Tuesday, July 19, 2011

Going home and stressed out!!

Hey Everyone,
I know I haven't posted in forever, things have been crazy recently.
We were told she would be discharged last week and had to rush to find a 2 bedroom apartment. Luckily we saw one we really liked last saturday and started all the paperwork on Tuesday (the 12th), we got approved and signed the lease on Friday (the 15th), and basically moved our entire apartment over the weekend and finished tonight, with a little help from our friends.

Leah had her surgery done last Thursday (the 14th) where they did 3 procedures laparoscopically, meaning they made 3 small incisions on her belly instead of a huge vertical cut. The operation was a success. The gave her a G-tube, a fundoplication for acid reflux, and another procedure, which I can't remember the name, that opens the end of her stomach to she can have faster gastric emptying.
She also got her glasses last Wednesday and has been using them everyday. It looks like she can see her toys and our faces pretty well with them, although it's hard for her to keep them on, since she moves a lot. We have to make sure we check that they aren't skewed on her face so she doesn't get dizzy. Hopefully she'll get her contact lenses soon and those will be easier to deal with for her.

So, they are looking at discharging us tomorrow (or shall I say later today, since it's 2 am). We are really not prepared, since we moved everything into the new place today and basically only have her crib (which is still not assembled) and her dresser for her clothes. We need to buy more furniture for all her machines, since she will have an oxygen machine, a suction machine and the cool mist for her trach. All of which need some sort of table or desk or hard surface. We will probably have to take a trip to Ikea tomorrow and get something for her room, as well as assemble everything and get it ready for her.

As if that wasn't enough to have to deal with in a day, while I was driving home today from the hospital to move more stuff, our car started making a really scary rattling sound and we will have to take it to the mechanic tomorrow. Can you believe that this had to happen the day before discharge?!?! I'm so stressed, I don't know what to do with myself. We want to talk to the doctors tomorrow morning to see if they can discharge her either tomorrow evening or Wednesday morning. We will probably have to rent a van in the meantime, so that we can still work on everything, so that's just one more expense.

I know it'll be great to be home and out of the hospital, but I feel like everything is moving so fast, and like they are rushing us out at the worst possible time. We didn't even know that we would even need a larger apartment until they told us that she was going to be discharged soon. We had no idea she would need so many machines and supplies. We really didn't know what or when to expect her discharge, but I think a little bit of a heads up would have been nice.

On the other hand, she has been doing much better lately, she slept really well last night and tonight, so hopefully she will continue this way for a while. She is also at her goal feeds of 1 oz. of breastmilk + fortifier per hour. This is great, since it means the G-tube is working properly and she is tolerating it well.

We also have started receiving a ton of mail and packages from people all over the world. She's gotten several beautifully written letters, a couple stuffed bears (one a princess and one a darth vader bear, lol), a really nice Faberge egg necklace with a little angel on the inside from a lovely family in Singapore, some children's books; and more. We even got a great letter and beautiful drawing from Katie Goldman, the little Star Wars fan girl that was teased about her SW water bottle at school recently. It really has been overwhelming the amount of support we've been receiving. I know I mention it in almost every post, but it's become something that we really feel helps us, and we look forward to it.

I am so exhausted right and don't have the energy to post all the pictures I'd like you all to see, so I promise I will try to post them this week, maybe after we are settled at home. Plus my phone is dying so I can't even access them right now anyway.

Well, wish us luck tomorrow with all the craziness that I'm sure will ensue. I have some more detailed stories about some other incidents that have happened at the hospital, which I will rant about later.

Have a good night!
Peace,
Frani

4 comments:

  1. Take a deep breath or two... Been in your shoes & have walked the path that you all are now on. Having a sick love one, hospital issues, financial struggles, lack of sleep & many "WHY'S THIS HAPPENING?" moments. Do you have a case worker from the hospital? They can usually help if you need more time to prepare for home care. Please accept help & ask for help when needed. Wish we were close by. I would be there with all the concerned families here in Waxhaw & we would lend a hand. I think about you all every morning & will continue to pray. Rest some Moma FranI & Daddy too...

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  2. Stay strong, Frani! I know you get a lot of advice here but in the next few days just remember this: delegate, delegate, delegate!! I know you have family and friends there that want to help so give each person a job and it will all get done like magic! And stay on top of those hospital people! You and Zev are Leah's most powerful advocates and protectors. Take whatever help the hospital offers and if they don't offer, ask! I know you all will be so happy to be home soon, especially Leah. =) May the Force be with you all! =D

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  3. So happy to hear she's doing better! Best of luck with the move - I'll be thinking of you. I look forward to your rants :)

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  4. Sounds like a hectic couple of days. At least Leah is doing better, right? I hope she gets better soon. I think she's lucky to have great parents like you two ^_^. Hope all will go well with the new apartment =)

    ~Marissa S. CA

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