This post is in reference to Annabel surgery in July. I have struggled to post these pictures but if you are a parent to a special child then these probably won't bother you.
Annabel went into the hospital for an ileostomy on July 17th. Annabel's surgeon felt that if she was to ever have a chance to take in food again she would need to have her colon rerouted. He felt it was her biggest issue she was facing at this time to get off the TPN.He said after making the incision he was just going to look at her surgery (bowel resection) her had done in 2009 to check out adhesions. This is when he found "the growth"! We are so glad he looked around prior to doing the ileostomy. So the first picture is of Annabel's tummy as it looked most everyday for the past year or more. It had become very distended and firm. This was without food at all.
The second picture is of her belly post surgery. Her tummy is so flat! Then the following picture is of "the growth" that had taken up residence for however long. We knew her bowel loops were filled with air and most always dilated. But this we were surprise to see and wondered how it fit into her small little body.
Annabel is eating now in her g-tube. She is on ElaCare. Her total calories she needs are 800 and her fluid intake is 1180/1200 per 24 hours. Annabel really has never tolerated overnight feeds so at this point she gets very little late at night. She does have minimum gagging/retching which is so much better than before. Her surgeon says she may eventually need the ileostomy but for now we are enjoying being hooked up to as little as possible. We eventually hope to get down to four bolus feeds daily but this won't happen for a will according to GI.
We did see GI this past Thursday and they were very pleased with her progress. She will still experience motility issues but they don't seem as severe with taking "the problem" out.We see day by day Annabel recovering and see hints of her normal from over 2 years ago.
Right now Annabel's life seems easy. I don't ever want to forget the last two years and I really never want to revisit this stressful time.
A central line has changed our world. First we had to enlist the help of 3 great nurse (very thankful for their help through a scary time). The stress from just each and every time Annabel had a fever of 100.5 and over. I referred to the central line as a time bomb. One minute you could relax and make plans and in the next instant you were being transferred to a hospital. Any infection in your line (blood infections) can be life threatening. Some of the antibiotic that she had to be on had terrible side effects. The hit your liver suffers with all these infections and just the TPN/Lipids is bad enough. Even though some saw Annabel's smiles when they said Hi to her we saw a very tired Annabel. She just didn't recover like her old self. Each time she became weaker and we saw through her therapies she couldn't do what she had worked so hard to accomplish prior to her central line/TPN lifestyle. Yes it helped her survive for the last couple years but it brought her closer than ever to not surviving.
Prayers were heard each and every time. I wish I could thank each one of you personally but through all the stress I have become lax in my duties to respond to each comment or even posting on the blog.
Hoping that I will posting more pictures of her sweet life. I love showing her off of what she can really do through pictures not my jumbled words.
Someone asked about ultrasound if it didn't show up. Annabel has had so many KUB's, abdominal ultrasounds, and several CT scans but do to so much air almost nothing could be seen. She was constantly diagnosed with obstructions...just wanted to add this.
You can see in the picture to the right the doctors hand holding the growth and the small bowel that was removed!
