Tuesday, July 28, 2009

Clarification & Update

Clarification ~ After receiving a few e-mails and phone calls, I felt the need to go back and read what I wrote the other day. Oh my gosh, I was clear as mud!!

I wrote the following: "We are so excited to have Aviana home with us. While overall, all of the hospital staff has taken good care of her... we know we will take the best care of her. I am looking so forward to taking her outside into the sunshine. She loves being outside and I KNOW she will make improvements from simply having the sun on her face. I am so very excited to have her home in all of her familiar sights and smells, in her very own room and on her very own schedule that she knew and loved.

I cannot wait for the moment she is reunited with her partner in crime, Kama. Kama has been waiting an awfully long time to give her a good lick. I know our cat Zoe has missed her too, although she will never admit it!! I am most excited to just have her here with us again."

I did not mean she is home now; they were initially thinking she would maybe come home sometime this week. I am so sorry for the confusion; after I re-read my post....I could not believe I typed it in that manner. Can you believe I even proof read it a few times :o)

Update ~ Aviana's current feeding tube is called an NG tube and used to go down her throat and into her intestine. The reason the tube initially bypassed the stomach was because while in critical condition, they did not want her to throw up, this would cause the pressure in her head to increase. When she arrived at Kaiser, they wanted to take the tube out and put one of their own in. I let them know that it took a number of days to get the tube in the right spot at UCD. They then decided to just leave it be.

Once the ventilator came out, they pulled the feeding tube right along with it. They put a new one in which went through her nose and into her stomach. Once they started the feeds again she did alright. They then took her off of the main pain medication and started to give her drugs to prevent withdrawal. She then started to spit up her feeds and other medications. This has been a problem since Saturday. They thought they were going to be able to pull the NG tube and put in a G-tube, this tube looks like a button and will go on her stomach. All feeds and medications will go through this tube and will hopefully eliminate the problems she is currently having. They thought this tube would go in on Monday or Tuesday, they would train us on all of the equipment and then she would be home after that.

The GI department was so incredibly busy yesterday, they were not even able to come by and talk to us. I talked to them this morning and they want to run more tests on Aviana and start some new medications. She said the drugs which prevent withdrawal can slow down the digestive tract and so she needs to administer another drug to speed it up! She will be watching her over the next week and then on Tuesday of next week, they will put the G-tube in.

I was out getting a pillow case and the nurse who ordered all of our equipment said, "So, I guess you know they decided to send Aviana straight from here to UCD for a brief stay in rehab." I said no, I had not heard anything about that. Apparently, they have decided she would benefit from a brief two week stay. They will work on range of motion and also train me on all of the equipment. She will then come home. So at this point, we are currently looking at another 3 weeks!

As we know, they change things ALL OF THE TIME and Little Mrs. (reformed) Doesn't Like To Go With The Flow is getting better and better at it every day. I expect nothing and then am pleasantly surprised by all of the decisions which flow whichever way the wind blows! I always wanted to be more like this, but know it never would have happened naturally. I had to be forced into this way of thinking. Strangely, it has become the norm for me over the past 3 1/2 weeks. The reason I write 3 1/2 is because prior to that I was NOT ok with it and constantly fighting against it. Not any more :o) You can now call me Little Mrs. Go With The Flow!

Are you guys dizzy from the rollercoaster??

Me too!


  1. I knew what you meant. :) Hopefully you can work with my buddy, Trisha, at UCD. She does inpatient therapy and is awesome. The rest of the team is awesome, too. When you are ready for some visitors, we'd love to come by.

    Emma has another message for you. "Aviana come over and play in treehouse." Kind of funny because we live in a condo, but oh well. :)

  2. First of all, is funny, but I read what you had written the right way, guess I was on the right track listening to your thoughts not just what I read..LOL. But don't feel badly, you are going thru so much, honey!! I am so suprised by how you have managed to write what you do, but I know this is so therapeutic for you also. Just hang in there, I know there is so much to go thru, and you still have a long road, but I also think you can handle it, you are so strong, stronger than you realised. Take care, take each day as it comes, and just hang in there..
    Much love,

  3. Hang in there...still sending you love from Ohio! I checked your blog every day from Europe and still do everyday. Prayers for your whole family :) You WILL make it through this. The one thing I have learned from this blog is Avi is one tough little cookie!


  4. I don't know you, but feel like I do from your blogs. You and your strong little girl have inspired me so much. Thank you for the continued updates, I think of you guys often and pray for you all the time. I'm so glad to see how she's progressing and the photo of you holding your sweet baby girl made me cry. I immediately went to my two year old twins and covered them with kisses and told them how much their mommy loves them. They seemed to think mommy was nuts, lol. :0) And to Sgt Miranda, we're so lucky to have you and heroes like you around us as we go about our daily lives in Roseville. You are truly angels!

  5. Dear Little Mrs. Go With the Flow - You must EMBRACE the flow and BECOME ONE with it! Only then will you truly understand it!! :-) (thats what I say about the photocopier and it seems to work)

    Of course they change things ALL THE TIME! Remember, it's all educated guessing. They want what's best for Avi...just like you! She will be home soon and this will all be a distant memory (or a book).

    BTW, my lung transplant friend came home today! I'm stuck on a hat for a friend's sister who has cancer...after that, I'll do you dragonfly! :-)

    Good things come to those who wait. Your Avi WILL come home soon!


  6. Since you like the movie references, this one came to mind. The struggles in life make us strong...you don't see it at the time, but in hindsight you do. Everything is not as it seems, Grasshopper.


  7. we so totally understand things not coming out right while you are going through all this. I do believe you will have Aviana home soon. We are praying every day still that ALL THINGS work together for good. Still praying for strength for all of you. V's Grama

  8. Thats great that you are getting better at going with the flow it will make things much easier becaue like you said they are changing all the time and you can't do anything about it but just ride along. I read your email right the first time and was just happy that hoepfully soon she will be home and can have some more familiar things around her.

  9. When is the merry go round going to stop LOL? I'm dizzier than dizzy lol. I just talked to Rob last night asking about Aviana and he said something like 3 more weeks and I said nope, I read the blogs and she is supposed to be home. He's like mom are you sure? Yep I read it I'm sure. To funny. Well we are so glad she is doing so well and will be home soon. Wishing you guys all the best.

    Lots of Love
    Becci & Angela