Well after my last post in July Annabel continued to have GI bleed out of her ostomy until November, 2015. Her intestines continue to deteriorate and as recommended Annabel was placed on hospice. In Nov/Dec I decided to network locally to see about receiving breastmilk from local donors. We were overwhelmed with donations from the sweetest moms.
The bleeding stopped but Annabel continued experiencing the pain that had plagued her most of the year. She was life flighted to Texas Childrens in December the sickest she had ever been. She was placed in surgery for a very severe obstruction. They rebuilt her ostomy and placed in recovery. I truly believe Dr. M was an angel sent to us. Her surgeon since she was a baby had decided without her stomach working that he would not longer operate on her. I will be forever grateful for Dr. M.
We had her central line removed in March and Annabel was tolerating her milk via g-button and was actually receiving some pureed food in her mouth. We were beginning to struggle to keep her electrolytes up just on breastmilk and began giving 1/2 elecare and 1/2 breastmilk. Today Annabel is doing the best she has in the last 5 years eating.
With all of the progress though her seizures became harded to manage. She is on two meds every day with rescue meds used fairly often. Each time we up one of her meds she has about 2 week to 1 month almost seizure free. But then they start again. Last week, while Annabel was at school with her nurse she stopped breathing, non responsive and 911 was called. I met them at the hospital and it was decided that Annabel had a seizure. This is the 5 episode of Annabel not breathing in the last year. My prayer is that these seizure will respond to medication or we will be able to anticipate when they will be coming on so we can help her sooner.
This is a very brief update and so sorry for the errors. Each time I pass my computer I think about updating but trying to put episode in order overwhelms me.