Jordy and I are home for the holidays!!
This was the first time that Jordy had doxorubicin by itself. In the past he had it in combination with Cisplatan. We now know how bad the Cisplatan is. The Doxorubicin by itself is easy stuff! Jordy had no nausea. He also feels much better since he received two units of blood. Jordy is normally pale, but this past week he was even paler. He almost glowed in the dark. Now he is a nicer shade of pale. Jordy’s energy level is also up a little.
This morning the doctors told us that the charge nurse had asked if they could up the rate of the chemo so that we could get home before dark. They though that was a great idea. It only made a difference of an hour, but I think it made everyone feel better. Just before we left Dr. Malempati came in just to visit. Jordy told him about his trip to Shriner’s and getting ready for his prosthesis. As Dr. Malempati left, he said, “It will be nice to see you walk in here”. At that moment it became a little more real. . . Jordy is getting close to having his mobility back. It will be a lot of work, and it will be slow, but it will happen. Wow!
On a side note (and purely selfish on my part). . .Doernbecher’s has new filtering software. It now keeps me from accessing such evil sites as knittingpatterncentral.com (alcohol?) and the Statesman Journal (racism). I just don’t get the connection between knitting and alcohol! Another benefit of being home is that I can look up knitting patterns all I want.
It is really good to be home!
Annie
Saturday, December 20, 2008
Jory's leg looks great!
12/17
Today has been quite busy for Jordy. This morning he had an appointment at Shriner's. Dr. Krajbich said that Jordy's leg looks great! The outside is all healed up. He said that it is time to up the physical therapy and start working on a prosthesis. Jordy's eyes lit up at the thought of beginning the prosthesis process. The physical therapist started him with exercises to bear weight, strengthen his leg and hip, and increase the mobility in his ankle. After the PT session, it was off to O & P (this is where they make the prosthesis).
Jordy was given a lovely "garment" to wear. It was like two pairs of long johns made out of cast lining. It is difficult to put on the two layers and get them pulled all the way up! After they are on, a hole was cut in the top portion and stretched over his shoulder. Picture a wrestling singlet made of nude colored cotton. It is really quite attractive. . .
Jordy declined to attach the photos of this process. Next a cast was put on from the top of his thigh to the end of his foot. After it set, it was cut off. They will use the cast to mold the "socket" that his foot will go into. The first one will be clear so that they can see any pressure points. He should get to try out the socket in the next couple of weeks (depending on holiday schedule and such). During the next couple of weeks they will make a temporary prosthesis that they can easily adjust. He will be able to take the temporary home with him. It is so exciting to be starting this process.
The last thing was to measure for his new foot (how many people get to have three feet?). . . and just so you know he will have two right feet not to be confused with having two left feet! This sort of thing is right up his Papa's line of humor. The measurement was so funny because the prosthesist is not used to working with men over six feet tall with big feet. She is adjusting well.
After checking in to Doernbecher, Jordy had visitors. . . Mr. & Mrs. Santa Claus!! Sometimes it is good to be in a children's hospital. After a great conversation, Jordy was given a basketball and an iPod Nano. He was pleased to get presents that are age appropriate.
Jordy has started his chemo and blood transfusion. It is rare that people make it this far with chemo and haven't had blood. This should help him feel better. We should be home Friday night or Saturday morning. We should beat the next storm.
Enjoy the snow or rain or whatever!
Annie
Today has been quite busy for Jordy. This morning he had an appointment at Shriner's. Dr. Krajbich said that Jordy's leg looks great! The outside is all healed up. He said that it is time to up the physical therapy and start working on a prosthesis. Jordy's eyes lit up at the thought of beginning the prosthesis process. The physical therapist started him with exercises to bear weight, strengthen his leg and hip, and increase the mobility in his ankle. After the PT session, it was off to O & P (this is where they make the prosthesis).
Jordy was given a lovely "garment" to wear. It was like two pairs of long johns made out of cast lining. It is difficult to put on the two layers and get them pulled all the way up! After they are on, a hole was cut in the top portion and stretched over his shoulder. Picture a wrestling singlet made of nude colored cotton. It is really quite attractive. . .
Jordy declined to attach the photos of this process. Next a cast was put on from the top of his thigh to the end of his foot. After it set, it was cut off. They will use the cast to mold the "socket" that his foot will go into. The first one will be clear so that they can see any pressure points. He should get to try out the socket in the next couple of weeks (depending on holiday schedule and such). During the next couple of weeks they will make a temporary prosthesis that they can easily adjust. He will be able to take the temporary home with him. It is so exciting to be starting this process.
The last thing was to measure for his new foot (how many people get to have three feet?). . . and just so you know he will have two right feet not to be confused with having two left feet! This sort of thing is right up his Papa's line of humor. The measurement was so funny because the prosthesist is not used to working with men over six feet tall with big feet. She is adjusting well.
After checking in to Doernbecher, Jordy had visitors. . . Mr. & Mrs. Santa Claus!! Sometimes it is good to be in a children's hospital. After a great conversation, Jordy was given a basketball and an iPod Nano. He was pleased to get presents that are age appropriate.
Jordy has started his chemo and blood transfusion. It is rare that people make it this far with chemo and haven't had blood. This should help him feel better. We should be home Friday night or Saturday morning. We should beat the next storm.
Enjoy the snow or rain or whatever!
Annie
Friday, December 5, 2008
Jordy's back at Doernbecher's ~
12/4
Jordy has finished his chemo infusion. Now we just wait for it to clear out of his body. He is a bit nauseaus, but the meds are taking care of most of it.The GI doctor visited Jordy today. She decided to do an endoscopy tomorrow. An endoscopy is when a small camera is sent down his throat into his stomach. Contrary to the name, it has nothing to do with the bottom end! It is a simple procedure that both Kevin and Kyle have had.This should let us know why Jordy is having such a hard time eating.Jordy and I had an interesting conversation this morning.
He was telling me that when he dreams, he usually has both of his legs. Only once he had a prosthesis.
We were wondering if there is a connection between the nerves that the were able to save and the dreams with his whole leg. We will have to ask. Another interesting thing is that if he is not looking at his foot and someone touches it, he feels it on the opposite side. If he is looking at his foot he feels it on the correct side.
One problem is that if he hits his foot on something and is not looking at it, he moves his leg the wrong way. I wonder if his brain will retrain in time.Most kids that have the rotationplasty are younger and less articulate than Jordy. It is very interesting. Today the doctors asked if Jordy would do some teaching about the rotationplasty. Jordy has learned a great deal, but we are all learning from him.
12/3
Jordy's break is officially over and we are back at Doernbecher's. Jordy passed his blood tests today and has started his chemo. He is stil having problems eating and drinking because of a sore spot in his esophougus.
The dietitician is getting in contact wiith a gastrologist. They would like to figure out this problem.
Jordy is a bit frustrated with the eating thing, because other than that he is feeling pretty good. During the last part of his break he went to the Central Linn-Kennedy basketball game and "played" football with some friends. Now it is back to the real world!
The hospital has a new database system. It is designed to save time and paper. The admission questions are halarious and very detailed. The questions can be very invasive and include things such as how many pairs of underwear did you bring? The really nice feature is a calculator that you can cick on if you lose count. Jordy and the nurse had a great time with comments on the data. For example, one question asked how your pain started. Jordy answered, "Well, when they cut ff my leg and reaatached it, it began to hurt". Jordy and the nurse laughed, and she entered that comment on the computer. Jordy's humor comes out in the strangest ways.
I think that is why he gets along with George so well!!
Jordy has finished his chemo infusion. Now we just wait for it to clear out of his body. He is a bit nauseaus, but the meds are taking care of most of it.The GI doctor visited Jordy today. She decided to do an endoscopy tomorrow. An endoscopy is when a small camera is sent down his throat into his stomach. Contrary to the name, it has nothing to do with the bottom end! It is a simple procedure that both Kevin and Kyle have had.This should let us know why Jordy is having such a hard time eating.Jordy and I had an interesting conversation this morning.
He was telling me that when he dreams, he usually has both of his legs. Only once he had a prosthesis.
We were wondering if there is a connection between the nerves that the were able to save and the dreams with his whole leg. We will have to ask. Another interesting thing is that if he is not looking at his foot and someone touches it, he feels it on the opposite side. If he is looking at his foot he feels it on the correct side.
One problem is that if he hits his foot on something and is not looking at it, he moves his leg the wrong way. I wonder if his brain will retrain in time.Most kids that have the rotationplasty are younger and less articulate than Jordy. It is very interesting. Today the doctors asked if Jordy would do some teaching about the rotationplasty. Jordy has learned a great deal, but we are all learning from him.
12/3
Jordy's break is officially over and we are back at Doernbecher's. Jordy passed his blood tests today and has started his chemo. He is stil having problems eating and drinking because of a sore spot in his esophougus.
The dietitician is getting in contact wiith a gastrologist. They would like to figure out this problem.
Jordy is a bit frustrated with the eating thing, because other than that he is feeling pretty good. During the last part of his break he went to the Central Linn-Kennedy basketball game and "played" football with some friends. Now it is back to the real world!
The hospital has a new database system. It is designed to save time and paper. The admission questions are halarious and very detailed. The questions can be very invasive and include things such as how many pairs of underwear did you bring? The really nice feature is a calculator that you can cick on if you lose count. Jordy and the nurse had a great time with comments on the data. For example, one question asked how your pain started. Jordy answered, "Well, when they cut ff my leg and reaatached it, it began to hurt". Jordy and the nurse laughed, and she entered that comment on the computer. Jordy's humor comes out in the strangest ways.
I think that is why he gets along with George so well!!
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