Oh yeah,
The full results for the lumbar puncture and bone marrow asperation will come tomorrow but they did let us know that initially it is looking better than the first.
Sunday, August 30, 2009
Sunday Evening
Yesterday Ben had another Platelet transfusion so he could have another lumbar puncture (spinal tap) where they would also inject his spinal fluid with another Chemo treatment & also so he could have another bone marrow asperation so they can assess how the Chemo is working. The Chemo made him tired and quiet again, he didn't really talk much and stayed in bed most of the day.
Today they tested all the levels in his blood and although his platets were in good numbers his red blood count was down very low again so they gave him a red blood transfusion this morning. He napped for several hours today and when he woke up he was rested and the transfusion was finished so he felt much better. We walked around our floor because he is not aloud of our floor without a mask and he didn't want to wear a mask. Honestly though I am glad he doesn't because I don't really want him wandering the hospital anyway :). They had to start giving him a stool softner because one of the Chemo drugs call Vinchristine really makes it hard for him to go. We are praying that we will be able to counteract this once we get home with a really good diet so that he will not have to be on stool softners all the time.
Olivia went to Uncle Tim and Aunt Carol's yesterday. Ben (denny) slept at the hospital with little Ben last night so Matt and I could spend the evening together with Olivia. I think it really helped her to have a night with us. Valerie picked her up this morning with Baby Jack and took her to church with her and then home with her for the night. I stayed with Ben today and Matt slept now I am going to rest tonight and Matt will stay the night with Ben tonight.
We are praying that we get to go home tomorrow. It all depends on insurance so pray for us. I think Ben will do much better when we get him home. He has told us several times now that he thinks he is in trouble and that is why he is not aloud to go home with Mama, Daddy and Sissy. It makes me sad that he doesn't understand but I am praying that God keeps him comforted when I cannot.
Matt and I wanted to thank everybody. It is so hard to even keep up with all the people praying, babysitting, bringing food, visiting Ben, do laundry, cleaning our house....just to name a few. I want you to know that we are grateful for every one of you and all that you do. We are thanking God daily for the blessing of love we are recieving from you. Thank you so much.
Jamie
Today they tested all the levels in his blood and although his platets were in good numbers his red blood count was down very low again so they gave him a red blood transfusion this morning. He napped for several hours today and when he woke up he was rested and the transfusion was finished so he felt much better. We walked around our floor because he is not aloud of our floor without a mask and he didn't want to wear a mask. Honestly though I am glad he doesn't because I don't really want him wandering the hospital anyway :). They had to start giving him a stool softner because one of the Chemo drugs call Vinchristine really makes it hard for him to go. We are praying that we will be able to counteract this once we get home with a really good diet so that he will not have to be on stool softners all the time.
Olivia went to Uncle Tim and Aunt Carol's yesterday. Ben (denny) slept at the hospital with little Ben last night so Matt and I could spend the evening together with Olivia. I think it really helped her to have a night with us. Valerie picked her up this morning with Baby Jack and took her to church with her and then home with her for the night. I stayed with Ben today and Matt slept now I am going to rest tonight and Matt will stay the night with Ben tonight.
We are praying that we get to go home tomorrow. It all depends on insurance so pray for us. I think Ben will do much better when we get him home. He has told us several times now that he thinks he is in trouble and that is why he is not aloud to go home with Mama, Daddy and Sissy. It makes me sad that he doesn't understand but I am praying that God keeps him comforted when I cannot.
Matt and I wanted to thank everybody. It is so hard to even keep up with all the people praying, babysitting, bringing food, visiting Ben, do laundry, cleaning our house....just to name a few. I want you to know that we are grateful for every one of you and all that you do. We are thanking God daily for the blessing of love we are recieving from you. Thank you so much.
Jamie
Friday, August 28, 2009
Friday Morning
Today we are hoping to get to go home so we will see how that works out. If we go home then Ben's next Bone Marrow Asperation (removing Marrow for testing) will be Monday. If we stay admitted today then they will do this tomorrow. He will not be put all the way under anymore they will be using conscience sedation(twilight). This sedation also keeps him from remembering what just happened and he wakes up very happy.
Friday Morning
Yesterday was a good day! Ben got a lot of rest that he needed, we asked to be moved to a different room that would be more quiet. The room we were in had an older boy who stayed up late so Ben wasn't really sleeping good at all. He took two naps yesterday and slept okay through the night. It is hard for him to sleep great because they come in every two hours to check his vitals and it usually wakes him up.
Ben had to have platelets last night because his count was low again. His NP (nuetraphils{white blood cells}) was only 30. They told us a child who is not sick with Leukemia would be above 5000!! He may or may not reach zero but either way he is immune system is really low right now.
My sister went home wednesday and my mom left monday. My dad is leaving this upcoming Monday and my Mother-in-law will be leaving on Sunday. We are so grateful they came to be with us it was such a blessing.
Yesterday we had to wait for the platelets because they had a shortage and could not get them to Ben right away. We found out that at times they do not have blood or platelets in the whole state and have to wait until they can be shipped. This worried us a bit and we are beginning to research more about blood drives or even just knowing if some people out there have the same blood type as Ben so we can call if needed. We are still learning about this so we will let you know if their is a need. They have let us know that they prefer that donors don't specify it for Ben only because blood is given expiration dates, but also if it is not specified for him then it can still be on shortage because the blood can be sent anywhere in the nation so we are not sure what we will do but the nurses told us that just in the last month they have had shortages that required blood to be shipped from another state. This only is a concern if Ben has any problems and needs an emergency transfusion if his levels are really low like when he was first admitted. Pray for us that God gives us the info we need on this. I will posting all the pictures on Facebook that Rita (mom-in-law) has taken since we have been in the hospital!
Thank you for your prayers!
Ben had to have platelets last night because his count was low again. His NP (nuetraphils{white blood cells}) was only 30. They told us a child who is not sick with Leukemia would be above 5000!! He may or may not reach zero but either way he is immune system is really low right now.
My sister went home wednesday and my mom left monday. My dad is leaving this upcoming Monday and my Mother-in-law will be leaving on Sunday. We are so grateful they came to be with us it was such a blessing.
Yesterday we had to wait for the platelets because they had a shortage and could not get them to Ben right away. We found out that at times they do not have blood or platelets in the whole state and have to wait until they can be shipped. This worried us a bit and we are beginning to research more about blood drives or even just knowing if some people out there have the same blood type as Ben so we can call if needed. We are still learning about this so we will let you know if their is a need. They have let us know that they prefer that donors don't specify it for Ben only because blood is given expiration dates, but also if it is not specified for him then it can still be on shortage because the blood can be sent anywhere in the nation so we are not sure what we will do but the nurses told us that just in the last month they have had shortages that required blood to be shipped from another state. This only is a concern if Ben has any problems and needs an emergency transfusion if his levels are really low like when he was first admitted. Pray for us that God gives us the info we need on this. I will posting all the pictures on Facebook that Rita (mom-in-law) has taken since we have been in the hospital!
Thank you for your prayers!
Wednesday, August 26, 2009
8-26-2009
By the way I forgot to tell you the Steroid that they gave Ben last Saturday he has to take for 28 days in a row. The biggest side effect is hunger and he ate the biggest breakfast today. I have no idea where he put all that food but it was good to see him eating again. He hasn't really had a normal appetite since we have been in here. :)
Also my son loves to let us know just how big his bowel movements are. Last night he said "Mom that was a big one! Good job for Ben!!" aaaahhh boys!!
Also my son loves to let us know just how big his bowel movements are. Last night he said "Mom that was a big one! Good job for Ben!!" aaaahhh boys!!
Wednesday Afternoon
I feel like I need to mention yet again how amazing our support has been. I am waking every morning with one of my first thoughts being of the huge numbers of prayers that are being made daily for Ben. Thank you so much.
Yesterday was a fairly easy day for Ben. Matt and I devoted the whole day to playing with him and cuddling with him. He was quiet but seemed to enjoy his day. The entire day was pretty uneventful until the evening. At six o'clock Ben had to have an injection in each thigh of his "P.E.G." another chemo drug. They numbed up his legs prior to the injection but he still felt them. He is a little champ though, took it like a man. I feel like my baby shouldn't have to take it so well but I am sure God is giving him a special strength reserved just for little ones. I know God is holding him tighter than me through this. Late in the night he told me he had to go potty and I got up and pulled back the covers and his sheets were soaked with blood. AAAGGGHH I ran into the hall probably white as a ghost and got the nurses. Ben had wiggled & tossed so much trying to go to sleep he had pulled a part his IV. Luckily they just had to clean it out and reattach the IV because he didn't pull out the needle. Then this morning the IV hose broke and they had to take out the needle in his port. But even though that wasn't the best we did make the best of it. I was able to give him a shower and let him stand in it as long as he wanted. Showers are comforting for him so he took a looooooooong one. They aren't going to hook a needle up for a couple of hours so he gets a long break were he doesn't have to be hooked up to any cords of any kind. Olivia came today to see him during the time were he wasn't hooked up so they got to play freely. We pulled them around on his floor in a wagon, then they walked around the floor out of the wagon. He was sad when she left but he was also tired from playing hard with her. It was good for him to see her.....Matt and I realized they have never been apart before. Poor guy he loves his "Sissy".
We are praying we get to go home soon!! Maybe tomorrow or the next day. It all depends on some paperwork getting done. Hopefully they won't take too much more time getting it done.
We love you all for your support!! Thank you for all the wonderful Birthday wishes....I had a surprise Serenade from some very special peoples....Matt brought in a cake and lit some candles and almost gave me a heart attack because the hospital has smoke detectors and I was afraid he would set off the sprinklers and get us in trouble :) Crazy Man!! Thank you EVERYONE!!
Yesterday was a fairly easy day for Ben. Matt and I devoted the whole day to playing with him and cuddling with him. He was quiet but seemed to enjoy his day. The entire day was pretty uneventful until the evening. At six o'clock Ben had to have an injection in each thigh of his "P.E.G." another chemo drug. They numbed up his legs prior to the injection but he still felt them. He is a little champ though, took it like a man. I feel like my baby shouldn't have to take it so well but I am sure God is giving him a special strength reserved just for little ones. I know God is holding him tighter than me through this. Late in the night he told me he had to go potty and I got up and pulled back the covers and his sheets were soaked with blood. AAAGGGHH I ran into the hall probably white as a ghost and got the nurses. Ben had wiggled & tossed so much trying to go to sleep he had pulled a part his IV. Luckily they just had to clean it out and reattach the IV because he didn't pull out the needle. Then this morning the IV hose broke and they had to take out the needle in his port. But even though that wasn't the best we did make the best of it. I was able to give him a shower and let him stand in it as long as he wanted. Showers are comforting for him so he took a looooooooong one. They aren't going to hook a needle up for a couple of hours so he gets a long break were he doesn't have to be hooked up to any cords of any kind. Olivia came today to see him during the time were he wasn't hooked up so they got to play freely. We pulled them around on his floor in a wagon, then they walked around the floor out of the wagon. He was sad when she left but he was also tired from playing hard with her. It was good for him to see her.....Matt and I realized they have never been apart before. Poor guy he loves his "Sissy".
We are praying we get to go home soon!! Maybe tomorrow or the next day. It all depends on some paperwork getting done. Hopefully they won't take too much more time getting it done.
We love you all for your support!! Thank you for all the wonderful Birthday wishes....I had a surprise Serenade from some very special peoples....Matt brought in a cake and lit some candles and almost gave me a heart attack because the hospital has smoke detectors and I was afraid he would set off the sprinklers and get us in trouble :) Crazy Man!! Thank you EVERYONE!!
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