We were on the 11th floor of Children's so we had a great view and the landing pad for Flight for Life was right outside her window! Two helicopters landed and that was enough to get Evelyn out of bed to go see them. It was the first time she'd been upright in over 24 hours! She liked that alot
We spent all yesterday just reading books and watching Cars. I guess their night went okay but someone kept coming in like every 40 minutes so they got no rest. Her fever went away during the night luckily so no infection! She tolerated her formula well and had no vomiting or gagging issues
We tried getting her to drink or eat even good things like cupcakes but she didn't want any. We did get a few sips of white soda in her which was enough for them!
Then the dietician and home health care came in and informed us that while the insurance company covers her pump and all supplies and her hospital stay and her surgery, it does NOT pay for what goes in the tube. Figure that out! Stupid insurance companies. The Peptamin JR which she did so good on is $7.00 a can! And she needs 2 cans a night. There is no way we can ever afford that. I was so mad. I asked if she was on Medicaid if they would cover it and she said yep, 100%. Ok, so the government who has no money will pay for it for me, but the insurance company I pay tons of money to won't? We need to get her on Medicaid soon but it's a 4 month wait. So they switched her to Kid Essentials which is cheaper (about $13 for a 6 pack) but she still takes 2 a night. We are gonna be poor! They *think* the insurance may cover the Kid Essentials but so far no one has found out and we have to pay for it. I'm mad cause I want her on the Peptamin. It's dairy free. The Kid Essentials has dairy and we are setting up ourselves for problems by doing that. I anticipate her constipation coming back full force! But there's nothing we can do. Atleast not until she gets accepted for Medicaid.
They let us go about 4:30 pm. It was a longggg process to get discharged but we made it. We had to figure out the carseat situation since her tube is right where her strap and chest clip lay. I turned her back rear facing so that she isn't getting a strap pushing into her tube every time we stop. I also took off the chest clip which is recommended for special needs kids with feeding tubes. It looks strange without it! When she's having less pain, we'll turn her back forward facing without a chest clip. Her seat is a European seat and the European version doesn't have a chest clip so I'm comfortable not having one. However, this is NOT something the general population should ever do. It's a risk/benefit things for these kids
We got her home and then home health came to drop everything off. Then Katie came to drop off Sophie who we missed soooooo much! She looked bigger already! :) She had fun and Katie said she was a good girl and slept and ate good!
We put Sophie to bed and then started Evelyn's routine. We needed to clean and bandage her tube, give her her pain meds, secure the tube and get her feeding set up. It took longer than I thought. She's still hysterical while we mess with the tube and it takes two people to do it. She screams and gets all sweaty and grabs at the tube. She doesn't realize her crying makes the pain worse!
After some mishaps we got her feeding hooked up. She had a hard time going to sleep. She was afraid of the IV pole so we had to take that out. Then she was afraid of the backpack her pump was in so after a longgg time Patrick finally had to just leave her in there to cry. She cried 2 minutes and was fast asleep.
We had to get up after 8 hours to shut the pump off cause she only gets fed for 8 hours. So we have to get up at 3 am for as long as she has the tube. That will be fun with a newborn! I guess it feeds her a little less than 8 hours cause I woke up to the pump beeping and Evelyn crying that the smoke detector was going off :)
We gave her some Tylenol in her tube and flushed it and made a good mess. We still are getting used to it! We convinced her to go back to sleep after snuggling. She slept then until 9 am!
She didn't eat breakfast or a snack and wouldn't drink much today. We forced her to go outside and we held her outside. Then Patrick took them for a wagon ride and he got Evelyn to walk a little! She's refused before this point. It hurts her stomach too much.
After that they came in for lunch and she ate 2 tortilla chips, drank some of her new high calorie juice boxes and ate half an oreo. Healthy huh? It's all we could get in her and we want to make sure she keeps eating so we do what we have to do. She's back in diapers which is a bummer but maybe when she feels better we can re potty train her!
Shes napping well now. I have to go back to work tonight. I couldn't get off since I'm still so new. But Patrick's mom is coming to help Patrick since he can't handle both girls himself. Evelyn still requires one on one care and it's not fair to make Sophie sit and do nothing since Evelyn can't do anything. You also need 2 people to clean and get her all hooked up for feeds since she fights it so much. So his mom will be able to play with Sophie and help Patrick get Evie ready for bed.
We are bummed about missing all the 4th activities tomorrow. Evelyn just loves parades and fireworks but theres no way we are gonna get them up. She can't even walk yet so it's just too much. Maybe we can convince her to let us take her to a parade in the stroller or something
So that us up to date! The home healthcare nurse is coming between 2-3 today for E's first visit. I wish her luck! This child is a fighter now!
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