Catch 22
Well, we talked with the gastroenterologist today and I'm afraid we have more questions than answers.
1.) Does Ellie have a gall bladder?
While we were told that the HIDA scan would find this, we were misled. The HIDA is taken up into the liver through the blood, then excreted out of the bile ducts and does not pass through the gall bladder. The good news is that she does have bile ducts.
2.) Does Ellie have biliary atresia?
They would determine this through 1 of 2 ways.
a.) Percutaneous Cholangiogram - This is the LEAST invasive procedure and would give us the information we need, EXCEPT in this procedure they inject dye into the gall bladder and being as Ellie has no known gall bladder, we're stuck.
b.) Open cholangiogram and liver biopsy - This involves surgery and Ellie's little heart may not be able to take the surgery, so we're stuck.
So, the GI Specialist (GI Molly), did the equivalent of dropping back 10 yards and punting.
She suggested:
1) We do another ultrasound to try to find the gall bladder. This will probably be done tomorrow.
2) Start her on actigall, a medication to help protect the liver and possibly lower the bilirubin count. By her own admission however, she didn't think that actigall was going to do much if at all.
3) With the help of Dr. Beechy, that they should give her a continuous drip of milk and Pregestimil® at 2 cc's an hour. This is the same amount of food she's been getting, just continuously. It is given in an effort to help her system digest a bit easier. The pregestimil also absorbs a bit easier to help her gain weight.
4) Ordering a sweat chloride test to be done to rule out cystic fibrosis. Phyllis doesn't think we'll be able to get anything from this. She's usually right.
I remember being overwhelmed by all the information we received about the heart. How it worked and all the problems that could occur. It took us several days to process that information. The liver is just as complicated and just as essential to the body and just as many problems can occur. I'm still swimming.
So, while we process this information, lets look at my cute little girl.
She loves the disco ball.
She loves to hold her ear. Always, when she's asleep she tries to grab for it, most of the time pulling at the feeding tube in her nose.
Teri got her some new socks. They fit the length of her feet, but had to be taped around her skinny little legs so they'd stay on.
What a pose.
Stop!, in the naaaame of love, before you breeeaaaak my heart. Think it owowver, think it owowver.
Now, I need to make sure that everyone is aware. These pictures are very misleading. Ellie sleeps 22 to 23 hours a day. All these pictures (and about 50 more I didn't upload) were taken in the 10 minutes she was awake while I was there. Most of the others are asleep or groggy or possibly blurry or overexposed.
Oh, I almost forgot. Ellie was born at 17 inches. She is now at 19 and one half inches!!!!! Unfortunatly, she's not gained any more weight to justify those 2 and a half inches. Crazy little weed of a girl. ;)
1.) Does Ellie have a gall bladder?
While we were told that the HIDA scan would find this, we were misled. The HIDA is taken up into the liver through the blood, then excreted out of the bile ducts and does not pass through the gall bladder. The good news is that she does have bile ducts.
2.) Does Ellie have biliary atresia?
They would determine this through 1 of 2 ways.
a.) Percutaneous Cholangiogram - This is the LEAST invasive procedure and would give us the information we need, EXCEPT in this procedure they inject dye into the gall bladder and being as Ellie has no known gall bladder, we're stuck.
b.) Open cholangiogram and liver biopsy - This involves surgery and Ellie's little heart may not be able to take the surgery, so we're stuck.
So, the GI Specialist (GI Molly), did the equivalent of dropping back 10 yards and punting.
She suggested:
1) We do another ultrasound to try to find the gall bladder. This will probably be done tomorrow.
2) Start her on actigall, a medication to help protect the liver and possibly lower the bilirubin count. By her own admission however, she didn't think that actigall was going to do much if at all.
3) With the help of Dr. Beechy, that they should give her a continuous drip of milk and Pregestimil® at 2 cc's an hour. This is the same amount of food she's been getting, just continuously. It is given in an effort to help her system digest a bit easier. The pregestimil also absorbs a bit easier to help her gain weight.
4) Ordering a sweat chloride test to be done to rule out cystic fibrosis. Phyllis doesn't think we'll be able to get anything from this. She's usually right.
I remember being overwhelmed by all the information we received about the heart. How it worked and all the problems that could occur. It took us several days to process that information. The liver is just as complicated and just as essential to the body and just as many problems can occur. I'm still swimming.
So, while we process this information, lets look at my cute little girl.
She loves the disco ball.
She loves to hold her ear. Always, when she's asleep she tries to grab for it, most of the time pulling at the feeding tube in her nose.
Teri got her some new socks. They fit the length of her feet, but had to be taped around her skinny little legs so they'd stay on.
What a pose.
Stop!, in the naaaame of love, before you breeeaaaak my heart. Think it owowver, think it owowver.
Now, I need to make sure that everyone is aware. These pictures are very misleading. Ellie sleeps 22 to 23 hours a day. All these pictures (and about 50 more I didn't upload) were taken in the 10 minutes she was awake while I was there. Most of the others are asleep or groggy or possibly blurry or overexposed.
Oh, I almost forgot. Ellie was born at 17 inches. She is now at 19 and one half inches!!!!! Unfortunatly, she's not gained any more weight to justify those 2 and a half inches. Crazy little weed of a girl. ;)
posted by paqogomez | 11:02 PM
1 Comments:
Phyllis gave it to her because it's bright and shiny and fun to look at. You know, it's very boring staying in bed all day with nothing to look at but the heating grill of the warming bed.
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