Thursday, June 04, 2009

What goes down must come...

Up???? Sophie has been vomiting for the last 3 nights...EVERYTHING she has ate for the entire day.

Be forewarned...this post is not going to be pretty.

Sophie has vomited here and there after surgery. In small quantities. To be expected considering everything she was going through.

But once she became awake and alert, she has been wanting to eat. She gets excited when she sees food. She has started eating solid foods on Tuesday. And she has vomited every evening since then. To be graphic...we know it is everything from the day because of the quantity and because you can actually see what is in the vomit.

It is so frustrating. Her IV can't come out until she stops vomiting. We can't come home until her IV comes out. So each day she vomits, it's another day in the hospital. But she is clear to go from a neuro aspect. They do not believe her vomiting relates to anything neurological. So once she stops vomiting, we can be released.

Of course, in the big scheme of things, this is minor. I mean she is NOT HAVING SEIZURES.

Each morning, I wake up optimistic. Another morning without seizures. Sophie's worst cluster was always when she woke up in the morning. They would upset her. I had to be right by her side. They wore her out. I held her and comforted her until she felt better. That is how we USED to start our mornings. That's why I LOVE taking the night shift now. Because that means I get to wake up with her in the morning and see my beautiful girl wake up in peace. It's a wonderful way to start the day. I cannot even express in words what that does for my heart.

But then by the end of the day I am beat. Exhausted. Disappointed that she has vomited again.

To recap the day and to focus on the positive...

Today she had OT and PT. She is doing amazing. Getting stronger everyday. She took a lot of steps during PT with assistance for balance but she was doing a great job bearing weight on her legs. It takes a lot of energy and coordination for her to even take a step. She barely lifts her foot off the ground but she is doing it. It is coming along.

Brandon gave her a shower and she loved every second of it. She got very upset with me when I put the towel around her to take her out.

She loves her stroller and is constantly pointing at the door and saying "doooor". That is something new. Before she always said "doh" but now she has that "r" sound. I am sure if she could say "home" she would because I know that is where she wants to be. She is out of her bed for most of the day.

Brandon and NaNaw took her down to the playroom this afternoon. She had so much fun and did a great job sitting up and playing with toys. She sat for about 15 minutes straight without any assistance.

Later, Brandon and I took her for walk outside and she fell asleep in her stroller. The fresh air was rejuvenating for all of us.

Here are some pictures...





17 comments:

KC's Mama said...

Awe poor Sophie. Hopefully her tummy starts feeling better very soon! I know how hard that is, knowing you could go home, but then you aren't able to. Being in the hospital so draining...you must be beyond exhausted. Physically, mentally, and emotionally. I am praying for the moment to come soon when you guys can go home and truly have some time to digest everything and continue feeling the joy of each day that Sophie has had with NO SEIZURES!!! Hang in there..you all are doing great.

Karen

Anonymous said...

Hey i know you mentioned in a post she was taking Tylenol with codeine...Check that because my daughter did the same thing with the vomiting & that's what is was...I may be wrong but it might not hurt to have that checked! She looks great!!

Anonymous said...

So glad Sophie is doing so well neurologically!!! Now tell them to figure out what is making her so nauseous! I'll bet her system doesn't like some med she is on.
Is she on any new ones besides codeine? I'm sure Miss Sophie would like to be rid of that IV too! Hopefully tomorrow we'll hear her tummy is all better and you can go home! We're still praying for you.
Love,
Jean

starry_failte said...

ditto the previous liquid tylenol with codeine makes me vomit every time

Reagan Leigh said...

Poor thing! I know how miserable it is to throw up...so throwing up every meal must really be horrible! Thank God no more seizures! What a miracle! I am so so so so so happy for you! And despite it all she looks really great! For her to already be clear from neuro...how amazing is that?!?! Continued prayers for you all to get home as soon as possible, but oh so much praise!

Adesta said...

I was thinking the same thing about the tylenol with codeine. That upsets some people's stomach so I'd check on that.

Sophie looks wonderful! She's such a beautiful little girl. So glad that all is going well for her now. Watch out, she's gonna start talking up a storm soon!!!

victoria said...

Oh, sweet, sweet Sophie. We are sending you enormous hugs and hopes that Sophie stops vomiting soon and you will go home soon.

JSmith5780 said...

Another thought, how is her motility? If she can't go to the bathroom, perhaps her intestines can't handle the food and that's why she is throwing up.

She does look fabulous though!

Sophie's Story by Elaine said...

She actually hasn't been on tylenol with codeine since early morning hours on Tuesday. She is barely even on regular tylenol.

I am really hoping today is the day she holds it all in. We have started her on Zantac and she has been on Reglan. We are also going to start some form of Colace today. Between all of that, something has to work.

Anonymous said...

Hopefully that combination works! I can't wait to she her and also hear all the new words she is saying! She is doing amazing!
Love, Erica

blogzilly said...

Take a long look at these photographs everybody. These are some of the three nicest, sweetest, kindest most warm-hearted people you are ever gonna see.

Elaine & Brandon, what a pleasure to meet you both and what an honor to be there to meet Sophie too. You guys amaze me, all of you.

We'll be back at the hospital this afternoon for the appointment with Chugani but not sure if I will get a chance to come up and see you guys and say goodbye. In the event I can't, I'll be in touch, but I did want to say Thank You, from all of us.

Even in the midst of one of the most difficult aspects of YOUR journey, you selflessly took the time to find us and help us through the early parts of ours.

I'll never forget that, and I'll be certain Bennett never does either.

Here's to hoping that you get to take Sophie home VERY soon, and I can't wait to read about all the new and great things she does each and every day.

You will all be in our thoughts. Thanks again...

anita said...

Hi Elaine,
Just know there will be lots of people praying for sophie(no vomitting )so all of you can go home.Can't wait either for the new accomplishments you are going to have to report everyday.
Anita

Anonymous said...

The only other thing we was worried about with the vomiting was maybe a blood clot, Have they did a cat scan since the surgery? You may want to ask for one...that may not even be the case at all but it wouldn't hurt to check for a piece of mind. If it's not neurololgical it must be a medication she is on thats not agreeing with her. Madeleine did the same thing and hers was projectile for several days even in the car on the way home from Michigan but as soon as she stopped the tylenol and got home she was fine. I pray you find out what it is maybe it is taking a while for the tylenol to get out of her sytem completely before she gets better! Just a thought! God Bless!!

Anonymous said...

And one more thing in these pictures...she looks so good!! Her eyes are so bright! That was a big difference in Madeleine when she woke up from surgery her eyes were so wide and bright like I had never seen before!Sophie is going to do great!I so excited for you!
God Bless! Hugs, Wendy

Holli said...

Yay to no more seizures!!!

I was amazed at the photos! The swelling has gone down tremendously! She looks wonderful!

Hope the vomiting subsides...I know how ready you all must be to be home again.

baby trevor's mommy said...

Awwww...I was wondering how the target date to go home was looking. I'm so sorry... No matter how nice the staff is...or the amount of yummy gift baskets...nothing beats being at home! I'll be crossing fingers that Sophie's little tummy settles soon...

(((((((hugs))))))))

...danielle

Colby said...

I am a little behind trying to check in, as my mom has been sick...But WOW...That is ALL I can think of when I see Sophie!!! Wendy is right! Look at her eyes!!! And it looks as if all the swelling is gone!!! Don't know how you kept all of her hair with all she went through, but it looks so full and thick! OK, I will quit gushing and just say I am so, SO thankful!!! Praise the Lord!!!


Cyndi