Im pausing the Disney reports to do a normal life post. Our internet has barely been working since Wednesday (tree leaves grew in the way so when the wind blows just right we have internet and then when the wind changes well...) so I don't have enough to upload pictures from our trip so I am hoping to venture to Starbucks or somewhere in the next few days so I can blog the rest of our time at Disney and finish making the Shutterfly books. Oh country living!
But smooth transitions back home after vacation apparently is not our thing (last time we went to Disney we came home to results that genetic testing came back without answers) and this time Lydia decided to start us off rocky...
Our plane landed very late Saturday night and it was early Sunday morning before we were back at my parents. Sunday morning my plan was to let the kids rest. It had been a busy week. Lydia woke up at 8:30 and played a little and then started to look very tired. My mom was holding her and said she started to feel warm. I took her temp and it was 100.7 which isn't too high, just keep an eye on it level. She was very tired and not like herself. In the afternoon she started to vomit green bile. Brent and my dad had gone to Brent's dad's birthday party and as soon as the guys got back we headed home as my tummy didn't feel great. That night we were up with her a few times crying and Monday morning I woke up to her vomiting. We figured she had a stomach virus of some sort. As the day went on Monday she started acting like herself. Tuesday she was fine all day. Wednesday morning Jilli had PT and while we were there Lydia bathed me in stomach bile and had bloody drainage from around her tube and in her g drainage line. I called our GI nurse and her voice mail said she is out of town for 2 weeks so others would be covering her calls. I then called special needs and left a message there. Special needs called back a while later and said that how everything was presenting was very strange and they would send a message to GI and talk to the special needs dr. In the afternoon a GI nurse called me back to get more info. She was nice but didn't look at the chart at all before calling me to know that we are not brand new to feeding tubes and that we understand how they work. While I was on the phone with her Lydia vomited bile again. In the evening the nurse called me back and said that the dr had sent a script for Carafate to a pharmacy and to try to give that for the bleed. Our last insurance required us to use multiple pharmacies so after I hunted down where the med went to I got it picked up. Carafate coats the stomach so when we put it in the g extension it just wanted to coat that instead of the stomach. Brent found a little piece that they had at the hospital that connected a slip tip syringe into the g port of the gjet so we were excited to have direct access. He gave her the med at 2am and at 3am I woke up to her vomiting bile all over. I gave her the med around 8:30 yesterday morning and she vomited the med all over at 10:45. She had a small vomit again yesterday around 12:15. Since then there has not been any more vomit that has come out but there has been a few close calls. She woke up at 6 this morning with stomach pains and is laying in my arms right now and every few minutes will start thrashing and pulling at her tube. I contacted special needs again yesterday and they said they are differing to GI. I sent a message to GI and have not heard back. I did notice a new tooth yesterday (the one next to her front bottom) so that might explain Sunday's temp however she is not drooling hardly at all so I don't think it is extra saliva causing the vomit and that wouldn't explain the blood. Sadly yesterday that handy little tool went missing so I rigged something up but searched the house first as the piece is little and I worry about little hands finding it but had not luck :( Thankfully creativity pays off because I figured out a different way but cutting and attaching other things.
Yesterday we also had our Katie Beckett insurance home visit. I think it went well. I am so thankful to Charity and Nancy for coming over and helping me get the house ready for that. The play area is all cleaned and organized and the living room too. I am so grateful for their help!
Yesterday we got a letter that sent me into tears. Insurance denied Jilli's wheelchair. They said that our plan only covers wheelchairs if they are the main mode of transportation in the house and the house is accessible. For Jilli the wheelchair is for community use and she can walk around the main floor of our house. Our house is also not accessible. We live in a split level house that in order to get in you have to walk up stairs. The bedrooms and bathrooms all required you to go up stairs. Our goal is to move someday however we have to pay of student loans first and finding an accessible house is not easy so we will likely need to build which will take more money. We will get there eventually but that is not something that is happening this week or even this year. Plus there is work that has to get done at our house before we can sell it. The letter was a knife to the heart. Yes we will appeal. We have an appointment on Tuesday with rehab and we will come up with an appeals plan then. Its just the hoops. Its the fight. We are still fighting with med supply and now this fight to. All we are asking for is the things our kids need. This is the part of special needs parenting that weighs on me. I am a very non confrontational person and hate fighting with people but for my kids I stretch myself and work hard to do what they need. We will fight this and if they say no we will figure something out, but that letter last night just felt like a gut punch.
Thank you to the people who have brought us meals this week! We really appreciate it!!!!! Also we came home to a couple of really sweet cards in the mail from people who were amazingly kind. Thank you for the kind words. We came home to a few not so fun things in the mail (a notice the girls therapy place was about to send us to collections for their billing error...) so having some nice mail in the mix was amazing a so thoughtful and we are grateful! Also thank you to my dad's friend Matt who mailed Lydia the walking toy we were looking for, the girls love it and her PT is very excited that she has more opportunities to try to work on those skills as our goal is to have her walking by 15mo.
Jilli had PT and OT this week and is continuing to inch closer to her baseline. Her one med is causing behavioral side effects in the evening and is hitting her emotions hard so I think we are going to talk to the doctors about it. She cried yesterday because she feels like she just makes bad choices and no one wants to be around her. While this is not true and I highly doubt anyone has said that to her I think she is not use to struggling with behavior regulation and she is trying to work through things and I don't think she likes how the med is making her feel. We are trying to balance redirecting her but also there are times were there is consequences and she is not very use to that because typically she does not get in trouble very often (its not that we give her a free pass because of her medical needs, typically she makes good choices or can easily be redirected) By bed time right now we are all exhausted.
So today we keep going. We don't let yesterday's frustration keep us down for long. Today I will learn more about appeals. Today I will spend time with my sweet girls. This weekend we don't have a ton of plans which is good. Down time is good and we need to get ready for time at children's next week for a few appointments.
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