Saturday, February 28, 2009
No end in sight...
Temp is up to 38.5, vomiting, abdominal pain increased, still yellow as can be-he is dehydrated, so they are going to increase IV fluids. Don't know what else can be done for him right now-things may have to get significantly worse before we can tell what is wrong...Aaron is worried. I hope I can share my peace with him. I know that Isaiah will be fine in the end. We've definitely seen him in worse shape. At least he's breathing on his own this time...
They call me Mellow Yellow...
So, I'm in Omaha to visit this weekend. I don't know if you can see it in the picture, BUT, the first thing I noticed about my boy is that HE IS YELLOW. Yep, even his eyeballs. The term is "jaundice". That just means that the has too much bilirubin and it spills over into the skin, eyes and urine (his pee is orange). It can happen when someone messes with your liver. It gets kind of irritated and then it gets over it. In Isaiah's case, we don't know if it's from that(the surgery) or if his liver is unhappy about something else.
Isaiah is unhappy about not being able to eat food. He tried to eat cheerios and milk yesterday and it clogged his drainage tube. No more cheerios, unless they are pureed. I ordered some sugar free vanilla pudding and some pureed chicken noodle soup for him to eat. It all arrived and he was hurting so badly he didn't want to eat. So, he climbed back in bed.
I asked him where it hurt and showed him where his liver is. (Under the rib cage on the right side) When I touched his skin to show him, he about hit the ceiling-very tender...my poor little guy.
You can also see in our group picture that he is extremely grumpy today. Who wouldn't be, right??? Liver issues also cause food to taste different, usually in a bad way. I guess we'll see what happens, eh?
Friday, February 27, 2009
Somthing is NOT right...
I've never seen a seriously ill child look so cheerful, have you??? That's our boy-always smiling!
He's even doing homework for his beloved hospital teacher, Mrs. Eva.
The tiny portion of Isaiah's remaining intestine has decided to remain asleep. He had testing yesterday where they put the liquid into his stomach that can be seen on a monitor as it goes through. Only a tiny trickle made it through. The rest, unfortunately, came back up. Looks like the drainage tube stays in for good. At least he doesn't have to go back to surgery to have it removed.
Today he is running a fever and not feeling well. Something is wrong, but it just isn't obvious yet what that is...I hope it's not an infection in the blood stream (sepsis) or infection in the abdominal cavity.
I get to go to Omaha to see my boy this weekend!! Our girls are staying at a friends house, so I get to be there at the same time as my dear husband. Nice to see him once in awhile...;)
Wednesday, February 25, 2009
Isaiah pics
After small bowel transplant 3/2007
After transplant with Grandma & my 2 girls! 
Playing at my friend Jen's parents house with one of Isaiah's "babies."
Healthy Days..
Isaiah and best bud!
Isaiah and his transplant surgeon-Dr. Grant.
Some of THE TEAM taking care of Isaiah in the hospital last week.
In a lot of pain after the rejected transplant was removed 2-19-09
After transplant with Grandma & my 2 girls! Playing at my friend Jen's parents house with one of Isaiah's "babies."Healthy Days..Isaiah and best bud!Isaiah and his transplant surgeon-Dr. Grant.Some of THE TEAM taking care of Isaiah in the hospital last week.In a lot of pain after the rejected transplant was removed 2-19-09 Still better (I think)...
Isaiah is in great spirits and still trying to get up and walking around. His gut has not awakened yet and that could be a problem. We'll give it more time...
I am trying to get better at telling people what happened to our boy in surgery and about the need for a second transplant. The statistics just don't look very good, but I'm telling you-this boy is going to be fine. I just know that. But, it doesn't stop me from being sensitive about telling people.
I am missing him so much today. He was very happy on the phone when I spoke with him earlier. He is homesick, but happy to have Dad there with him. Isaiah is usually like the energizer bunny. He has ADHD. He talks, moves and thinks like the wind. He does have the ability to drive me to insanity (he loves it when I say that, it makes him laugh), but it wouldn't be Isaiah if he weren't going 100 miles per hour in every direction. All afterburner, no rudder.
Every day is one day closer to getting him back home where he belongs. I think he will be OK to go back to first grade, but he will not be able to attend day care after school anymore. That's going to put a crimp in the old work schedule...Aaron works evenings and I work days/evenings/whatever. That's the life of a per diem RN. Flexible, but not always predictable. Love my job, though.
So, the problem solving begins. We have a lot of things to figure out, but I am confident that God will show me the way to go. The doors will just open to show me the way.
I am trying to get better at telling people what happened to our boy in surgery and about the need for a second transplant. The statistics just don't look very good, but I'm telling you-this boy is going to be fine. I just know that. But, it doesn't stop me from being sensitive about telling people.
I am missing him so much today. He was very happy on the phone when I spoke with him earlier. He is homesick, but happy to have Dad there with him. Isaiah is usually like the energizer bunny. He has ADHD. He talks, moves and thinks like the wind. He does have the ability to drive me to insanity (he loves it when I say that, it makes him laugh), but it wouldn't be Isaiah if he weren't going 100 miles per hour in every direction. All afterburner, no rudder.
Every day is one day closer to getting him back home where he belongs. I think he will be OK to go back to first grade, but he will not be able to attend day care after school anymore. That's going to put a crimp in the old work schedule...Aaron works evenings and I work days/evenings/whatever. That's the life of a per diem RN. Flexible, but not always predictable. Love my job, though.
So, the problem solving begins. We have a lot of things to figure out, but I am confident that God will show me the way to go. The doors will just open to show me the way.
Tuesday, February 24, 2009
Better today!
My boy sounds like himself today!! He is hurting, but he is trying to walk more frequently and he is in the chair most of the time. His personality is re-emerging and he has turned the corner. He got to see the in hospital school teacher for a short time today. Isaiah adores her and will do any school activity for her, including reading.
His gut has not awakened at this time. Will it??? Time will tell. Isaiah is getting used to having the drainage bag hanging from his abdomen and the central line tubing hanging in the way. Makes it hard to walk and go to the bathroom, change clothes, bathe, etc.
We know that we have a 50% chance of having another surgery between now and the next transplant because something may not heal correctly from this surgery or he rejects the remaining piece of intestine from the transplant. We just kind of hoped that it would be the 50% that WE like. I guess we'll leave that up to God. I started to feel silly for being so upset about Isaiah needing a new transplant. Look what God has ALREADY done for this child. That's nothing compared to what he can do next!!! If that's not God smacking me in the head, I don't know what is.
As I remember, five years after this type of transplant, only 50% of the children Isaiah's age are still alive. After a second transplant, we can only assume the odds are not as generous as 50%. But still, I have a sense of peace, not denial. God is going to show me how to work this out. The solutions will become known somehow.
It's very difficult to live apart from your family for so long after the transplant (typically about six months). I think I was definitely a little crazy when we moved back home after his transplant in August of 2007. But we will make it again, just like before.
His gut has not awakened at this time. Will it??? Time will tell. Isaiah is getting used to having the drainage bag hanging from his abdomen and the central line tubing hanging in the way. Makes it hard to walk and go to the bathroom, change clothes, bathe, etc.
We know that we have a 50% chance of having another surgery between now and the next transplant because something may not heal correctly from this surgery or he rejects the remaining piece of intestine from the transplant. We just kind of hoped that it would be the 50% that WE like. I guess we'll leave that up to God. I started to feel silly for being so upset about Isaiah needing a new transplant. Look what God has ALREADY done for this child. That's nothing compared to what he can do next!!! If that's not God smacking me in the head, I don't know what is.
As I remember, five years after this type of transplant, only 50% of the children Isaiah's age are still alive. After a second transplant, we can only assume the odds are not as generous as 50%. But still, I have a sense of peace, not denial. God is going to show me how to work this out. The solutions will become known somehow.
It's very difficult to live apart from your family for so long after the transplant (typically about six months). I think I was definitely a little crazy when we moved back home after his transplant in August of 2007. But we will make it again, just like before.
As the days roll on...
Monday, Feb. 23
Isaiah is still sitting in the chair. He still has some severe pain, but it is not constant. He even got up with his Grandpa yesterday and waked a few steps. Lots of sleeping and resting. My husband is back in Omaha with Isaiah, so he is happy. Lots of boy time. Isaiah will sit up and watch TV or a movie and will even play a video game for a short time. Very encouraging. I feel like he has definitely turned the corner.
He definitely does not want to discuss transplant with anyone. I have let Child Life know and a psychologist will be following him until he can get home to see someone. They are so wonderful in Omaha. A whole team of trained professionals that know this child and how to help him. Everyone has been encouraged by his spirit and his smiling attitude in the past.
He has been switched to Fentanyl patches, from what my husband says. This means that a narcotic is soaking into his skin, giving more even pain control than an IV drug. I miss my boy so badly.
I have to say that work is very therapeutic. I am able to go and provide care for other people-it is a wonderful way to keep my mind off our family issues. There are so many people that are not half as blessed as I have been. Our family is so lucky, truly.
Isaiah is still sitting in the chair. He still has some severe pain, but it is not constant. He even got up with his Grandpa yesterday and waked a few steps. Lots of sleeping and resting. My husband is back in Omaha with Isaiah, so he is happy. Lots of boy time. Isaiah will sit up and watch TV or a movie and will even play a video game for a short time. Very encouraging. I feel like he has definitely turned the corner.
He definitely does not want to discuss transplant with anyone. I have let Child Life know and a psychologist will be following him until he can get home to see someone. They are so wonderful in Omaha. A whole team of trained professionals that know this child and how to help him. Everyone has been encouraged by his spirit and his smiling attitude in the past.
He has been switched to Fentanyl patches, from what my husband says. This means that a narcotic is soaking into his skin, giving more even pain control than an IV drug. I miss my boy so badly.
I have to say that work is very therapeutic. I am able to go and provide care for other people-it is a wonderful way to keep my mind off our family issues. There are so many people that are not half as blessed as I have been. Our family is so lucky, truly.
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