Hey Everyone,
Just checking in to let you know we are good. Ben is recovering, its a long process the RSV & pneumonia really did a number on his lungs. He has difficulty walking, he is very weak. But he is in good spirits, he went to school for a couple hours two days this week already. Ben is pretty much confined to his wheel chair, and requires oxygen every once in a while. We went to clinic today and had a CT scan and saw the neurosurgeon so it was a long day. His counts are good, his CT looked great the procedure is doing exactly what it was supposed to, plenty of space for CNS fluid to circulate. Ben finally got his stitches out of his head so that is nice, and his blood work was good so he doesn't need to be on IVs at night because he is really working hard to eat and drink well. We are taking today off and resting we had a long night lots of coughing and breathing treatments. And we are saving our energy for this weekend.
Saturday, Lil Ben will be riding Alla (a Mardi Gras parade - for all you out of towners - we do Mardi Gras for about 2 weeks not just Fat Tuesday!) as long as he is feeling up to it. He was invited by Councilman Chris Roberts from Jefferson Parish to ride on his float with him! Lil Ben doesn't know yet, we didn't want to get him all excited and then have to tell him no that morning if the weathers not good enough or if he is not strong enough. So that will be a great surprise for him! Councilman Roberts has been wonderful, he has arranged for a police vehicle to pick us up at the house just before the parade so we don't have to wait and park and weave through giant crowds, and the police escort will stay with the float so if at anytime Ben needs to get off they will stop the float get us off and take us home. It would be impossible for us to do this without those special accommodations. So come watch the Krewe of Alla here on the Westbank!
We will definitely post pictures!
Sunday, well I'm sure you all know what Sunday is.......YES the SAINTS ARE GOING TO WIN THE SUPER BOWL ON SUNDAY!!!! We are all very excited for this! We are planning on hanging out and watching the game, no giant party - but daddy is going to use our LCD projector and show the game on the garage door in the drive way, so it will be life size! Don't tell the NFL they will probably fine us for "rebroadcasting with out the expressed written consent of the NFL". Our neighbors are having parties so they should enjoy the outside broadcast too!
Hope everyone has a great weekend!
Erin
Thursday, February 4, 2010
Thursday, January 28, 2010
Home
Hey Everyone
Sorry for not posting sooner just trying to get settled in and set up with all the new equipment. We came home late Tuesday afternoon. We had the last day of radiation yesterday and then doctors appointments, so today is the first day I've had to set things up and get us settled in.
Ben is doing good. Not quite up for school yet, but he says he wants to go full days not just for a few hours like mom suggests - so we will see. He is on an IV pump all night to give him fluids, he gets breathing treatments every few hours and requires suction several times trough out the day to help him clear his lungs. He has his port accessed all the time now so I can hook his IVs up at night. He is having more troubling getting around, he is very weak and he has very little lung capacity, but he is getting stronger every day.
He had a great visit from his teacher, his principle and a few other special teachers from the school. They brought an awesome card chain with a link note from every student at St Andrew's all 800!! And they have set it up so his he can see his class and they can see him through the computer - kind of like skype. Its fun, he loved seeing all his buddies.
So now we just need to build up our strength again and let that radiation kill the tumor!!! Have to be strong for the SUPERBOWL!!!! Thats right Ben's Saints are going to the SuperBowl for the first time!!! We think its because Ben did those tackling drills with them at the beginning of the season and picks some really great plays that Coach still runs. We are very excited - we definitely have SAINTS FEVER here!!!
We'll update again later! With Pictures!
Erin
Sorry for not posting sooner just trying to get settled in and set up with all the new equipment. We came home late Tuesday afternoon. We had the last day of radiation yesterday and then doctors appointments, so today is the first day I've had to set things up and get us settled in.
Ben is doing good. Not quite up for school yet, but he says he wants to go full days not just for a few hours like mom suggests - so we will see. He is on an IV pump all night to give him fluids, he gets breathing treatments every few hours and requires suction several times trough out the day to help him clear his lungs. He has his port accessed all the time now so I can hook his IVs up at night. He is having more troubling getting around, he is very weak and he has very little lung capacity, but he is getting stronger every day.
He had a great visit from his teacher, his principle and a few other special teachers from the school. They brought an awesome card chain with a link note from every student at St Andrew's all 800!! And they have set it up so his he can see his class and they can see him through the computer - kind of like skype. Its fun, he loved seeing all his buddies.
So now we just need to build up our strength again and let that radiation kill the tumor!!! Have to be strong for the SUPERBOWL!!!! Thats right Ben's Saints are going to the SuperBowl for the first time!!! We think its because Ben did those tackling drills with them at the beginning of the season and picks some really great plays that Coach still runs. We are very excited - we definitely have SAINTS FEVER here!!!
We'll update again later! With Pictures!
Erin
Saturday, January 23, 2010
Another few days
So we finally got to see Dr Velez today, yeah!!!! We love Dr Velez and hate the rotation system here - its stupid! But we talked with Dr Velez today and she thinks Ben is doing great. She is more worried about his nourishment than his breathing at this point. Because of the loss of his swallow reflex we can't let him drink thin liquids or crunchy foods so he's on a soft think diet so he doesn't aspirate. And he is not a big fan of the thickened liquids - so she wants to make sure we can get into him what he needs otherwise we will need a feeding tube.
So it looks like we will probably be here till Tuesday getting those things worked out. But he he is doing good so thats okay we will watch the SAINTS game tomorrow and scream really load no matter where we are, home or here! Ben is off oxygen and tomorrow they are taking him off IV and we will see how he does.
We'll let you know when there is more news. Sorry for the brief updates but Mr demanding is addicted to computer games now so I have to wrestle it away from him in order to post!
Erin
So it looks like we will probably be here till Tuesday getting those things worked out. But he he is doing good so thats okay we will watch the SAINTS game tomorrow and scream really load no matter where we are, home or here! Ben is off oxygen and tomorrow they are taking him off IV and we will see how he does.
We'll let you know when there is more news. Sorry for the brief updates but Mr demanding is addicted to computer games now so I have to wrestle it away from him in order to post!
Erin
Thursday, January 21, 2010
Doing good...still at the hospital
Big Thank You to Aunt Mego for doing the last update, we were a little busy and no Internet in ICU.
Ben is doing well, we moved out of ICU on Tuesday evening. He was still positive for RSV so we went to 4 center instead of 4 west the cancer floor. He is still on oxygen but doing really well. Actually he is yelling at me to give him the computer right now so he can play games!
He has been continuing on radiation we go by ambulance from Children's to Touro everyday. He had to stop his chemo temporarily due to his low blood counts. He had a transfusion the first night we were here so the counts are rebounding. He did a swallow study yesterday to figure out what types of foods he is aspirating on and which ones are safe. This is all tumor related and something we expected. He now can't eat or drink anything thinner than honey, and no crunchy things. So that is manageable. They gave us thickener and we have been testing out all our favorite drinks to see how they taste thick, so far our favorites are lemonade and chocolate milk.
Ben has a pulmonary function test and consult with a Pulmonalogist to sort out what is tumor, what is RSV, and what is because of the aspiration. Then we can try and get his breathing as good as possible and get him out of here.
Thank you to everyone for all the prayers and support. Thank you to our neighbor Ms Kim for spending the day here Tuesday taking care of Big Ben and I while Ben was in ICU. The trashey magazines have been a big hit with the night nurses too! And HUGE than you to the wonderful Ms Jessica for taking such good care of Shaun while we are here with Ben. He is having so much fun he didn't even want to go home with daddy last night!
I'll update agin soon.
Erin
Ben is doing well, we moved out of ICU on Tuesday evening. He was still positive for RSV so we went to 4 center instead of 4 west the cancer floor. He is still on oxygen but doing really well. Actually he is yelling at me to give him the computer right now so he can play games!
He has been continuing on radiation we go by ambulance from Children's to Touro everyday. He had to stop his chemo temporarily due to his low blood counts. He had a transfusion the first night we were here so the counts are rebounding. He did a swallow study yesterday to figure out what types of foods he is aspirating on and which ones are safe. This is all tumor related and something we expected. He now can't eat or drink anything thinner than honey, and no crunchy things. So that is manageable. They gave us thickener and we have been testing out all our favorite drinks to see how they taste thick, so far our favorites are lemonade and chocolate milk.
Ben has a pulmonary function test and consult with a Pulmonalogist to sort out what is tumor, what is RSV, and what is because of the aspiration. Then we can try and get his breathing as good as possible and get him out of here.
Thank you to everyone for all the prayers and support. Thank you to our neighbor Ms Kim for spending the day here Tuesday taking care of Big Ben and I while Ben was in ICU. The trashey magazines have been a big hit with the night nurses too! And HUGE than you to the wonderful Ms Jessica for taking such good care of Shaun while we are here with Ben. He is having so much fun he didn't even want to go home with daddy last night!
I'll update agin soon.
Erin
Tuesday, January 19, 2010
Trip to Children's Hospital
Hey folks, Aunt Mego here.
Erin asked me to share a short update. Some of you may know that Ben aspirated at home and was taken to the ER yesterday afternoon by ambulance. He was admitted to the PICU for monitoring last night. Now for the good news, he is doing really well now and they are planning to transfer him to 4W today and keep him for a few days. Erin asked me to update the Blog as she knew lots of us would be worried about him this morning and she can't update it right now. As always, keep lil Ben in your hearts and prayers. More to come later when he is back on 4W with his favorite nurses.
Love Aunt Mego
Erin asked me to share a short update. Some of you may know that Ben aspirated at home and was taken to the ER yesterday afternoon by ambulance. He was admitted to the PICU for monitoring last night. Now for the good news, he is doing really well now and they are planning to transfer him to 4W today and keep him for a few days. Erin asked me to update the Blog as she knew lots of us would be worried about him this morning and she can't update it right now. As always, keep lil Ben in your hearts and prayers. More to come later when he is back on 4W with his favorite nurses.
Love Aunt Mego
Thursday, January 14, 2010
Radiation went great!
Today was Ben's first day of radiation. He did set up on Monday, but today was the first treatment. So we made a day of it! He went to school this morning and then we left at lunch, went to radiation and then went to daddy's restaurant for lunch! Big Ben and I had to talk him into it, he wanted to go back to school - go figure. He had a great time and ate tons!
So we have changed his radiation time so he can go to school almost all day and then go to radiation! He will miss nap, and packing up at the end of the day, and maybe a story or two (but don't tell him about the stories or we will have to stay ALL day and pay the Radiation Team OVERTIME!!)
Please keep another DIPG family in your prayers tonight, Little Georgia from Australia earned her wings, unexpectedly today. She was quite a fighter!
So we have changed his radiation time so he can go to school almost all day and then go to radiation! He will miss nap, and packing up at the end of the day, and maybe a story or two (but don't tell him about the stories or we will have to stay ALL day and pay the Radiation Team OVERTIME!!)
Please keep another DIPG family in your prayers tonight, Little Georgia from Australia earned her wings, unexpectedly today. She was quite a fighter!
Monday, January 11, 2010
Radiation...Take two!
Hello all!
We just returned from meeting with Dr Z (Ben's radiation oncologist). He made his mask and we are all set to start radiation on Thursday. He will go for 10 treatments. Ben's doing good, recovering slowly from the RSV- which as it turns out is much harder on him than brain surgery! His surgery site looks great and he tells everyone he was wounded in a pirate sword fight. He is still getting breathing treatments every few hours around the clock, so mommy is pretty sleepy, Ben sleeps through them but I haven't figured out how to automate the machine to refill itself and switch on and off every four hours, so mommy doesn't sleep through them - oh well its like those first few weeks with a newborn!
We are going to go back to school tomorrow. Ben is up for it and we have scheduled his radiation appointments for afternoon so we can do the morning at school and then go to radiation at lunch and then home to nap before we go get Shaun. We are hopeful radiation will give us the same great results it did last time.
Besides the fact that it is FREEZING in New Orleans (we are still considered the South right??!??) we are doing good, and having fun as always. We will post again soon!
Much Love
Erin
We just returned from meeting with Dr Z (Ben's radiation oncologist). He made his mask and we are all set to start radiation on Thursday. He will go for 10 treatments. Ben's doing good, recovering slowly from the RSV- which as it turns out is much harder on him than brain surgery! His surgery site looks great and he tells everyone he was wounded in a pirate sword fight. He is still getting breathing treatments every few hours around the clock, so mommy is pretty sleepy, Ben sleeps through them but I haven't figured out how to automate the machine to refill itself and switch on and off every four hours, so mommy doesn't sleep through them - oh well its like those first few weeks with a newborn!
We are going to go back to school tomorrow. Ben is up for it and we have scheduled his radiation appointments for afternoon so we can do the morning at school and then go to radiation at lunch and then home to nap before we go get Shaun. We are hopeful radiation will give us the same great results it did last time.
Besides the fact that it is FREEZING in New Orleans (we are still considered the South right??!??) we are doing good, and having fun as always. We will post again soon!
Much Love
Erin
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