Monday, January 5, 2009

Move Along!

So here is the latest. After I posted last night I gave Ava her bath. She was resting on her daddy. As you can see she looks sick.

After her bath I had to change her wound dressing.

I got Ava's TPN (her central line nutrition) started at about 8pm and she pretty quickly started feeling better. (I don't know why I didn't think to start it sooner. Oh probably because I'm not a nurse!) Then she laid at the end of our bed watching, "The Wiggles." That is the ritual for her bedtime, after about an hour later she was fast asleep.

So the plan was that if she woke during the night with discomfort or more puking we were going to pack her up and take her to Iowas City. She slept very well. Her heart rate was low for her, the 125-130. So I tried to get rest as well. Very hard when you are expecting the worst huh? She woke three times during the night for a drink of water and then fell right back into deep sleep. I woke this morning to Emeline handing me the phone saying, "Mom it's Dad!" Well Brian wanted to know how Ava was doing. I told him that she seemed fine~ well fine for now. He proceeded to tell me that his cousin Cyd's house caught fire and that she pasted away last night. I was and still am shocked. She was not that old, in her 40's I think. She has two daughters in college and one just found out she was expecting. My heart is so sad. So I'm feeling thankful this morning. Please pray for our family as this is never easy.

Ava has thrown up three times already today but it is back to small amounts, but still green or orange. A few of you were concerned with the "green bile" I had described last night. See Ava has been throwing up green bile since October 3rd the day she got sick. She HAS a bowel obstruction. WE KNOW THIS FOR SURE. Right now we are waiting for her intestines to "heal" from the first surgery so that they can go back in and do surgery to remove the partial obstruction. I was very concerned last night because at any time we know this can become a "total obstruction," meaning that her bowels could die. This is always a fear but I've lived with this so long that I know the signs when things start going from bad (which she is right now) to worse (a possibility of things to come.) I fear another emergency surgery.

I called the doctor today and they think I made the right call last night not bringing her in. I don't want to further her complications by adding a flu bug or a cold on top of everything else. I am paranoid of hospitals and clinics. "Germs everywhere I tell you!" So they will talk tomorrow about the possibility of doing surgery sooner than waiting more. I just don't see what we are waiting for, really. It has been 3 months. "Let's get the show on the road!"

She is happy today but to show you how fast she changes here are a few pictures. I was just snapping these pics of her playing with her blocks when all of a sudden she became sick. These pictures are seconds apart. This is MY life and hers at this minute!

Then as fast as it comes it goes. I wonder if she is in pain all the time or if it DOES pass as it seems by her level of playfulness. Then her she is again at the blocks seconds later.

This is her about an hour ago drinking out of my cup.

So the doctors advise was to give her two suppositories and see if that makes anything happen. I did it and well it got very little to come out. I believe it is stuck a lot further up than suppositories can help!

MY plan is to ask them to do a CT scan before surgery to see what they find. Then I'm going to insinuate the surgery be soon. I just have a feeling.....and I don't want to push her.

Thanks for keeping her high on your prayer list. I'm just so thankful that we are still at home. I dread going back there but know it is the only way she will get any better!



Fer said...

Many, many prayers.

My Three Sons said...

Sending lots of prayers your way. She does look a lot better today so praise the Lord for that!

Take care


Anonymous said...

Many prayers still coming for Ava. I swear, I don't know how you do it, I would have been at that hospital..PRONTO! But you know Ava. I was just wondering, since she is getting her nutrition with TPN, can you just give her bland food..noodles, broth, something that won't come back up? She looks like she is enjoying the "binky".
Always in our prayers,
Jeanie & Ryan

The Rice Family said...

Wow what a road you are traveling. I will definitly be keeping you in my prayers and if you don't mind would like to add you to our friends list. I just found your blog through Kaden and Angel Ava's mom. My son also was born with CDH. He had 5 repairs before the age of two. The good news is that this is very rare and there have been less than 5 kiddos that this has ever happened to. I have not read your whole blog yet but it seems live your little Ava is quite the little fighter. I am also happy to see her healing so well. I was surprised that the surgeons made a vertical cut. Our surgeon always made a horozontal cut. Needless to say I think Ava sounds amazing and hope she gets to feeling even better yet.

Kaden and Angel Ava's mommy said...

It is so strange how different hospitals work. But all in all they are all doctors and know best, right??? I really hope that things start moving for you guys and Ava can get in and get things fixed. I couldn't imagine being sick all of the time. Poor baby girl. You can only do so much, the doctors need to start doing too. Just keep fighting and insisting in your wonderful mommy fashion : ).

You all continue to be in my thoughts and prayers, especially Miss Ava.