You know God is on your side when he sends you for a random checkup, the doctor calls the hour before and tells you he wants a blood draw, and your kiddo ends up having elevated lipase levels, that would have never been caught any other way and could have been terminal.
When they checked Zoie's lipase (pancreas) levels on Wed morning, they were at a 6,000. Ours would all be at a 100-200. When she had pancreatitis in Aug, her's were at 4,000. Obviously her panrease was ticked off....or at least those were the doctors words.
I always feel horrible when I start bawling at the doctors office because I am always so tough. I usually at least hold back the tears until I am in the car. All Zoie's GI doc kept telling me was that he was so so sorry. And then there was me, who kept bawling :)
Everything always turns out okay, and I should probably carry around a note or something that says, "head up, chin high, Zoie will once again get through this."
Zoie got surgery yesterday on her feeding tube. She had what was called a G tube. She got it replaced with a G-J tube. This meant a bigger whole, and a long tube that would bypass her stomach and go all the way into her intestines so that her pancreas has a chance of surviving.
She did SO good for the surgery! I continue to be amazed at her! She got no anethesia, just a few doses of Versed which is a calming med. Remarkable! It was pretty cute when we walked into the surgery room when they were all done, and she knew right away that Derik and I were there....she had that look of, "mommy and daddy, don't leave me again!"
Since they found nothing abnormal in her ultrasound, they are assuming her pancreas was elevated because of her RSV, and immunity being down. More push for us to keep her healthy. Our goal now is to do a continuous night feed with formula for 10 hours overnight through her J tube so her pancreas can rest, and then she can have her three meals a day with mommy and daddy by mouth. There is really nothing else we can do to rest her pancrease because she has to keep eating and put weight back on. Please say huge prayers that the J tube stays in place, and that her lipase levels drop a TON with the way we decided to do things.
We are home now :) This was probably one of the quickest, but toughest trips to the hospital. I say tough, because it was so unexpected. I am a planner. But, I am also so thankful they caught it. Its also never easy to leave your kiddo with strangers for surgery either.
We were also thrown a curve ball this stay. After talking with several doctors, they explanied to us that even though Zoie has a mild form of CF, if her pancreas levels keep elevating like they are, (yes it's part of cf) then she may no longer have a functioning pancreas. This would mean diabetic and insulin shots....eventually surgery to remove her pancreas, and a shorter life. I know doctors have to tell us this stuff, and I am actually glad they do because I like bluntness and people being straight forward. It wasnt easy to hear, and no I am not saying they are right, but it's something we now need to keep in the back of our head.
After talking with Derik, we decided this was God's way of putting a bug in our ear. "Hey guys. Dont just pray for Zoies seizures and development. Her CF is important too" I do realie I need to pray more for her CF and this was just fuel to make sure I get that 5,000 dollars raised this year for the Great Strides walk.
I know after a lot of prayingand some time, I will feel more peace about this. It just takes time. When it comes to it, it's really out of our hands. God knows what His plan is and we will trust Him as hard aas that is sometimes.
Please continue to pray for us threee, and hoefully we have a blessed Spring and Summer ahead.
Thanks to EVERYONE who does pray for us....I know we wouldn't and couldn't do it without all of you!
When they checked Zoie's lipase (pancreas) levels on Wed morning, they were at a 6,000. Ours would all be at a 100-200. When she had pancreatitis in Aug, her's were at 4,000. Obviously her panrease was ticked off....or at least those were the doctors words.
I always feel horrible when I start bawling at the doctors office because I am always so tough. I usually at least hold back the tears until I am in the car. All Zoie's GI doc kept telling me was that he was so so sorry. And then there was me, who kept bawling :)
Everything always turns out okay, and I should probably carry around a note or something that says, "head up, chin high, Zoie will once again get through this."
Zoie got surgery yesterday on her feeding tube. She had what was called a G tube. She got it replaced with a G-J tube. This meant a bigger whole, and a long tube that would bypass her stomach and go all the way into her intestines so that her pancreas has a chance of surviving.
She did SO good for the surgery! I continue to be amazed at her! She got no anethesia, just a few doses of Versed which is a calming med. Remarkable! It was pretty cute when we walked into the surgery room when they were all done, and she knew right away that Derik and I were there....she had that look of, "mommy and daddy, don't leave me again!"
Since they found nothing abnormal in her ultrasound, they are assuming her pancreas was elevated because of her RSV, and immunity being down. More push for us to keep her healthy. Our goal now is to do a continuous night feed with formula for 10 hours overnight through her J tube so her pancreas can rest, and then she can have her three meals a day with mommy and daddy by mouth. There is really nothing else we can do to rest her pancrease because she has to keep eating and put weight back on. Please say huge prayers that the J tube stays in place, and that her lipase levels drop a TON with the way we decided to do things.
We are home now :) This was probably one of the quickest, but toughest trips to the hospital. I say tough, because it was so unexpected. I am a planner. But, I am also so thankful they caught it. Its also never easy to leave your kiddo with strangers for surgery either.
We were also thrown a curve ball this stay. After talking with several doctors, they explanied to us that even though Zoie has a mild form of CF, if her pancreas levels keep elevating like they are, (yes it's part of cf) then she may no longer have a functioning pancreas. This would mean diabetic and insulin shots....eventually surgery to remove her pancreas, and a shorter life. I know doctors have to tell us this stuff, and I am actually glad they do because I like bluntness and people being straight forward. It wasnt easy to hear, and no I am not saying they are right, but it's something we now need to keep in the back of our head.
After talking with Derik, we decided this was God's way of putting a bug in our ear. "Hey guys. Dont just pray for Zoies seizures and development. Her CF is important too" I do realie I need to pray more for her CF and this was just fuel to make sure I get that 5,000 dollars raised this year for the Great Strides walk.
I know after a lot of prayingand some time, I will feel more peace about this. It just takes time. When it comes to it, it's really out of our hands. God knows what His plan is and we will trust Him as hard aas that is sometimes.
Please continue to pray for us threee, and hoefully we have a blessed Spring and Summer ahead.
Thanks to EVERYONE who does pray for us....I know we wouldn't and couldn't do it without all of you!
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