After attending Jordan World Circus, thanks to the Starlight Children's Foundation, @ the Puyallup Fairgrounds...Summer LOVED the ponies, elephants, and especially the high flying acrobatic Ariel princesses (her favorite...she kept saying "printhess, ahh, ahh, ahh (like Ariel's singing) 3-12-2011

Friday, January 22, 2010

The Legend of the Short Gut Wonder!

Here she is! One day after more NG tube or Broviac (IV)...
You can see a few new teeth coming in.
Beautiful isn't she?

I have decided to rename Summer's blog. This visit to the hospital has confirmed all our beliefs that she truly IS a MIRACLE! And, I have a feeling the docs are going to be talking about her for a long time :)

Yesterday Summer had her surgery...removal of the Broviac and G tube placement. As usual, we talked with the surgeon before hand. He has been very concerned about where to go in to place the G tube. So concerned that he ordered copies of her chart(s) (apparently it is a 9 volume chart!) to review the history of her gut surgeries. He was worried that he could jeapardize her intestines and impeed the progress she has made if he went in at the wrong place. Her stomach is now behind her intestines and he felt like there would be a lot of scar tissue to work around. There was a big possibility that her liver may be inflamed and her intestines could be fused to the abdominal wall. Yikes! So, he explained to us that he may have to make a much larger incision in her belly than originally thought, creating a large "T" scar....cosmetically not a great option. Or, he could start in the old incision and back out if he felt it was too risky, then cut into the belly higher up.

When he got into the OR and Summer was asleep, he was able to examine her better...he discovered her very dialated intestines (a good thing for her...more surface area on them means better absorption) were very close to the surface. In fact, under her incision scar, there are a few layers of skin, but no abdominal wall to protect them. If he would have cut into that, it would have been "ugly", he said. He told us that her liver is in excellent shape, which is unusual in short gut is a nice healthy size, not enlarged like it would be if it were damaged or diseased.

When surgery was over (it only took 2 hours instead of his projected 2.5-3+ hours), he came out to talk to us. He had a big smile on his face....always nice to see from a surgeon! He said we got the best of both worlds. He was able to make a small (about one inch) incision to access the gut, avoiding the intestines almost completely, and place the G tube without any trouble. We were all so relieved it worked out that way! He felt confident that Summer could recover nicely since he didn't have to disturb the intestines...phew!

Summer has been doing fairly well. The first day/night she was in a lot of pain. Her heart rate was fluctuating and even got as high as 200 at a couple of points...normal shoud be about 120. She was also very swollen and red and very sensitive. They gave her Tylenol and Morphine for the pain, but the Morphine made her very jumpy and jittery. She also ran a low grade fever most of the day and so they were concerned she may be developing an infection.

This morning her fever was gone and as the day went on, she didn't need Morphine. The swelling started going down, and she has now pooped 4 times! Yippee...what a fun thing to celebrate ;) For her, it is the best thing ever! The first time she went, she was acting like she was in pain, then had some very loud, loaded gas...then, smiled and laughed! It was so funny...she was definitely telling us she was feeling better. :)

They started her feeds this morning, via her G tube, at 20 ML's per hour and have increased it by 20 ML's every 3 hours. She just got turned up to 100 ML's and will be increased to 105 (what she came in at) very shortly. As long as all continues to go well with her feeds, she will be discharged tomorrow :) That is, of course, after I get my free parent massage, haha!

So, to explain the renaming of her blog...while we have been here, we have heard the same things for the last two days from docs and nurses....

No one thought Summer would make it this far. The entire surgical team is amazed with her progress...the resident that did rounds tonight said when he was talking about her during their briefing, they all did a double take and said "you're kidding me! Summer Cameron? But, she was left with only 10% of her bowel! ...and she is tollerating full feeds? ....and just had a G tube put in??" Our nurses have all been very surprised too. One of them said it is unheard of for a baby like Summer, with only 10% left, to be getting a G tube, tollerating her feeds (most kids like her can only make it to 20-30 ML's per hour, she is at 105!), and be off TPN! Everyone is thrilled to see her....they told me she is definitely the exception to the rule, as all the other short gut kids like her are very sick. Summer's bum is still crystal clear....that is something that is unusual too...most short gut kids have nasty rashes all the time, like she used too. Everyone keeps congratulating me and commending me on a job well done....I say, Good job Summer! Way to prove them all wrong!
So, in lew of the legendary status my little person is obviously gaining, I am giving her the title " The Short Gut Wonder"....defying odds whenever she can :) She deserves applause! And, I have a feeling this little girl is going to be very spoiled....well, she deserves it! :)

The night before surgery...Broviac still in....

Giving mom "5"...the last time we had to flush her line! Sorry Summer, no moe saline flush syringes to play with!

Summer's TPN tray....soon to be we're making COOKIES!

Daddy cuddles after surgery. Whenever Tom and I are both here, she picks him to comfort her....I think he likes it :)

While I was uploading the photos to this post, Summer was watching me...she saw this photo and started chanting "Da, da....da, da"....she usually says it with a whisper...too cute.

Daddy cuddles with his movie player...always in tow :)

Summer starting to open her eyes, but not feeling quite herself yet

Later, after Tom left, Summer stared having moments of happy smiles...she even posed for me with her doctor bunny she got for Christmas

Happy girl

This afternoon she was feeling even better...her shiny disposistion is slowly creeping back...
She even said a few new words today....the nurse asked her to give her "5"...Summer said "Fye" and gave her 5 :) She was crying a little when the nurses came near her and she said "My momma" melted my heart! :)

I think I might have to take more photos than usual now that every day is a "no tape" day!

Some "after" shots...this is the G looks like an inflatable ball plug. this tube is to vent the after surgery gas....

The feeding tube plugged in...her new attachment...but we can hide it now! Goodbye nosey strangers! (I hope)

Summer this evening after a few poops....she is feeling so much better! She loves her "ba ba" (baby doll)

Have a good sleep....for tomorrow we may go home!

1 comment:

  1. Hello,

    I am a nurse at a children's hospital in ausitn, tx, and was wondering if I could use a picture of your daughter in a photo collage. I have created an educational binder for our new nurses, and I wanted the pictures on the cover page to be happy and uplifting. Your daughter is so cute and smiley! I believe the picture was taken before her g-tube was removed. If you would like me to send you an email with the actual picture attached, please email me at

    Thank you,
    Mindy, RN