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April 1st, 2011, 03:34 PM
i3ai3ydanny i3ai3ydanny is offline
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This is just copied from the blog I started a few days ago. This is just today and yesterday.

First the good news.

Danny went into the pediatrician today to have his chart flagged for his immune complications because of the various things that have to happen when he is sick. While we were there the pediatrician looked over the few records he had printed, before the system went down, and just with those few said he wanted to refer him to a hematologist. He wanted to ask another pediatrician that was working this morning because he used to work in the hematology departement at children's. Even that doctor said he needs to be followed by a hematologist and not just the GI. They only had two visits from the GI and didn't even get the records from the actual blood counts. They only had references to them. They said anytime blood counts change either in a cyclic manner or if they are constantly low or high they need to be followed by a hematologist...not another specialist that orders a vial of blood once per month. He is also going to have the referral for Cincinnati Children's put through that office!!! I was so excited that I forgot to ask a few questions. I will be calling back shortly to ask those questions. I am so glad that we are finally seeing a break in all this ridiculous red tape.

Now the not so good news...

We went to feeding therapy yesterday, but they didnt' find anything that would even warrant us coming back. We need to initiate a night time snack...just before bed...so that if he refuses dinner he will have a scheduled snack to give him a chance to eat rather than just being allowed to eat if he feels like it later. This is to discourage any behavioral feeding issues he may be starting. We also have to keep a food diary for three days and send it in to his nutritionist at children's to have her calculate how many calories he is getting now. We will also keep one indefinitely after that until we can 100% rule out the feeding tube. He still isn't really eating much but will have a spurt of eating and then stop for almost an entire day. Lunch he will usually eat more than the other meals (but still not enough). He has refused breakfast since 3/20 and hasn't eaten much at dinner since then as well. Lunches have been slowly getting larger and larger since this past Monday (with the exception of his eating explosion on Tuesday). So basically we still have no idea why he isn't eating... I will keep offering food and recording how much of it he eats. Hopefully we will get out of the g-tube possibility zone soon.



This part is from a few days ago...


I am truly grateful that he is still eating something but Danny has cut back on how much he is eating again. He refused breakfast...again...and only ate about 1/2 of what he normally would for lunch. Yesterday he didn't eat breakfast but at least he ate most of his lunch and a HUGE dinner. Today he refused dinner at all for about 2 hours then he finally ate a tortilla. His reasoning...and I quote, "Mommy, I want a soft shell because I don't want a pipe in my tummy." He has changed the "tube" to a "pipe." I smirked but didn't laugh because he is scared of the "pipe" even though I showed him a friend's picture with her tube. We are still going to the feeding therapist tomorrow from 12:30 until around 2 pm and hopefully it will be a one visit gives the answer type thing. I am willing for either a "this muscle isn't working well and thus he gets tired quickly while eating" or "this is behavioral and he should be back to normal soon." If I get either of those answers I will be happy. At least we would have a reason for the sudden plummet in his food intake. He also has a well check at the pediatrician Friday morning so that we can have his chart "flagged" so that anytime Danny comes in the doctor will see the note. Our pediatrician has electronic records so if it isn't on top, it doesn't get read unless you mention it. Due to the blood count fluctuations, any time Danny comes down with any type of illness he has to get a CBC (complete blood count). If he has a fever over 101 he goes in ASAP to get one and if he is sick for 4+ days with no identified cause he has to have a blood culture and a urine culture to rule out sepsis. Sepsis is where the blood or urine is infected and is extremely dangerous. Due to his immune system not working right even when the blood cell counts are normal he can develop odd conditions quickly and they need to be treated quickly.
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