Okay I am sorry, I meant to go back and update but I got lost in time.
Anyway, we got to go home on Tuesday we found out about 4:00 pm. In my packing and giving stuff to Mark to take home I also sent home my van keys. Luckily for me my cousin lives two houses down and she has a key to my house. She was able to get my key an drive it to me in the middle of rush hour traffic. Thank god. If not for her I really don't know.
Trystyn still does not tolerate a full 6 ounces in a one hour period so we went home on a schedule with instruction on how to reduce the time. It is long and tedious but at least she is not gagging. I am so far really impressed with the surgery she ha not choked once since having this done. So I am feeling like the fundoplication is obviously doing it's job and that is awesome. It does seem like she is eating all day though so I will be glad when we can get a whole feed into her over a one hour period. Other than that she is doing great. She is back to her old self and she has even started to just laugh out loud on her own. I find this hilarious.
Now it comes down to having to deal with my insurance because they are apparently billing her feeding tube supplies through our durable medical equipment which runs out when we hit the $5,000 limit and then they are saying that we have to pay for the supplies out of pocket which could run about $2,000 a month. Obviously, we just don't make that kind of money so Mark talked to HR at work and got the name of the lady at the insurance company that I have to call on Monday and hopefully she will get it straightened out so they will cover it. Otherwise I will beg and plead. We are in the talks of setting up a fund for Trystyn and having some sort of fund raiser to help cover the costs. But we still have to figure out the logistics.
For now all is good - well everyone is as healthy as they are gonna be - and that's something at least.
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