Edited on 11/21/2007 9 AM to add links to the medical terms as well as to remove any sensationalism and/or over-dramatization. – Tom
Long story short so try to stick with me..
Some biopsies were sent off to Phoenix for testing which lead to Katie Lynn being diagnosed with Intestinal Neuronal Dysplasia. IND essentially means her nerves are present in the bowel but some or all do not work and therefore she does not have bowel movements.
Katie Lynn had surgery again today as a result of this diagnosis.
The surgeon reversed the anastomosis he performed last week. He took the end of the ‘working’ portion of her small intestine and performed a jejunostomy (similar to a colostomy). He then took the beginning of the ‘nonworking’ portion and performed another jejunostomy. Additionally, the surgeon said he did see some, albeit a small “some”, peristalsis (movement/contractions) in the ‘nonworking’ portion. The surgeon also said that he did see some “green substance” in the lower ‘nonworking’ portion; this is the same substance that is currently coming out through the tube in her mouth. These two observations give us the hope that her system just needs time to begin working.
The first jejunostomy empties into an external bag. Once Katie Lynn begins receiving food orally, her system will absorb all the nutrients it can; the rest will empty into the bag.
The second jejunostomy will be for eventual secondary feeding with the intent to help stimulate the ‘nonworking’ portion to begin working.
Once the doctors see gas in the bag, the tube down her mouth will be put on gravity (as opposed to suction). Roughly 24 hours after that, the tube should be removed and real feeding can finally begin for the first time in Katie Lynn’s life. Once the doctors are pleased with how she is taking to the feeding, she will be able to come home.
At the same time, she will still be receiving nutrients through TPN. As Katie Lynn feeds through the mouth and improves, she will be weened off of the TPN and her broviac IV removed.
At some point, we will begin feeding through the second jejunostomy to hopefully, as mentioned above, stimulate the ‘nonworking’ portion to fix itself. If this process is a success, we will begin to see stool in her diapers. If and when we see that, they will run more tests to ensure the portion is indeed working. And if/when that happens, the surgeon will be able to remove the two jejunostomies and connect the two ends once again.
This process will be a long one in that it could take four maybe five years; there is no set timeframe for this to take as long as there is progress.
If her lower portion never begins functioning, we are looking at a transplant as our last recourse.
In the time that Katie Lynn has the external bag, she will still be able to lead a “normal” life.. if “normal” can even be defined these days. She will naturally have some limits that she will need to learn and that’s okay! I had limits after my surgery when I was nine and I am living a great life. She has two loving parents, two sets of loving grandparents, two loving aunts, a loving uncle, two loving cousins, and many loving family friends that will all be here to support her in every possible way.
As you can see, we are in this for the long haul. Katie Lynn will require special care and we are ready to face this head on with all of our might. It won’t be easy, but Katie Lynn is our daughter; our world; our everything. There is absolutely nothing we won’t do for her.
Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight.
Proverbs 3:5-6
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
Isaiah 41:10
Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”
Matthew 19:26
