Eric moved from the ICU yesterday. The move went smoothly for him, unlike a week ago when a similar move was too much for him. Clear proof of the improvement he has made in that time.
One of those improvements is that he now has a valve for his trach that allows him to talk. The voice is very weak, but I'm convinced it will improve in the next few days. He was anxious to reach this milestone so he could visit with folks. He also sat up in a chair for 1/2 hour yesterday. It must have been a relief for his tired back!
The doctors are nearly ready to release him from the hospital to a critical, long-term care facility. Melissa chose the facility in Lafayette for this next step in his care. We are hoping (if all goes well) to move there sometime next week.
We have been able to keep him up-to-date on all the cards and blog messages you have been sending. He really enjoys them. Thanks to all of you for your thoughts and prayers.
Kathy
Friday, February 5, 2010
Wednesday, February 3, 2010
Spinal Tap and More Sleep
Hi Everyone,
Eric had his spinal tap around noon today, and everything went fine. Eric asked Sara and me to stay in the room with him during the procedure, and he did really well. I know I would be so scared I would be bawling, but he barely even flinched. :) They were able to take a sample of his fluid, measure the fluid pressure, and give him the prophylactic chemo treatment. The chemo was literally green. We told him that they were injecting Mountain Dew into his spinal fluid. :) After the spinal tap, he was able to fall asleep and has been sleeping since. The poor guy needed sleep so badly. He slept well last night (though he thinks he got only 4 hrs, he really got much more), but he has a week's worth to make up. To tell you the truth, I was able to take a 2 hr nap as well, which did wonders.
When he's awake, we've started reading everyone's blog comments and cards to him. He really really likes hearing from everyone. We've only made it partially through the stack of cards we've received (we've gotten over a 100!!!) because we don't want to tire him out too much too fast.
That's pretty much all for today. Thank goodness for another calm day and sleep!
Love,
Melissa
Eric had his spinal tap around noon today, and everything went fine. Eric asked Sara and me to stay in the room with him during the procedure, and he did really well. I know I would be so scared I would be bawling, but he barely even flinched. :) They were able to take a sample of his fluid, measure the fluid pressure, and give him the prophylactic chemo treatment. The chemo was literally green. We told him that they were injecting Mountain Dew into his spinal fluid. :) After the spinal tap, he was able to fall asleep and has been sleeping since. The poor guy needed sleep so badly. He slept well last night (though he thinks he got only 4 hrs, he really got much more), but he has a week's worth to make up. To tell you the truth, I was able to take a 2 hr nap as well, which did wonders.
When he's awake, we've started reading everyone's blog comments and cards to him. He really really likes hearing from everyone. We've only made it partially through the stack of cards we've received (we've gotten over a 100!!!) because we don't want to tire him out too much too fast.
That's pretty much all for today. Thank goodness for another calm day and sleep!
Love,
Melissa
Busy Tues after the seizure
Hi everyone,
As I posted in the status update last night, Eric had a 3rd seizure on Monday night/very early Tuesday morning. It lasted about 3 minutes. It's very scary to watch. I can't believe Melissa has watched him go through this 3 times. Strangely, Eric says he remembers this seizure. He doesn't remember the other 2 seizures, which is good. After the seizure, Eric had a CT scan at 1:15 am. It didn't show any changes in his brain. Eric was pretty responsive and talking to us less than 45 mins after the seizure. He didn't get much sleep after this, due to all the activity and nurses checking on him.
Eric continues to improve in breathing and use of his body. He can now scratch his own nose. :)However, the stress of moving his weak body is causing tremors, especially in his left arm. The doctors feel these are not related to the seizure activity, but rather muscle exhaustion.
Eric had an ultrasound of his left arm at 10:30 AM to check on the clot in his armpit. The technician said it didn't show any changes in the clot area. This is good and bad. Good that the clot hasn't increased or move, but we would like for the clot to dissipate as soon as possible.
The neurologist visited about 11:45 am. He said Eric's seizures are not a concern for brain damage, unless they are a sign of some other problem. The doctor ordered a spinal tap for tomorrow at 10:00 AM. The objectives are 1) measure spinal pressure to determine if his double vision is caused by this 2) look for leukemic cells 3) look for infection (although they are not expecting to find infection). During the spinal tap, they plan to give a prophylactic chemo treatment. The previous chemo back in Dec did not enter his spinal fluid, and this "maintenance" chemo should stay within his spinal system - not enter the other systems. We are glad they can give some more chemo. They feel Eric's too weak right now to get the normal round of maintenance chemo, so this is an alternative way to give it.
Eric hasn't been able to get a good night's sleep in a week. The doctors feel the seizures he is having may be stress relate (not actually neuro related), and lack of sleep lowers your seizure threshold. So, we made a big point of letting Eric get has much sleep as possible after all the doctors came through today. He has slept since 5pm, waking occasionally, but then falling right back asleep. I'm hoping he'll get a good 10-12 hours of sleep.
We read everyone's postings/messages to him today. Made him really happy.
When Eric woke up around 11:30pm asking for ice chips, he asked if I had heard about his good friends that just had a baby. He was excited for them and wanted to share the news!! :) So amazing to have such a loving brother.
Love,
Sara
As I posted in the status update last night, Eric had a 3rd seizure on Monday night/very early Tuesday morning. It lasted about 3 minutes. It's very scary to watch. I can't believe Melissa has watched him go through this 3 times. Strangely, Eric says he remembers this seizure. He doesn't remember the other 2 seizures, which is good. After the seizure, Eric had a CT scan at 1:15 am. It didn't show any changes in his brain. Eric was pretty responsive and talking to us less than 45 mins after the seizure. He didn't get much sleep after this, due to all the activity and nurses checking on him.
Eric continues to improve in breathing and use of his body. He can now scratch his own nose. :)However, the stress of moving his weak body is causing tremors, especially in his left arm. The doctors feel these are not related to the seizure activity, but rather muscle exhaustion.
Eric had an ultrasound of his left arm at 10:30 AM to check on the clot in his armpit. The technician said it didn't show any changes in the clot area. This is good and bad. Good that the clot hasn't increased or move, but we would like for the clot to dissipate as soon as possible.
The neurologist visited about 11:45 am. He said Eric's seizures are not a concern for brain damage, unless they are a sign of some other problem. The doctor ordered a spinal tap for tomorrow at 10:00 AM. The objectives are 1) measure spinal pressure to determine if his double vision is caused by this 2) look for leukemic cells 3) look for infection (although they are not expecting to find infection). During the spinal tap, they plan to give a prophylactic chemo treatment. The previous chemo back in Dec did not enter his spinal fluid, and this "maintenance" chemo should stay within his spinal system - not enter the other systems. We are glad they can give some more chemo. They feel Eric's too weak right now to get the normal round of maintenance chemo, so this is an alternative way to give it.
Eric hasn't been able to get a good night's sleep in a week. The doctors feel the seizures he is having may be stress relate (not actually neuro related), and lack of sleep lowers your seizure threshold. So, we made a big point of letting Eric get has much sleep as possible after all the doctors came through today. He has slept since 5pm, waking occasionally, but then falling right back asleep. I'm hoping he'll get a good 10-12 hours of sleep.
We read everyone's postings/messages to him today. Made him really happy.
When Eric woke up around 11:30pm asking for ice chips, he asked if I had heard about his good friends that just had a baby. He was excited for them and wanted to share the news!! :) So amazing to have such a loving brother.
Love,
Sara
Monday, February 1, 2010
Showed Eric the Blog tonight
Hi,
Thought everyone would enjoy knowing Eric saw the blog today. He woke up around 2am this morning and asked what day it was. I told him it was Sunday Jan 31st. He said, wasn't that yesterday? :) Made me laugh. Yeah, it was yesterday. He was right, it's Monday Feb 1st, very early in the morning.
He asked if we had been keeping his supervisor up to date. I told him we had, along with lots of other people. I told him we started the blog like he mentioned. I asked if he wanted to see it, and he did. He liked it. He was surprised by how many people are reading the blog.
:)
Love,
Sara
Thought everyone would enjoy knowing Eric saw the blog today. He woke up around 2am this morning and asked what day it was. I told him it was Sunday Jan 31st. He said, wasn't that yesterday? :) Made me laugh. Yeah, it was yesterday. He was right, it's Monday Feb 1st, very early in the morning.
He asked if we had been keeping his supervisor up to date. I told him we had, along with lots of other people. I told him we started the blog like he mentioned. I asked if he wanted to see it, and he did. He liked it. He was surprised by how many people are reading the blog.
:)
Love,
Sara
Sunday, January 31, 2010
Good recovery from the seizure
Hi,
Eric has made a good recovery from his seizure. He had an MRI last night. It went well. He slept peacefully during the night.
This morning the neurology doctors talked to us about the results. They found very, very small bleeds/clots in his brain. They believe these are from his leukemia and all the clotting issues he was having. They are certain these small bleeds are the cause of the two seizures. They have placed Eric on anti-seizure medicine, which should prevent any future seizures. They said his body will absorb the blood in the brain. So, we believe this was caused by the leukemia, and his body will fix the issue in time.
Also, Eric was removed from the vent support and is again breathing on his own with just the oxygen rich air.
Eric's had a lot of visitors today. He loved seeing and talking to everyone. It tired him out, but you could really tell the happiness in his face to see friends and family. :)
Love,
Sara
Eric has made a good recovery from his seizure. He had an MRI last night. It went well. He slept peacefully during the night.
This morning the neurology doctors talked to us about the results. They found very, very small bleeds/clots in his brain. They believe these are from his leukemia and all the clotting issues he was having. They are certain these small bleeds are the cause of the two seizures. They have placed Eric on anti-seizure medicine, which should prevent any future seizures. They said his body will absorb the blood in the brain. So, we believe this was caused by the leukemia, and his body will fix the issue in time.
Also, Eric was removed from the vent support and is again breathing on his own with just the oxygen rich air.
Eric's had a lot of visitors today. He loved seeing and talking to everyone. It tired him out, but you could really tell the happiness in his face to see friends and family. :)
Love,
Sara
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