It's been a while since I've written. Apparently hospitals are still a part of our life at the moment. I took Brooklyn to the ER last Friday because she had that barking seal cough. And of course I don't hear it until 5pm Friday evening when Dr's are away and urgent care wont take anyone until they are 2, so back to the ER we went.
It turned out she did have a mild case of croup, poor little thing. She has been on steroids to help open the throat and it just makes her a little demon and not herself. She is only sleeping about 6 hours at night and then thinks it's time to party so the last couple nights I've been up at 3:30a, not fun for me! Good thing my mother in law is still here so I was able to take a long nap yesterday.
As far as Evan, he is doing really well. He's like 99% back to normal. He was back at work Monday and hasn't missed a day. I think he's glad to be back at work and getting things accomplished, laying in a hospital bed for a week really stinks! We go see the neurologist tomorrow for a follow up. He's driving, walking normal, talking normal and his vision is back. It's such a quick recovery, it's really nice to see him normal (well, as normal as he can be) :).
Now if we can only make these girls stop coughing so we can play outside. I tell ya, I have cabin fever and it aint pretty.
Tuesday, February 22, 2011
Friday, February 18, 2011
Thursday, February 17, 2011
Update 2/17
The neurologist finally came last night at 7pm! He said he got my page (you can page him through his office answering machine), wish I'd done that a lot earlier. I told him how I was waiting here for him from 7am, he asked why didn't call his office. I did!
So, he said that the general dr put an order in to do another MRI, this time of the whole spine. He thought it was unecessary that they do another MRI and he would be really suprised if anything showed up. He said he definitely thinks its the GBS.
I told him how I have been doing research about it all week he asked ME if I had found anything new about GBS! I said,
"Me?" I thought he was joking.
He says "Well you're doing all the research I just wondered if there was anything new with GB." Unfortunately not. Ha, kinda funny.
So, this morning he had his MRI at 8am. I just got here to the hospital and the neurologist was already in the room. He said MRI was normal. That in a week or so Evan will come back to him to do a nerve conduction study to test his nerves but that he should see improvement in 4-6 weeks probably. If it gets worse then we call the primary Dr, call him or go straight to the ER. (I think we will be heading down to the UCLA ER if that's the case).
He has one more night of treatment, tonight, and then he will be released tomorrow. Yay! :) Except that we just don't know what his physical future holds. So lets hope it doesn't get worse.
The general Dr. just came in as well and said he is fine and he will be released tomorrow and he will see him tomorrow.
Speech therapist came in the room and said she can tell that his speech is better and to continue doing excerices. Outpatient therapy was recommended.
Physical therapist just took him out and said he was her best patient and that he's doing great. To continue doing outpatient physical therapy.
We have a copy of the MRI with us just in case. I paged the Case Worker just to follow up with her and....what else am I forgetting.
Its nice to see an end to being here in the hospital, we just hope its a good thing. :)
So, he said that the general dr put an order in to do another MRI, this time of the whole spine. He thought it was unecessary that they do another MRI and he would be really suprised if anything showed up. He said he definitely thinks its the GBS.
I told him how I have been doing research about it all week he asked ME if I had found anything new about GBS! I said,
"Me?" I thought he was joking.
He says "Well you're doing all the research I just wondered if there was anything new with GB." Unfortunately not. Ha, kinda funny.
So, this morning he had his MRI at 8am. I just got here to the hospital and the neurologist was already in the room. He said MRI was normal. That in a week or so Evan will come back to him to do a nerve conduction study to test his nerves but that he should see improvement in 4-6 weeks probably. If it gets worse then we call the primary Dr, call him or go straight to the ER. (I think we will be heading down to the UCLA ER if that's the case).
He has one more night of treatment, tonight, and then he will be released tomorrow. Yay! :) Except that we just don't know what his physical future holds. So lets hope it doesn't get worse.
The general Dr. just came in as well and said he is fine and he will be released tomorrow and he will see him tomorrow.
Speech therapist came in the room and said she can tell that his speech is better and to continue doing excerices. Outpatient therapy was recommended.
Physical therapist just took him out and said he was her best patient and that he's doing great. To continue doing outpatient physical therapy.
We have a copy of the MRI with us just in case. I paged the Case Worker just to follow up with her and....what else am I forgetting.
Its nice to see an end to being here in the hospital, we just hope its a good thing. :)
Wednesday, February 16, 2011
Update 2/16...or lack there of.
Another day of waiting. I've been here since 7:30am waiting to speak to the neurologist, it is not 6:08pm...still hoping he will pop in.
Mornings are a waste. Nobody, (general dr, speech/physical/respiratory therapist and Neuro) shows up until about noon. Which then means any sort of treatment or test has to wait until the next day.
I voiced this to the general Dr. and he said they are doing an MRI from the head to the butt tomorrow. He gave another name of what this might be, get ready its a long one: Acute Disseminated Encephalomyelitis. Have done some research on it, ummm not to clear what it is. It seems like its a real general diagnosis.
We have voiced our frusturation with our case worker about the slowness of things, hoping our persistence pays off. She was going to call the neurologist and get back to me. I haven't had a phone call or seen her come back in.
Physical therapist determined that there is definitely some weakness in his shoulders and legs. And he is not able to see peripherally out of his left eye. Some double vision when both eyes are open.
New symptoms are a little nausea and headaches.
I have a small notebook that I keep track of everything in...and a page of questions for the neurologist! I wish he would come in, I've paged him myself an hour ago. "Dr. Yuriy Verpukhovskiy, if you are out there we are waiting!!!!!!!!!!!!!!!"
Waiting, waiting, waiting........
Thanks to all the people that stopped by today, its nice to see your smiling faces. :)
Mornings are a waste. Nobody, (general dr, speech/physical/respiratory therapist and Neuro) shows up until about noon. Which then means any sort of treatment or test has to wait until the next day.
I voiced this to the general Dr. and he said they are doing an MRI from the head to the butt tomorrow. He gave another name of what this might be, get ready its a long one: Acute Disseminated Encephalomyelitis. Have done some research on it, ummm not to clear what it is. It seems like its a real general diagnosis.
We have voiced our frusturation with our case worker about the slowness of things, hoping our persistence pays off. She was going to call the neurologist and get back to me. I haven't had a phone call or seen her come back in.
Physical therapist determined that there is definitely some weakness in his shoulders and legs. And he is not able to see peripherally out of his left eye. Some double vision when both eyes are open.
New symptoms are a little nausea and headaches.
I have a small notebook that I keep track of everything in...and a page of questions for the neurologist! I wish he would come in, I've paged him myself an hour ago. "Dr. Yuriy Verpukhovskiy, if you are out there we are waiting!!!!!!!!!!!!!!!"
Waiting, waiting, waiting........
Thanks to all the people that stopped by today, its nice to see your smiling faces. :)
Tuesday, February 15, 2011
Update 2/15
He was moved to Valley Presbeyterian Hospital in Van Nuys yesterday. We've heard from everyone (not sure if they're just saying this) that its a better hospital, so that's good. If anything its a second opinion. The only drawback is we're kind of starting fresh.
I've been there all day today, didn't want to miss seeing the Dr's. A general Dr. and a Nuerologist came in. They haven't ruled out Guillian Barre but today Nuero also said Miller Fisher, which is essentially the same thing as GB. They are still treating him as if he has it, so.... We have no idea what's going on yet.
Tomorrow I will spend most of the day there as well. Hoping the nuerologist will send for more tests. I'm researching all day and trying to be a pain in the butt to get some answers. I don't know if its working or not. Hopefully tomorrow will be a better, more informative day for us since today was pretty much a waste. Not only did they move him hospitals yesterday, but they moved him floors early afternoon today. Which then we get a new nurse and we are asked the same questions "So what has been happening?" and then its wait, wait, wait.....
I'm trying to be patient...I pretty much have to be patient, it's no fun.
Will keep you all posted. Thanks again for the babysitting, meals, visits, texts, emails, thoughts and prayers and for all the things happening that I don't know about. THANK YOU!
This probably sounds bratty but Jill is handling all our meals and stuff like that right now so call her. I can't keep up with the texts anymore, sorry but I will try to post something every day to keep everyone informed.
This is just crazy.
I've been there all day today, didn't want to miss seeing the Dr's. A general Dr. and a Nuerologist came in. They haven't ruled out Guillian Barre but today Nuero also said Miller Fisher, which is essentially the same thing as GB. They are still treating him as if he has it, so.... We have no idea what's going on yet.
Tomorrow I will spend most of the day there as well. Hoping the nuerologist will send for more tests. I'm researching all day and trying to be a pain in the butt to get some answers. I don't know if its working or not. Hopefully tomorrow will be a better, more informative day for us since today was pretty much a waste. Not only did they move him hospitals yesterday, but they moved him floors early afternoon today. Which then we get a new nurse and we are asked the same questions "So what has been happening?" and then its wait, wait, wait.....
I'm trying to be patient...I pretty much have to be patient, it's no fun.
Will keep you all posted. Thanks again for the babysitting, meals, visits, texts, emails, thoughts and prayers and for all the things happening that I don't know about. THANK YOU!
This probably sounds bratty but Jill is handling all our meals and stuff like that right now so call her. I can't keep up with the texts anymore, sorry but I will try to post something every day to keep everyone informed.
This is just crazy.
Monday, February 14, 2011
Evan's Status
It's been a couple of days so I thought people might want to know what's been happening with Evan.
We took him to the hospital Saturday morning because he was feeling weak, walking and talking funny and had numbness in his limbs. After a Cat-scan and chest x-ray they said he had an acute sinusitis and sent him home with nasal spray and antibiotics. I called his friend who's an Ear, Nose and Throat Dr. (ENT) and he said that the numbness and tinglyness was not normal for a sinus infection and said he might need an MRI and need to be monitored.
Later that day he was getting worse so I took him back to the ER around 10pm. They agreed that it seemed like something more neurological so they admitted him in the hospital by 3am.
Sunday he received an MRI and a spinal tap. The MRI came back normal. They were thinking he has Guillain Barre Syndrome and the spinal tap was supposed to confirm that but his ST came back normal as well.
Right now we don't know what it is but the are treating him as if he had Guillain Barre which is an auto-immune disorder (look it up on webmd.com).
Basically his body is attacking itself and so his nerves are being affected which is why its hard for him to walk and talk. He is ok, just frusturated to be in a hospital and not know what is going on. We just want answers.
He was transferred to another hospital, because of insurance issues, but its actually a better hospital and it will be nice to have a 2nd opinion. He is working with a neurologist, speech and physical therapy. He will be fine, recovery might be longer than hoped but we are hoping and praying for the best.
I have had more help and support from our ward than I know what to do with! Which is great. Evan's mom got here today and my sister has been here since Fri night. People have been amazing and I feel like the weight of the situation has really been lifted from my shoulders because of all the people helping and praying for us, so thank you from the bottom of our hearts. We can feel your prayers.
I'm ok. Too busy to deal with it but hanging in there. Just want my husband home and ok. I will keep you all posted.
We took him to the hospital Saturday morning because he was feeling weak, walking and talking funny and had numbness in his limbs. After a Cat-scan and chest x-ray they said he had an acute sinusitis and sent him home with nasal spray and antibiotics. I called his friend who's an Ear, Nose and Throat Dr. (ENT) and he said that the numbness and tinglyness was not normal for a sinus infection and said he might need an MRI and need to be monitored.
Later that day he was getting worse so I took him back to the ER around 10pm. They agreed that it seemed like something more neurological so they admitted him in the hospital by 3am.
Sunday he received an MRI and a spinal tap. The MRI came back normal. They were thinking he has Guillain Barre Syndrome and the spinal tap was supposed to confirm that but his ST came back normal as well.
Right now we don't know what it is but the are treating him as if he had Guillain Barre which is an auto-immune disorder (look it up on webmd.com).
Basically his body is attacking itself and so his nerves are being affected which is why its hard for him to walk and talk. He is ok, just frusturated to be in a hospital and not know what is going on. We just want answers.
He was transferred to another hospital, because of insurance issues, but its actually a better hospital and it will be nice to have a 2nd opinion. He is working with a neurologist, speech and physical therapy. He will be fine, recovery might be longer than hoped but we are hoping and praying for the best.
I have had more help and support from our ward than I know what to do with! Which is great. Evan's mom got here today and my sister has been here since Fri night. People have been amazing and I feel like the weight of the situation has really been lifted from my shoulders because of all the people helping and praying for us, so thank you from the bottom of our hearts. We can feel your prayers.
I'm ok. Too busy to deal with it but hanging in there. Just want my husband home and ok. I will keep you all posted.
Tuesday, February 8, 2011
Soccer
Daddy bought Kelsey a soccer ball and they were both excited to get out and play. I was joking with him saying she wasn't very good at it...guess she'll just have to dance. But, she was actually pretty good and really getting the hang of it!Needless to say...her first dance class will be this Friday! :) ha
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