WEDNESDAY, JANUARY 19, 2011
Today we got "the call". Not the call that most people get waiting for transplants. We didn't get call in the middle of the night; but the middle of the day. Dylan is scheduled for his transplant. On February 7th my husband will be saving my son's life.
I know that Noah does not feel this way. He says that any man would do this for their child. I don't think that to be true. I feel blessed that I have chosen this man to be my partner in life. I feel that there are moments in life that define us as human beings. These times truly reflect our inner character, that time for Noah is now. Noah is a hero. He is MY hero. He is saving our child. I brought Dylan into this world and we both have poured our hearts and souls into him, but Noah is keeping our little boy alive.
I really don't know how I feel about all of this. I will have the man of my dreams and my little boy in the OR at the same time. I can't even begin to explain the fear involved with this. My whole world will stand still for that time, but I know Dylan needs this. It will be hard but I know I will get through this. We all will. We are blessed to have a family like we do. They expressed such great support and love. We are also blessed to have such supportive friends. I can not thank everyone enough for what they have done for us. It is overwhelming to see the love that everyone has for our child.
Today we went to Stanford. Noah has to bank his own blood for the surgery. They need two pints, which have to be drawn a week apart. We will go back next week as well. We also had some more labs drawn on Dylan. It is amazing how good he is at it. No tears; such a brave boy. We will meet with the surgeons the week before to iron out all the details so we know exactly what we need to do before.
For the past week and a half Dylan has been fighting a terrible infection. We are not sure what it was exactly but the doctor said it was most likely RSV (Respiratory Syncytial Virus). Any infection like this is terrible for Dylan. Due to his large spleen he has a weakened immune system because all of his white blood cells that would normally fight the infections are trapped in his spleen. We have done endless breathing treatments. He is using Albuterol and an inhaled steroid, Pulmicort. His doctor also placed him on a three day burst of prednisone. He felt that Dylan’s lungs were having a really hard time getting any air in and needed a little extra help. As if all of this was not enough Dylan was also place on a 10 day course of antibiotics. We have to do this with any fever Dylan gets. It has always been our protocol due to his liver disease. In the mean time we are trying to get Dylan healthy again. This infection has done a number on our little man. His cough in still nasty and wet so we are adding mucinex to the medication list to get it all out. The good news is we are fever free and wheeze free now. Dylan will be pulled out of school for the remainder of the year. With everything that has happened and our surgery actually scheduled now there is no reason to risk new infection before then. Bottom line is his health comes WAY before his ABC's. We will start independent study program afterward to keep him up to speed so he will stay on task and keep up with his friends for the next school year.
On a bright side we are going on a trip. There is an organization that grants wishes for children with life threatening illnesses, the Make-a-Wish foundation. We contacted them a few months back to see if we could have Dylan’s wish granted before his transplant. It only took a couple of weeks for them to contact us and to meet with our wish grantors (the make-a-wish volunteers). Dylan told them that it is his wish to see the snow. He told them he wants to make a snowman, eat a snowflake, and have a snowball fight. Dylan has never been to the snow. He has never seen snow. In fact, our family has never been away for any type of vacation. We have always been leery of traveling with Dylan due to the “what ifs”. The thought of traveling even now is hard for me, but I know we will have a great time and we deserve a little mental break from our day to day. We will be going to Tahoe for 5 days and 4 nights. That is all we know for now. Everything is kept secret and a surprise until the wish grantors reveal it to us. We are beyond thrilled. This will create such wonderful lasting memories for all of us.
Please continue to pray for us during this challenging time. We truly appreciate all the journal entries as well. We will keep this site up to date as much as we can. Thanks again for all the support.
Amber
Today we got "the call". Not the call that most people get waiting for transplants. We didn't get call in the middle of the night; but the middle of the day. Dylan is scheduled for his transplant. On February 7th my husband will be saving my son's life.
I know that Noah does not feel this way. He says that any man would do this for their child. I don't think that to be true. I feel blessed that I have chosen this man to be my partner in life. I feel that there are moments in life that define us as human beings. These times truly reflect our inner character, that time for Noah is now. Noah is a hero. He is MY hero. He is saving our child. I brought Dylan into this world and we both have poured our hearts and souls into him, but Noah is keeping our little boy alive.
I really don't know how I feel about all of this. I will have the man of my dreams and my little boy in the OR at the same time. I can't even begin to explain the fear involved with this. My whole world will stand still for that time, but I know Dylan needs this. It will be hard but I know I will get through this. We all will. We are blessed to have a family like we do. They expressed such great support and love. We are also blessed to have such supportive friends. I can not thank everyone enough for what they have done for us. It is overwhelming to see the love that everyone has for our child.
Today we went to Stanford. Noah has to bank his own blood for the surgery. They need two pints, which have to be drawn a week apart. We will go back next week as well. We also had some more labs drawn on Dylan. It is amazing how good he is at it. No tears; such a brave boy. We will meet with the surgeons the week before to iron out all the details so we know exactly what we need to do before.
For the past week and a half Dylan has been fighting a terrible infection. We are not sure what it was exactly but the doctor said it was most likely RSV (Respiratory Syncytial Virus). Any infection like this is terrible for Dylan. Due to his large spleen he has a weakened immune system because all of his white blood cells that would normally fight the infections are trapped in his spleen. We have done endless breathing treatments. He is using Albuterol and an inhaled steroid, Pulmicort. His doctor also placed him on a three day burst of prednisone. He felt that Dylan’s lungs were having a really hard time getting any air in and needed a little extra help. As if all of this was not enough Dylan was also place on a 10 day course of antibiotics. We have to do this with any fever Dylan gets. It has always been our protocol due to his liver disease. In the mean time we are trying to get Dylan healthy again. This infection has done a number on our little man. His cough in still nasty and wet so we are adding mucinex to the medication list to get it all out. The good news is we are fever free and wheeze free now. Dylan will be pulled out of school for the remainder of the year. With everything that has happened and our surgery actually scheduled now there is no reason to risk new infection before then. Bottom line is his health comes WAY before his ABC's. We will start independent study program afterward to keep him up to speed so he will stay on task and keep up with his friends for the next school year.
On a bright side we are going on a trip. There is an organization that grants wishes for children with life threatening illnesses, the Make-a-Wish foundation. We contacted them a few months back to see if we could have Dylan’s wish granted before his transplant. It only took a couple of weeks for them to contact us and to meet with our wish grantors (the make-a-wish volunteers). Dylan told them that it is his wish to see the snow. He told them he wants to make a snowman, eat a snowflake, and have a snowball fight. Dylan has never been to the snow. He has never seen snow. In fact, our family has never been away for any type of vacation. We have always been leery of traveling with Dylan due to the “what ifs”. The thought of traveling even now is hard for me, but I know we will have a great time and we deserve a little mental break from our day to day. We will be going to Tahoe for 5 days and 4 nights. That is all we know for now. Everything is kept secret and a surprise until the wish grantors reveal it to us. We are beyond thrilled. This will create such wonderful lasting memories for all of us.
Please continue to pray for us during this challenging time. We truly appreciate all the journal entries as well. We will keep this site up to date as much as we can. Thanks again for all the support.
Amber
RSS Feed