Half Crazy All for the Love of You

Ok so today they decided to drop his feedings to an hour and a half. It was at 2 hours. But since this wasn't decided til about 9 this morning and we thought the Dr. with the scope was going to be here at one this didn't start until about 4:30 when he got fed again. They wanted to make sure his belly was empty when they put the scope in. The throat dr. was super nice and the results are good... or bad depending on how you look at it. He didn't find anything wrong... great! Bad news... we still don't know what caused him to have to go back on the ventilator. It's a little frustrating. They want to start bottle and breast feeding him again. I have expressed my concerns and have insisted that we take the feedings slow this time. No need to rush it so we take a huge step back again.

I have stopped eating dairy for the last few days. I have read that dairy through the breast milk can affect babies with acid reflux. Many dr's and nurses have told me that it wont make a difference but I figure it won't hurt... and I found out that I actually like my lattes with soy! I have also made sure that his multi-vitamin has b-12 because certain kids don't get enough of it. I ran across a blog today of a photographer in Austin that I follow. Her child has had breathing problems and has gotten worse lately. It got to the point that it was scary and a few trips to the ER. The dr's didn't have any answers really and just shrugged it off. Well once she posted on her blog about it another woman emailed her with info on magnesium deficiency. Long story short she gave her child magnesium rich foods and found that he was better almost immediately. They have turned to a holistic doctor for more answers. Sooooo I looked to see if his multi-vitamin has magnesium... looked to see if his milk fortifier had it.. yes. Also found that this same child was given an asthma medication which was causing his magnesium levels to drop. Found out that the medication that Ethan is on does just that but in larger doses. Sooooo asked the doctor about it and she said that we could test his magnesium level if it would ease my mind but that would mean taking more blood from my little baby. She said that the blood work they do to check his electrolytes has the amount of phosphorite and they kind of go hand in hand. So if the phosphorite level changed that would give them reason to check the magnesium. She also said in her 20 years of doing this she has never see that before. Well it has been said that none of these doctors have seen a co2 in the blood shoot up to 169 but Ethan's did. So I continue to wonder. Continue to think... is it something they are missing. Or was it just a fluke thing that he had to go back on the ventilator and now he is bigger that it wont happen again. I don't know. It is so hard to sit here and want to start feeding him again and work towards going home but it is also hard to not know if feeding is what caused him issues before.

I went to the book store today to pick up another book to read and I found my quote. "Half crazy all for the love of you." It's part of that song... daisy daisy give me your answer do I'm half crazy all for the love of you. When I saw it I was like "hey that is me." Yeah I may be the crazy lady that asks the nurses all these random questions because of my "internet medical research" but really that is all I have. The doctors don't know. You always hear those stories about how things are misdiagnosed or missed and I just don't want that to happen to Ethan. So what... call me half crazy but I do it because I love our little man and he deserves to be able to eat from the bottle or breast and breath at the same time. I have been thinking of putting a warning sign outside Ethan's room "Beware... crazy mom inside"

Here are some pictures while he was on the ventilator...

And back on the high flow nasal canula!