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Thursday, June 2, 2011

A Nineteen Month Reprieve Ends... (PART I)

After going an amazing 19 months without a hospitalization, we finally broke our medical reprieve.  On May 30th, Rebekah started vomiting and was switched to Pedialyte to give her stomach a rest. On Memorial Day, she spent the day either sleeping or vomiting. She always tolerates pedialyte, so this was a different experience. I figured she had a virus. But after over 8 hours with no wet diapers, I called the pediatrician and they told us to head to the ER for IV fluids.

We spent 8 hours in the ER until they decided to admit Rebekah to the Peds Floor at Greenville Memorial Children's Hospital.  They started Zofran to stop her vomiting in the hopes we calm her stomach enough to restart at least Pedialyte. But after running standard blood and urine cultures, it was determined that Rebekah had a pretty significant UTI. We still didn't know the strain, so they put her on IV Rocephin, and we figured in a day or two she would be back to normal.  But it didn't go that way...

Because of the concern of the UTI extending to her kidneys, we did an abdominal ultrasound on 5/31.  It showed no major issues of Rebekah's kidneys or liver. By Wed morning, Rebekah's tummy was becoming visibly distended.  Rebekah continued vomiting despite the zofran, and was starting to vomit some bile here and there. All of this was a mystery since her blood work did not show anything significant (outside the UTI), and her white blood count numbers were actually going down. 


Michael kissing Rebekah during the Upper GI Study

An abdominal x-ray was ordered which showed a blockage in the smaller intestine. Because the doctors weren't sure if it was a complete blockage, they ordered an Upper GI Study to look at how things were digesting. To complicate matters, Rebekah had been on IV fluids since Monday evening, on IV Zofran for vomiting, and continued to vomit at least once every 3-4 hours. Her stomach was becoming more and more distended and the amount of bile backing up into the stomach was becoming significant.
Rebekah's distended tummy on Wed 6/1
For a period of about 12 hours, we attempted to administer multiple doses of barium to Rebekah for the upper GI x-ray series showing the progression of the barium through her tract. She kept vomiting the barium along with larger and larger amounts of bile. What little passed beyond the stomach was going no where. She was becoming more agitated and unconsolable. She absolutely did not want to be touched.
Rebekah's tummy on 6/2. The g-tube button was being pushed by so
much pressure that it was sticking out was past the stomach.
After the last xray at 7am Thu morning (6/2), her stomach was so bloated it was hard and her g-tube button was actually pushed up out of her skin. The pediatric surgeons decided that we were getting to a critical point and could not waste time trying different tests. We signed the paperwork, then I brought up a very sensitive issue with the surgeon.
I said, "I am sure you don't need to be told this, but if Rebekah codes during surgery, or there are any major issues, you are to do every thing the can for her."
Well, his response pleasantly surprised me. "When we cross the door into the OR, we do absolutley everything we can for our patient. Even if they had a DNR, it would stop at the door and be ignored."
(Rebekah does NOT have a DNR (Do Not Resuscitate order), but his point was in the event of an emergency, they treat everyone equally. How refreshing!.
Dropping Rebekah off at the OR.
Michael had to be at home for Isaiah's Kindergarten graduation.
It's tough having to 'choose' between your children. :-(
So Rebekah was taken to 'emergency' surgery Thu morning around 9:30 am. We met with the surgeon around 12:30p for a post op consultation before seeing Rebekah. She did great during surgery and they found and fixed the problem!
Rebekah's tummy when we picked her up post-op. Looks so much better!
It will continue to shrink as she recovers from major abdominal surgery.
Rebekah once again becomes a medical anomaly and defies statistics by having a Meckel Diverticulum present in only 2% of the population.  This extra section and about 3 inches of surrounding intestine were removed along with several adhesions. They threw in an appendix removal for free! LOL.  And to make things even more interesting, her Meckel Diverticulum didn't act 'normally' by bleeding, but inflamed the intestines enough to wrap around it causing a major obstruction. We had MAYBE another day before this would most likely have turned into periotinitis and/or necrotized (dead) intestine and become a major life threatening problem.

Sweet Rebekah looking much better after surgery.
Her face is relaxed and her lips actually have color.
Her GI doctor can't wait to see if this totally changes her digestive system issues! This may have been the culprit behind a lot of her early digestive system problems.

I want to end Part I of this story by sharing the story of Rebekah and her brother, Elijah.  Rebekah has been miserable for this past week. She hasn't smiled at Mommy, Daddy, or even her Nurse Becky. She has been very grumpy for the nurses. But when her big brother showed up Wed night, she cracked a grin, touched his face, and even held his hand. 


While that is a 'nice' story, I am telling it because there is a false assumption that trisomy kids are vegetables that are a burden to take care of and who will never know you. This is so far from the truth! Every trisomy 13 & 18 child I've met has a happy demeanor, a loving soul, and most definitely a recognition of their family. They are a special blessing, and sent to teach us about courage, hope, and unconditional love. I thank God so much for entrusting Rebekah to our family. It is where she belongs...

7 comments:

  1. so glad to see she's hanging in there... love you all, hugs and kisses to everyone.. :)

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  2. Oh my gosh, this has been quite an ordeal for you and your family. My heart breaks for little Rebekah...she must have been in a lot of discomfort. I can relate to this story on so many levels and am thinking of your family. The part about choosing between your children is so true...very difficult. I am often the one who stays with Isla when she is sick and I struggle with the guilt of leaving my son. I am praying that Rebekah has a speedy recovery and that the pic line is successful! Lots of love to you Rebekah!!!

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  3. Susan,
    I spoke with Michael this morning at the kindergarten program and wondered about your absence... had NO idea that your family was going through all of this with Rebekah. Please know that we lift up your sweet baby girl and pray for a quick (and uneventful) recovery! - Angie Mosley (Garrett's Mom)

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  4. I just love this sweet little girl! Praying for a speedy recovery! Your family is so amazing and inspiring!

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  5. PRAISE THE LORD! and a big sigh of relief for another one of our babies.
    I absolutely love the last 3 pictures. Rebekah looks so relaxed and beautiful and so wonderful to be with big brother. Thank you, God. Your Glory shines abundantly in these special little one.

    Bless mommy and daddy, too.

    Love, Pam B (Lilly's great aunt)

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  6. I am so glad the doctors were able to help Rebekah. I love the story about her brother. My daughter also has an especially soft spot for her brother and whenever she's recovering from a surgery he is most successful at cheering her up. I hope she recovers quickly so you can get back home.

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  7. Lori Reite (Joey T-13)June 6, 2011 at 8:51 PM

    I'm so glad you caught this in time. We just went through the same thing with Joey and spent April and part of may in the hosp. Joeys DID necrotize and he would have died by the next day. I think alot of his digestive problems before were do to the blockage. What a blessing Rebekah is!

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