So here we go. Got a call today from UICH to schedule Carson's CT & Liver Biopsy. They wanted to do it on the 29th, but mom is headed to Denver on the 30th so we didn't think that was the best idea. They called back and had it scheduled for the 5th. Carson will only need to be sedated once for both procedures. They will do the CT and whisk him across the all for the Liver Biopsy. Should only take about an hour in all, but we will have the stay the night in the hospital to monitor him and make sure there is no internal bleeding from the biopsy. This is step one the process to getting the OK to do the shunt surgery.
Good things that happened this week:
-Grandpa came down for a visit Wednesday night/Thursday morning.
-Kids got to play with Ms Maggie Sunday night while Mom & Dad had a night out with a Friend from Denver.
-Kaylee seems to be on the road to getting healthy. Fever's been gone since Thursday
-Carson said, "Carson" on Thursday for Daddy!
-OT came and gave us some new idea for things to try to get Guy moving forward with eating.
All in all a good week!
"The central struggle of parenthood is to let our hopes for our children outweigh our fears." (Ellen Goodman)
Friday, March 11, 2011
Tuesday, March 8, 2011
The High Chair
While most kids just eat dinner in their highchair we have found many different used for Guy's Chair. Besides eating; we use it for therapy, to contain him when we want to do dishes and now a new use for it tonight...
Then we started to fix that crazy hair!
He wasn't all that excited about it...
Decided to try out cutting Guy's hair tonight. And it worked out alright. Bought some clippers for fifeen bucks so I figure even if I only use them twice I'll save some money! Probably shouldn't have gone quite so short, but now I know that for next time. Brave little guy didn't even get too mad at me. Tried to get Dave to let me do his too, but he woudn't sit still.
Stated out with crazy hair like this...
Then we started to fix that crazy hair!
He wasn't all that excited about it...
But he was VERY excited to be done!
Even from the back...doesn't look too bad :)
Decided to try out cutting Guy's hair tonight. And it worked out alright. Bought some clippers for fifeen bucks so I figure even if I only use them twice I'll save some money! Probably shouldn't have gone quite so short, but now I know that for next time. Brave little guy didn't even get too mad at me. Tried to get Dave to let me do his too, but he woudn't sit still.Here's a picture of our sick little girl. Has had a fever for the past few days, but she's still cute!
Thursday, March 3, 2011
Second trip to the University
So our trip to the University was much more eventful that we expected.
1st Appointment Hematology:
Nothing too exciting at this appointment. They ordered LOTS of tests. They are pretty much rerunning all the clotting test they ran back in Denver because the records they got from TCH were not complete enough for them. We need to rule out that Carson has any clotting disorders that led to his Portal Vent Thrombosis. Should get results in the next two weeks and they are going to set us up an appointment with the Clotting Specialist there to go over what they find.
2nd Appointment Pediatric Surgery:
This is where things got a little more interesting. We were under the assumption that we were meeting with them as a precaution because there was a good chance that at sometime in the future we would need their services. If/When Carson had a bleed they would be the ones to treat it. Little did we know that we were actually meeting with them because there is a procedure they can do to fix what Carson has (PVT). Well not exactly fix it, but they can take a vein from his neck and use it as a shunt to move the blood around the blood clot. It's called a Rix Shunt Procedure. We were always under the assumption that there was a possibility that magically Carson's body would just fix itself and the surgeon said that was not so much true. He said that was thinking about 10 years ago, but with developments in treatment there is no reason to "wait and see" which was the approach that the Denver doctors were taking. He said if this works (75-80% success after 5 years) it will totally fix the problem. Carson's liver will get the blood supply it needs to grow healthy again, his spleen will go back to normal size, his blood counts will go back to normal and this could possibly even help his developmental problems. We could possibly have a normal healthy kid! He could play football when he grows up which wouldn't be possible with his enlarged spleen. We wouldn't have to be scared to take him out in public because his white blood cell count is low and he gets every sickness. There are lots of hoops the jump though before he can have this surgery. He has to be cleared of any clotting disorders, needs to have a CT, Liver biopsy to make sure his liver is actually healthy, has to have some sort of test that makes sure the vein that that hook up to is open and is good working order. If there is any abnormalities besides the blockage of the portal vein this surgery would not be an option.
http://www.childrensmemorial.org/depts/siragusa/transplant-surgery/rex-shunt.aspx
This is a doctor in Chicago explaining what the procedure is and how it's done.
So this is pretty exciting/scary to us. Surgery is never without it's possible complications, but from everything I've been told and read so far the complications are minimal. If it doesn't work we're just exactly where we are now...We wait and see. There are other, more invasive, shunts that would be an option if things went bad and he had uncontrollable bleeds. This will mean two hospitalizations. One for the liver biopsy that'll be just over night and probably 5-7 days for the shunt.
I couldn't be happier that we moved to Iowa at this point. The care we have gotten from the doctors here has far exceeded what we were doing in Denver. This was one of my reservations with moving to a smaller city/area with fewer option for doctors, but God is good all the time. This always happen for a reason and here we are...with a possible solution to at least one of Carson's issues. We still have no idea what his chromosome deletion means and if that's the reason for his delays, but if this works we will know one way or another if it's because of this or that.
So now we wait for some phone calls. Hematology and GI/Ped Surgery with results of the tests they did today and to let us know when they schedule his CT scan and liver biopsy.
1st Appointment Hematology:
Nothing too exciting at this appointment. They ordered LOTS of tests. They are pretty much rerunning all the clotting test they ran back in Denver because the records they got from TCH were not complete enough for them. We need to rule out that Carson has any clotting disorders that led to his Portal Vent Thrombosis. Should get results in the next two weeks and they are going to set us up an appointment with the Clotting Specialist there to go over what they find.
2nd Appointment Pediatric Surgery:
This is where things got a little more interesting. We were under the assumption that we were meeting with them as a precaution because there was a good chance that at sometime in the future we would need their services. If/When Carson had a bleed they would be the ones to treat it. Little did we know that we were actually meeting with them because there is a procedure they can do to fix what Carson has (PVT). Well not exactly fix it, but they can take a vein from his neck and use it as a shunt to move the blood around the blood clot. It's called a Rix Shunt Procedure. We were always under the assumption that there was a possibility that magically Carson's body would just fix itself and the surgeon said that was not so much true. He said that was thinking about 10 years ago, but with developments in treatment there is no reason to "wait and see" which was the approach that the Denver doctors were taking. He said if this works (75-80% success after 5 years) it will totally fix the problem. Carson's liver will get the blood supply it needs to grow healthy again, his spleen will go back to normal size, his blood counts will go back to normal and this could possibly even help his developmental problems. We could possibly have a normal healthy kid! He could play football when he grows up which wouldn't be possible with his enlarged spleen. We wouldn't have to be scared to take him out in public because his white blood cell count is low and he gets every sickness. There are lots of hoops the jump though before he can have this surgery. He has to be cleared of any clotting disorders, needs to have a CT, Liver biopsy to make sure his liver is actually healthy, has to have some sort of test that makes sure the vein that that hook up to is open and is good working order. If there is any abnormalities besides the blockage of the portal vein this surgery would not be an option.
http://www.childrensmemorial.org/depts/siragusa/transplant-surgery/rex-shunt.aspx
This is a doctor in Chicago explaining what the procedure is and how it's done.
So this is pretty exciting/scary to us. Surgery is never without it's possible complications, but from everything I've been told and read so far the complications are minimal. If it doesn't work we're just exactly where we are now...We wait and see. There are other, more invasive, shunts that would be an option if things went bad and he had uncontrollable bleeds. This will mean two hospitalizations. One for the liver biopsy that'll be just over night and probably 5-7 days for the shunt.
I couldn't be happier that we moved to Iowa at this point. The care we have gotten from the doctors here has far exceeded what we were doing in Denver. This was one of my reservations with moving to a smaller city/area with fewer option for doctors, but God is good all the time. This always happen for a reason and here we are...with a possible solution to at least one of Carson's issues. We still have no idea what his chromosome deletion means and if that's the reason for his delays, but if this works we will know one way or another if it's because of this or that.
So now we wait for some phone calls. Hematology and GI/Ped Surgery with results of the tests they did today and to let us know when they schedule his CT scan and liver biopsy.
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