Gifts: UPDATE

Wednesday, January 5, 2011

UPDATE

- Pedi just called after having talked to hem/onc. Everything is turned around again. They now think it is most likely a GI bleed, can't remember what hem/onc said that made pedi change his mind, was one of his other levels. Don't put the iron in the G, put it in J and get him scoped. GI didn't seem interested in scoping so time to get a new GI. Tomas' llast endoscopy was July '09 and he had duodenal uclers. Pedi said didn't GI follow up, nope, didn't think it was necessary. Pedi and hem/onc want me to go back to the GI we had before an insurance fiasco in Sept. '09. Call tomorrow for appt, and if I can't get one soon then have pedi call him personally. At least this makes more sense than trying to say the J was preventing absorbtion

2 comments:

StephanieJanuary 5, 2011 at 6:05 PM
My head is spinning just trying to understand half of what you write. prayers to you!!
Hugs to Tomas!
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KristinJanuary 5, 2011 at 8:45 PM
Is that even half an answer? Ugh.
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All about Tomas

When I was around 5 months pregnant an ultrasound revealed a birth defect (duodenal atresia - a blockage between the intestines and stomach) in Tomas which also meant he had a high chance of being a Down Syndrome baby. About a month before he was born I had an amnio that showed he did indeed have DS. He was born on January 16, 2009 and had his first surgery when he was 32 hours old. After that, test result after test result rolled in. In the first month my family learned he had three holes in his heart, his liver was not working, and he had Transient Myeloproliferative disorder (a type of leukemia which resolves in the first few months of life). The second month revealed laryngomalacia (a collapsing larynx), primary and secondary aspiration, and severe reflux. He was switched to tube feedings and had his second surgery to correct the reflux that was causing him to suffocate. The TMD resolved when he was 4 months old, his liver started working when he was 5 months old, and the holes in his heart have closed without intervention. After that we found out his left lung is partially collapsed, he has a stomach hernia and a liver hernia and multiple bowel hernias, and was recently diagnosed with neutropenia. He had another 2 surgeries. He is on J-tube feedings, requires oxygen support, needs to be on a pulse oximeter monitor, and has 10 specialists who follow him. He is exactly what I never knew I wanted. He has taken our family and carried all of us to a place where every smile matters, where the days breathe with possibilities, and joy reigns supreme.

Gifts

Wednesday, January 5, 2011

UPDATE

2 comments:

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