She is home on suction.

So wow was today a long day. We just got home and so this is going to be short. I am exhausted. They did a CT scan on her and it showed she had dialated bowels. She is obstucted but only a "partial". They put her on suction with an NG tube (tube that goes in her nose down to her stomach) that pulls everything out of her stomach including air. The goal is to try and get her bowels back down. If this doesn't help and she is still in pain or discomfort we will have to do surgery. The doctor is trying to hold off a little longer in order for her intestines to heal. We would hate for them to go in and do surgery and everything still be all stuck together.

So again we wait and see. I will add pictures tomorrow. The good thing is that she was very happy and was in a very good mood today. She acted totally normal. Her poor body if only it was "Normal."

Thanks for your prayers keep them coming. The doctors have faith in the care that I take of Ava because if it was a typical kid she would have been admitted. Thank God he gave me the patience and the ability to learn quickly.

I'm sorry this was short but I am so tired and she ffinally went to sleep so I am heading there right now. Love to you all!

~Terri

Pray

Hey All. We are on our way to Iowa City, Ava isn't getting better in fact worse. She is now in pain so we are hoping that they will do surgery on her soon. I just hate to see her this way. My Mom is coming with me now and I have to call Brian when we find out what the plan is going to be. The discomfort comes in waves. She didn't sleep much last night.

Pray, pray, pray. Thanks again for all your support.

~Terri

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!

~Terri

Projectile vomitting

Well I know I just updated a few hours ago but since then Ava has thrown up three more times. It is dark green and smells like poop. The last two have been 175-200ml's each time. She hasn't even drank that much today so I'm not sure where it is coming from. She does have a doctor's appointment Tuesday but I fear she may be leaning towards a total bowel obstruction and not just a partial that was shown just a few week ago with the swallow study test.

Please say a prayer that she will poop really good for us within the next day or we will probably be heading up shortly for another surgery. I hate the unknown. She acts fine after she throws up but for a while before it will come out I can tell she is in pain. She is leaning again in positions to ease the discomfort.

Thanks again for your prayers. We need them bad. I'm not looking forward to going back to the hospital. I have been feeling very anxious the last few days almost like my body is warning me.

~Terri

2009 A year of total healing!

Hello to you all! I know it has been almost a week since I gave an update on Miss Ava. Life just goes by so quickly.

I took this picture this afternoon, so about 3 hours ago. She is such a good little girl. All SMILES!


She has been having a time with keeping anything down these last few says. She has been throwing up about 6 times a day. I have been doing a lot of online research about bowel obstructions. (I feel I have to constantly be thinking far ahead of the doctors.) The sad part is I feel like we are getting her Congenital Diaphragmatic Hernia diagnosis all over again. I'm constantly scrapping for new information and sifting through the truth and lies about it all. It is so frustrating. Where are all the other cdh kids that this has happened to? How did they do after reherniating? When is this nightmare ever going to end? Will she be able to eat again?

Okay so the start of the week she was throwing up yellow. (This means it was stomach bile, which is a good sign, meaning it wasn't her intestinal bile. That is green.) She did great pooping and things were staying down a little better. Then about two days ago the green throw up came back. I was discouraged. I looked back on her chart and it had been since Wednesday since her last BM. So last night I gave her a suppository. "Houson we have made contact! So there it was a tiny turd. Yea!"

This morning she has already thrown up 4 times. However her "lunch" (four bites of a ravioli) has managed to stay down so far. ("Cross your fingers!") We litrally have to have her puke bucket at the table. She takes a bite and then she squirms, her head turns a funny angle and she grunts a bit. We all try to distract her. I encourage her to take her plate and eat, watching TV. Usually the sight of food makes her make her head turn sideways and then the grunt starts. How helpless can a Mother feel? On the flip side I am thankful for her TPN. She is up to 25 pounds now. Her heighth was 34.5 about a month ago. She is picking up steem. She still babbles and we have a joke. I ask her who I am, she says, "Bob!" I say, "No Mom!" She looks at me with the most precious blue eyes and says, "Bob!" Then we laugh and laugh.

She loves watching Brian and the girls play "Guitar Hero." She has to be right there in front, many times blocking their view. Then she already has mastered the start pad on the "Dance Revolution." It is far too cute. She starts it and then it plays for about 20 seconds and sometimes she steps on the right squares but mostly it says, "Try again." And she does just that!

On a very positve note her stomach is healing rapidly. I mean almost in front of my eyes. I've been doing the dressing change everyday now for the past 4 days. I have to trim the silver Mepilex Ag smaller everytime. It is the coolest thing I have ever seen. Her skin in almost all the way grown over the bottom of her wound. I called the doctor last week and asked if we could remove her stitches at home with Lisa our home health care nurse. He said we could. So on Friday boy did we try but Ava had other plans. She squirmed and cried so we gave up. I'm going to call Josh, Ava's nurse practicianer tomorrow because they are going to have to knock her out to get these 20+ stitches out of her. There is no way around it. They are "supposed" to be disolvable but they sure don't look like that to me. They pull at her skin. They are not infected but she would feel a lot better with them gone. I have been putting hydrol-gel on them to loosen up the skin arounf the stitches to help with removing them. See I'm always thinking. Here is some recent picture of her stomach and also an old one I threw in.

See how the bottom skin is forming over the wound. Isn't that amazing?



This picture was taken January 2008. I thought it might be worth comparing.

The girls and I rang in the New Year's at my parents house with my Sister and her family. It was nice. Brian and Ava stayed snuggled up in our nice warm house! I'm praying 2009 will be a year of total healing!

Here are some pictures of her this last week!

Bath time!


Ava finally meeting my sister Tina's dog "Patches."


We had a few nice days last week so we took full advantage of them. Ava loves to be outside!


Here is my "Rock Star" daughter Mmiss Ava!


I caught, "the look" she is about to get sick. See chicken nugget in hand?


This picture was taken this morning. This is her usual spot until her TPN is done. It is "The Wiggles" all the way!


Thanks for taking the time to love, support, pray and be there for us. We truly appreciate each and every one of you! God Bless and have a healthy new year!

~Terri