Monday, February 22, 2010

Diagnosed with HD

After Mateo was born, I was having a hard time getting him to latch. He wouldn't eat. Then he began to vomit yellowish liquid (bile). The nurses said this was common, that he had swallowed amniotic fluid. Hours later, Mateo had not had a bowel movement. Nurses also said this was normal and gave him a suppository-to no avail. They tried syringe feeding him a sugar water, which caused him to vomit more. I kept insisting that something was wrong with my baby, but I kept hearing "it's normal". Once the pediatrician came in to do his exam (the NEXT day) I told him what was going on. He ordered xrays. Mateo's bowel was so big, they were worried that it might burst. Mateo was taken in the neonatal ambulance to a larger hospital in our area for surgery.

We met with the surgeon, Dr. George Wadie, who told us that he had a few things in mind. He said that it could be as simple as a meconium plug, which is when the first black, tarry stool is too thick to pass and it backs up. It is treated by simply going in and cleaning out the intestine. Another possibility is that he could have a disorder that would require surgery. He would do an exploritory surgery and give us more detail then.

Mateo went in for the procedure, and we were told that it was NOT a meconium plug. They wanted to do a rectal biopsy to check for ganglion cells. So, Mateo goes in for the biopsy, and gets an ileostomy. An Ileostomy is where they cut his small intestine, seal one end, and bring the other to the surface of his belly, so he can pass stool. When the biopsy results came back, it wasn't good news. Mateo lacks ganglion cells in his colon and part of his small intestine. He was diagnosed with Hirschsprungs Disease.

After having the ileostomy, Mateo still was not able to pass stool. He had to go in to have his ileostomy revised, because the lack of ganglion cells was more extensive than first thought. From this point, Mateo had a central line IV for nutrition, an NG tube, tubing down his nose to his belly to remove bile and let his bowel heal. This was eventually used for drip feedings and was replaced with a G-Tube- a mic key button system.

Mateo lived in the NICU from Oct 21 08 until Dec 31 08. He was kept for observation, most kids with such a severe case of HD have problems gaining weight, since they have a hard time absorbing nutrients with such a small section of working bowel.

Mateo was tried on my breast milk, which he couldn't break down, and was tried on several formulas. The one that worked is called Neocate Infant, which he is still using today.

As of today, Mateo is 16 months old. He still has an ileostomy. He also has his mic key button feeding tube, but as done so well with feedings and weight gain, he only has to be connected to it at night. :) He is still on formula, and his diet is trial and error. Dairy, sugars, eggs, and greasy/fatty foods are NO NO's for him. But he is a happy go lucky little man for all he has been through. He continues to thrive and grow!

As for the future and what it holds for Mateo, it is up in the air. We see pediatricians, his surgeon, a gastroenterologist at Doernbecher Children's hospital in Portland, as well as Ostomy specialists. We are at doctors appointments one a month at least.

The last I was told is that Mateo will need a "lengthening procedure" which means that his surgeon will go in, and cut his small intestine-like an accordian. But this has to be done when he's a little bigger, so his intestine will be larger in diameter. From there, we let him heal, then do the "pull through". They want to start this process when he is of potty training age, and is able to pee in the toilet.

So for know, we are playing the waiting game.

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