the worse melt downs she has ever had because I threw away my receipt from my drink because she told me she was done playing with it (I think everyone in the store heard my child screaming...) She has had a couple of melt downs lately that are just odd for her... it is just part of her body being off. The home button was still really hot but Brent did his IT stuff and got it to turn on for a little bit but we decided that having a phone the overheats and turns off is not a safe plan and I pay for Apple Care and we were by the Apple Store. So we headed over to the mall. We checked in at the Apple Store and the said the wait might be up to an hour. We had dinner plans tonight with Brent's family in Kenosha and at this point we knew we were not going to make those so we called and let them know. We walked around the mall for a little bit hopeful that it would be quick any maybe we could still make it to Kenosha and at least say hi to grandpa since he just got into town. By 7:30 they still were not ready for us. I went and grabbed a sub from Subway at that point because I had not eaten since 11am (I was behind a family were I am still impressed that hangry pregnant Amanda did not come raging out as a school age child was being beyond disrespectful to the staff at Subway and the mom was just standing next to her letting her child talk to the staff like that and hold up the line... but I stayed calm... annoyed on the inside but calm on the outside). Finally a little after 8 they were ready to look at my phone. The guy tried to give Brent some stupid answers for the problem with my phone (Brent works with technology, you are not going to pull over something stupid like the guy tried...) The guy then took my phone into the back room. At this point Jillian had enough. She has basally been sitting since we left the house at 12:30 and it was now after 8. She had done really well except for her melt down at Target and had sat like such a big girl and not made a fuss while we waited for over 3 hours to get my phone looked at, at this point she needed bed. I honestly was done too. My body hurt from walking the mall. Brent gave me his phone to have on me to drive home and Jilli and I left. The whole way home my body decided to tell me it did not like my choice of Subway for dinner. In the end they swapped out my phone after Brent made it clear to them that me not having a working phone was not an option (I had just got the phone the end of September) He takes good care of me! He just got home a little before 10, just in time to hook Jilli up for the night (she fell asleep in the car) This was not how I wanted to spend my night!
5. Because my phone was dead when I came out of dental I was not able to call GI before they closed for the day so that is on my to-do list for first thing tomorrow. We need to get poop out of this girl!
So that was my day. I am ready for bed now and here is to hoping tomorrow is calmer. Sometimes there are just days... and today was one of them!
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