Great day!
They just finished his breathing trial a little bit ago and it lasted over 13 hours!!! Amazing!! We are all so ready for that vent to come out!
Also, today he showed so much more improvement from even yesterday. He was more awake, he tracked you with his eyes, was motioning more with his hands, and was also nodding his head 'yes' and shaking his head 'no'. Soooooo Coooool! They even had to re-adjust his restraints because he was reaching for things.
We are all just so relieved he is showing the improvement that he is in just 2 days. The staff at the hospital seem happier with how things are going and we all just feel like that turning point we were looking for has happened. Obviously, we have a long road to recovery but at least they aren't in there ALL the time. We take it as a good sign if they leave his room longer than 10 minutes now.
I may start posting once a day as he improves because like I have said before, no news is good news.
As always and forever, we are all so thankful for your continuous love and support with all this. To our families, friends, co-workers, church members and everyone in between....we THANK YOU!
~Betsy
Saturday, April 24, 2010
Day 17 Morning Update
Resting...that's what he's doing. He had an uneventful night and we like that. Heading down there in a bit and will probably post later this evening. Remember...no news is good news. :)
~Betsy
~Betsy
Friday, April 23, 2010
Our Meeting Today
We had our meeting today with a doctor, social worker, chaplain, and care management person. It was very nice to be able to sit down and talk about what's happened and what is probably going to happen. Here is the MAIN thing they said.....His prognosis is GOOD!!!! That was the question on all of our minds that not one person wanted to ask, for fear of hearing the response. When they told us he was in 'grave condition' two weeks ago, I went and looked up exactly what the word means in medical terms. It's pretty much worse than critical. When you hear that, you really don't want to ask the doctors what his prognosis is. The doctor today said they are 'very happy' with how he is now. :)
Here are some highlights:
Here are some highlights:
- They have not found an aneurysm and will be doing an angiogram a little later to make sure there is not one hiding behind the blood around his brain.
- They are purposely keeping his BP raised to help decrease vasospasms.
- They said getting pneumonia and a temperature are common.
- When he gets his new flap, it will be made out of porcelain. They can mold it better to his head that way.
- Someone had asked about the radiation he is going through with all his CT scans right now. They said that the amount of radiation you get from flying cross country is about equivalent to a chest x-ray. At this point, the CT scans and x-rays are far too important than worrying about the radiation.
- When asked if he will bleed again, they said usually they stop and don't start again. Since he has PKD, then there is that risk but they will be monitoring him very closely from now on. As far as how often he has CTs in the future, it's hard to say, but they will probably be pretty frequent.
- He will get a really cool helmet to wear. (no teasing!!) I think we're going to have the body shop personalize it for him. :)
- He had a 7 Hour breathing test today!! Wow! The only reason they stopped was because he was going down for a CT.
- The CT from today looked really good.
- Another thing they mentioned is that he probably won't remember this right now. In fact, the staff in the room said most patients don't remember the staff that worked with at this point. Kind of weird but I guess it's a good thing.
What now?
- Two things have to happen in order for him to leave the Neuro ICU and go to the 'Floor'. He has to be off the ventilator and his vasospasms have to stop. They said the typical time patients like this are in the ICU is about 4 weeks.
- Once they go to the 'floor', they are more 'normal' patients. They don't have their own personal nurse anymore and then they start getting more stable and start rehab.
- After the 'floor', they go into rehab. We are really hoping rehab gets to be in Wenatchee. It would be wonderful for him to see the kids when they are done with school and for Diane to sleep in her own bed. I bet they are both missing it....:)
- We asked about what part of his brain was affected. They said he may have trouble with a lot of things but speech shouldn't be affected since that's the left side of the brain. The big thing they see is something they called 'Neglect'. This is where he thinks he's moving the left side of his body but it's not moving. As of now, we really can't say for sure what's been damaged, what can heal, etc. Those are more things we'll learn as the days go on.
Today was bittersweet. Going in to see him, he'll open his eyes and just stare. I mean it, just stare. He had them open for about 10 minutes when we first got there and he kind of looks around, but mostly he just stares at the ceiling. He is moving both feet and hands when asked to. They are slight movements but he is doing it. Honestly, it's hard for all of us to see him like this but know this too is temporary and we will all be there to help him get better each and every day. Even if it's just holding his hand and rubbing his feet. We love you!
~Betsy
How's Diane?
OK so I realized yesterday when Kate from the YMCA came to visit me that while we all care about how Scott is, there are some following this blog that care about the wife too. So here's how the wife is coping, from Diane herself :)
First I have to say that over all, I and my team of specialists at the hospital: a social worker, a minister and Scott's nurses, all feel I'm handling things very well given the situation I'm in. Come on I live in a Hospital, I'm not the queen of cheerfulness by any means, but I'm good. I, right a long with Scott, have had ups and downs. I have experienced a wide range of emotions and often times they change every minute. They range from shear panic and fear to extreme joy.
~ One example is this brain stem swelling on Wednesday. I'm not sure if everyone gets how extremely serious this was. I sure didn't. It was a Brain Stem Herniation and if it continued to 'sink' he would have become brain dead. Luckily it was caught at the beginning of changing and measures were taken to stop in from getting worse. These measures worked...for now. Obviously he's awake again. I can't tell you how exhausting & difficult Wednesday was. But what a difference a day makes! Pure Joy came after shock and panic! Yes, God is hearing and answering all of our many prayers! I see it first hand each minute I'm in this hospital.
With Betsy getting strep throat, I had to find a doctor for me and get tested as well. Carolyn, one of the monitor techs, got me an appointment at an office here in the Medical Center. I now have a doctor of my own. Dr. McHugh is great! He found no strep for me, gave me meds to help with my allergies, and sleeping. (I had to NyQuil it up Wednesday night. He said while this method works, he'd rather give me a prescription sleep aid) But most of all he talked to me about me. He said it was OK to get out for a little bit. He told me it was safe during the day and gave me ideas and directions on where to go. He is at least the 3rd person who has told me this. My bishop tells me every time I talk to him, Claudia the social worker also tells me this and gave me places to go. I think I'm finally ready to listen :) I also can't explain how much it lifts a burden to know I have a doctor here in Seattle. Dr. McHugh said if I need to see him for anything, all I have to do is call and they will get me in right away! What a lift in moral.
With Kate coming to visit, she took me on a walk around the hospital to find food near by. I can't believe I've been here over 2 weeks and didn't know how many great little places there are with in walking distance! Thank you Y family for the food money, you can bet I'll use it to eat at the many places Kate found for me! I think I'll plan to run there and walk back, a little exercises will be good. On that note she feed me well. I can't tell you what the change in Scott and the full belly has done for me. Actually like I told the surgeons this morning, I finally feel like a real person again.
I do want to add that without Kate yesterday, I don't think I'd be as joyful as I am right now. It is amazing to see Scott awake but it also makes me sad. NOW as I told Dr. Husby I love Sad over Scared. He agrees. He is also in the I feel sad that's Scott's aware of his surroundings but can't do much about it, and being stuck in a bed barley moving hands and feet looking and the ceiling, that is enough to depress anyone. So he's getting a mild anti-depression med now. He's also getting Twilight read to him. I started Wednesday...I'm pretending that's what woke him up & not the doctors measures....hehee I told him I will continue to read to him until he can tell me to stop. That should get him off the ventilator faster than anything! Just so you know I did ask if I could read to him, click your toes together for yes. He clicked I read...too bad he doesn't get a choice of the book. Wow mean wife.
OK he's back from a CT. Dr Newell, who is 'The Man' when it come to neurosurgeons, wants one to just to see how things look. So I'm going back to reading.
Diane
First I have to say that over all, I and my team of specialists at the hospital: a social worker, a minister and Scott's nurses, all feel I'm handling things very well given the situation I'm in. Come on I live in a Hospital, I'm not the queen of cheerfulness by any means, but I'm good. I, right a long with Scott, have had ups and downs. I have experienced a wide range of emotions and often times they change every minute. They range from shear panic and fear to extreme joy.
~ One example is this brain stem swelling on Wednesday. I'm not sure if everyone gets how extremely serious this was. I sure didn't. It was a Brain Stem Herniation and if it continued to 'sink' he would have become brain dead. Luckily it was caught at the beginning of changing and measures were taken to stop in from getting worse. These measures worked...for now. Obviously he's awake again. I can't tell you how exhausting & difficult Wednesday was. But what a difference a day makes! Pure Joy came after shock and panic! Yes, God is hearing and answering all of our many prayers! I see it first hand each minute I'm in this hospital.
With Betsy getting strep throat, I had to find a doctor for me and get tested as well. Carolyn, one of the monitor techs, got me an appointment at an office here in the Medical Center. I now have a doctor of my own. Dr. McHugh is great! He found no strep for me, gave me meds to help with my allergies, and sleeping. (I had to NyQuil it up Wednesday night. He said while this method works, he'd rather give me a prescription sleep aid) But most of all he talked to me about me. He said it was OK to get out for a little bit. He told me it was safe during the day and gave me ideas and directions on where to go. He is at least the 3rd person who has told me this. My bishop tells me every time I talk to him, Claudia the social worker also tells me this and gave me places to go. I think I'm finally ready to listen :) I also can't explain how much it lifts a burden to know I have a doctor here in Seattle. Dr. McHugh said if I need to see him for anything, all I have to do is call and they will get me in right away! What a lift in moral.
With Kate coming to visit, she took me on a walk around the hospital to find food near by. I can't believe I've been here over 2 weeks and didn't know how many great little places there are with in walking distance! Thank you Y family for the food money, you can bet I'll use it to eat at the many places Kate found for me! I think I'll plan to run there and walk back, a little exercises will be good. On that note she feed me well. I can't tell you what the change in Scott and the full belly has done for me. Actually like I told the surgeons this morning, I finally feel like a real person again.
I do want to add that without Kate yesterday, I don't think I'd be as joyful as I am right now. It is amazing to see Scott awake but it also makes me sad. NOW as I told Dr. Husby I love Sad over Scared. He agrees. He is also in the I feel sad that's Scott's aware of his surroundings but can't do much about it, and being stuck in a bed barley moving hands and feet looking and the ceiling, that is enough to depress anyone. So he's getting a mild anti-depression med now. He's also getting Twilight read to him. I started Wednesday...I'm pretending that's what woke him up & not the doctors measures....hehee I told him I will continue to read to him until he can tell me to stop. That should get him off the ventilator faster than anything! Just so you know I did ask if I could read to him, click your toes together for yes. He clicked I read...too bad he doesn't get a choice of the book. Wow mean wife.
OK he's back from a CT. Dr Newell, who is 'The Man' when it come to neurosurgeons, wants one to just to see how things look. So I'm going back to reading.
Diane
Day 16 Morning Update
Overall....BETTER!!!! I'm not saying he's going to be up and eating Bon Bons tomorrow (do guys even do that?)...but he is improving.
The neurosurgeons said he's 'clinically' better today. He's pupils are responding more normally and he's following commands better today. Poor guy had to have the arm restraints put back on though because his naturally reflex is to reach up and want to pull the tube out of his throat. I seriously hope he doesn't think we have him in a mental hospital with those on. :) At least we're back to some kind of reaction and I hope they get to take the ventilator out soon. That's one of my questions for today. I will try and post a list of all the questions I want to ask later this morning.
When you look at him, his head is a little more swollen today. Doctors said that is to be expected after what they had to do yesterday and the position they have him in. No worries though, this is a different kind of fluid getting to his head, and will make him heal faster. No CT planned for today because the doctors can tell by other signs if the bad swelling is getting worse. That's a good thing.
Although we seem to have reached some kind of turning point, the doctors did tell Diane that Scott's case is not a text book case. I'm not sure if it has to do with his kidney disease or not, but when this normally happens to someone, they don't usually get all the things Scott got. Remember, we had to deal with higher BP, high temperature, pneumonia, swollen brain stem, excess swelling in brain, LP, higher HR, Staph/MRSA scare, multiple infections, not wanting to wake up very easily, PKD, and the main thing....what caused this? If there is no aneurysm and it was a brain hemorrhage, why? What is the likelihood this could happen again (not sure if we're ready to hear the answer to that one)?
~Betsy
The neurosurgeons said he's 'clinically' better today. He's pupils are responding more normally and he's following commands better today. Poor guy had to have the arm restraints put back on though because his naturally reflex is to reach up and want to pull the tube out of his throat. I seriously hope he doesn't think we have him in a mental hospital with those on. :) At least we're back to some kind of reaction and I hope they get to take the ventilator out soon. That's one of my questions for today. I will try and post a list of all the questions I want to ask later this morning.
When you look at him, his head is a little more swollen today. Doctors said that is to be expected after what they had to do yesterday and the position they have him in. No worries though, this is a different kind of fluid getting to his head, and will make him heal faster. No CT planned for today because the doctors can tell by other signs if the bad swelling is getting worse. That's a good thing.
Although we seem to have reached some kind of turning point, the doctors did tell Diane that Scott's case is not a text book case. I'm not sure if it has to do with his kidney disease or not, but when this normally happens to someone, they don't usually get all the things Scott got. Remember, we had to deal with higher BP, high temperature, pneumonia, swollen brain stem, excess swelling in brain, LP, higher HR, Staph/MRSA scare, multiple infections, not wanting to wake up very easily, PKD, and the main thing....what caused this? If there is no aneurysm and it was a brain hemorrhage, why? What is the likelihood this could happen again (not sure if we're ready to hear the answer to that one)?
~Betsy
Thursday, April 22, 2010
Day 15 Evening Update
You know, I kind of like the fact that there's not a whole lot to post tonight. That means his day was nice and calm. No news is extremely good news at this point.
I just got off the phone with his nurse and she said he's had a good day. They placed his new feeding tube today and that went really well. She said they had to sedate him a little for that and that he was resting at the moment. He's been waking up pretty well today and following commands by squeezing hands and wiggling toes. She even said she saw him wiggle his left toes...even though it was slight. This is great because we have known from the beginning that the left side was more affected than the right.
His temp was down to 98.8 just now and has been pretty low all day, despite it being higher during the night. It's obvious that the temp is still an issue but hopefully with each passing day, it gets better and better.
I don't foresee any major changes through tomorrow, so I'll call it a great day and hope for an even better night.
~Betsy
I just got off the phone with his nurse and she said he's had a good day. They placed his new feeding tube today and that went really well. She said they had to sedate him a little for that and that he was resting at the moment. He's been waking up pretty well today and following commands by squeezing hands and wiggling toes. She even said she saw him wiggle his left toes...even though it was slight. This is great because we have known from the beginning that the left side was more affected than the right.
His temp was down to 98.8 just now and has been pretty low all day, despite it being higher during the night. It's obvious that the temp is still an issue but hopefully with each passing day, it gets better and better.
I don't foresee any major changes through tomorrow, so I'll call it a great day and hope for an even better night.
~Betsy
Day 15 Morning Update
Scott had a GREAT night!
Isn't it weird that 15 days ago, we'd never have thought about being so happy to have Scott open his eyes and follow some commands?
Or be so excited to hear the doctor say his chest x-ray looks fantastic?
Or be so thrilled to have the doctor say he might not need the tracheostomy at all anymore?
Or be so glad that he did a breathing test on his own for 2 hours?
Now, obviously these are great things but as we've learned from all this...it is just one day at a time. But, we're happy about the beginning of this day! Scott will be on antibiotics for a couple more days and is still getting his new feeding tube placed today. Let's just cross our fingers that he continues to improve so he can come off the ventilator soon.
~Betsy
Isn't it weird that 15 days ago, we'd never have thought about being so happy to have Scott open his eyes and follow some commands?
Or be so excited to hear the doctor say his chest x-ray looks fantastic?
Or be so thrilled to have the doctor say he might not need the tracheostomy at all anymore?
Or be so glad that he did a breathing test on his own for 2 hours?
Now, obviously these are great things but as we've learned from all this...it is just one day at a time. But, we're happy about the beginning of this day! Scott will be on antibiotics for a couple more days and is still getting his new feeding tube placed today. Let's just cross our fingers that he continues to improve so he can come off the ventilator soon.
~Betsy
Step Forward, Diane
I have to post this morning because I want to shout from the roof tops and well there's enough people reading this that it's like I am....
I walked in this morning to Scott having his eyes opened!
Around midnight last night he started doing better. He follows commands and keeps his eyes opened a lot more. He is even moving his hand and feet on his own. A mix of all they did yesterday for his brain stem worked.
Look for Besty's post later after Med rounds to get all the info on how he is and what the plan for the day is.
Yay! Two steps back make the one step forward feel SUPER AMAZING!
Diane
I walked in this morning to Scott having his eyes opened!
Around midnight last night he started doing better. He follows commands and keeps his eyes opened a lot more. He is even moving his hand and feet on his own. A mix of all they did yesterday for his brain stem worked.
Look for Besty's post later after Med rounds to get all the info on how he is and what the plan for the day is.
Yay! Two steps back make the one step forward feel SUPER AMAZING!
Diane
Wednesday, April 21, 2010
Day 14 Evening Update
Can anyone believe that today marks the end of two weeks since all this started? We start week 3 tomorrow and I honestly don't know where the time has gone.
Here's the breakdown of today's events.
There were decisions made today to help Scott that you should know about.
Here's the breakdown of today's events.
There were decisions made today to help Scott that you should know about.
- He is getting a new feeding tube place tomorrow. Right now, he's got a feeding tube going up through his nose, which can be uncomfortable and I think can also get prone to infection. So, tomorrow, they are placing a new tube, using imaging/radiography, to place it directly into his small intestine (I believe, not his stomach - I will make sure). They will leave it in for 4-6 weeks, even if he doesn't need it so that a callus can form. That way when they take it out, there's no chance of leakage.
- They are going to be doing a trachestomy on Friday afternoon. I will be posting more on that after it happens.
- He had a blood patch done today. This is the first time I've mentioned this because it was something we weren't sure they would be doing or not. You can read more about it by clicking here. It went well and they said that it may or may not help, but there was really no harm in doing it.
- His MRI results showed some swelling of his brain stem. The neurosurgeons said that this is to be expected, but it's not the best thing to happen. They are doing everything they can to minimize this pressure, including giving him some more Mannitol . Just a side note here - they were giving him Mannitol quite a bit over a week ago and haven't really had to give him any since his LP last week. I had asked, 'if you know this drug really helps his brain swelling go down, why can't you give it ALL the time?'. Well, that's where the lovely PKD comes into play. They don't want to give him too much of anything that may damage his kidneys. Arghhh.....
- His CT scan from this morning showed a slight increase in swelling (yet another reason for the Mannitol) but I think this is to be expected. I remember the nurses telling us that it can be a roller coaster ride....lots of ups and downs.
Whew! American Idol is on and I'm going to go sit down with Farmer and try to relax for a bit. As always, more tomorrow. :)
~Betsy
Strep throat alert!
So, I have some news about me tonight. I know, this blog is about Scott's recovery, not me...but I just found out I have strep throat. First time in my life and my throat has hurt 10 times more before and I never had it. I normally wouldn't have even gone to the doctor but was told by both my loving husband and mom that I should probably go have it checked out, just in case. Yup, it was postivie. Think stress is getting to me?
If you've been around me lately and start to get a sore throat, please go get it checked out. I'm contagious until I've been on antibiotics for over 24 hours, so my plan to see Booger tomorrow is out.
Not that I need to remind anyone, but if you have flu, cold, or sore throat symptoms, let's stay away from Booger so he doesn't end up with just one more thing.
~Betsy
If you've been around me lately and start to get a sore throat, please go get it checked out. I'm contagious until I've been on antibiotics for over 24 hours, so my plan to see Booger tomorrow is out.
Not that I need to remind anyone, but if you have flu, cold, or sore throat symptoms, let's stay away from Booger so he doesn't end up with just one more thing.
~Betsy
Day 14 Morning Update
I just got off the phone with Diane and just wanted to quickly let everyone know that not much has changed since last night. He just went down for another CT and the MRI didn't show anything significant. I will try and get some more info on that.
They did another breathing test during the night and he did pretty good. Diane said his oxygen number on the machine is down to a 40, which I believe means the machine is giving him only 40% oxygen and he's getting the rest on his own. This is good, considering the number used to be much higher.
He's still not responding the way 'we'd' like him to. The doctors aren't overly concerned yet about that, since they said it can take a while for the drugs to wear off. Also, having just a slight temperature can make his body work too hard to wake up easily. I think we're all just a little frustrated that he's not waking up very quickly (and when he does it's for about 1 second), especially knowing that the sedation meds are turned off. Then again, I ask myself, would I want to wake up very well if I had a tube down my throat?
~Betsy
They did another breathing test during the night and he did pretty good. Diane said his oxygen number on the machine is down to a 40, which I believe means the machine is giving him only 40% oxygen and he's getting the rest on his own. This is good, considering the number used to be much higher.
He's still not responding the way 'we'd' like him to. The doctors aren't overly concerned yet about that, since they said it can take a while for the drugs to wear off. Also, having just a slight temperature can make his body work too hard to wake up easily. I think we're all just a little frustrated that he's not waking up very quickly (and when he does it's for about 1 second), especially knowing that the sedation meds are turned off. Then again, I ask myself, would I want to wake up very well if I had a tube down my throat?
~Betsy
Tuesday, April 20, 2010
Day 13 Evening Update
Not much has happened since I last posted. He did have his MRI this afternoon. The internal doctor told Diane a little bit about it but I feel more comforatable posting more after the neurosurgeons do their rounds in the morning. No worries, just don't want to post something I'll have to correct later. :)
His temp was down to 99.4 this evening and he is having a little more vasospasms today. So, they increased his BP again to help pump those blood vessels up (remember water hose?).
My aunt asked how increasing his BP affects his kidneys and I will make sure I find out more details on that. I do know that his creatinine level was at a 0.9 today, but was up to a 1.9 the day of surgery. Just so you know, our Uncle's creatinine level was at a 7.5 the day he had is kidney transplant last November. Knowing that, I'd say Scott is doing pretty good. The doctors are obviously focusing on healing the brain right now (and I get it) but for the rest of us Cruickshanks, in the back of our mind, we worry about the kidneys too. Even when Scott is fully recovered (and he WILL be fully recovered...you got that Booger?), he's still going to have PKD.
Tomorrow brings a new day and we are so thankful that Scott's with us and that things are improving. I will post more on the MRI results and anything else as soon as I know. Night night.
His temp was down to 99.4 this evening and he is having a little more vasospasms today. So, they increased his BP again to help pump those blood vessels up (remember water hose?).
My aunt asked how increasing his BP affects his kidneys and I will make sure I find out more details on that. I do know that his creatinine level was at a 0.9 today, but was up to a 1.9 the day of surgery. Just so you know, our Uncle's creatinine level was at a 7.5 the day he had is kidney transplant last November. Knowing that, I'd say Scott is doing pretty good. The doctors are obviously focusing on healing the brain right now (and I get it) but for the rest of us Cruickshanks, in the back of our mind, we worry about the kidneys too. Even when Scott is fully recovered (and he WILL be fully recovered...you got that Booger?), he's still going to have PKD.
Tomorrow brings a new day and we are so thankful that Scott's with us and that things are improving. I will post more on the MRI results and anything else as soon as I know. Night night.
Day 13 Mid-day Update - (MRI TODAY)
Update to this post....Scott is probably just finishing up having an MRI today (3:00).
Sorry this post is late this morning....I think the main reason is because there hasn't been very much change since last night.
He had a restful night. Had a breathing test this morning for about an hour and only had slightly raised BP and HR with that. The breathing test is done by turning off the ventilator to see how he breaths on his own. We're pretty sure that even though he does a pretty good job with that, we're still looking at having a trach placed this week. This will help him transition easier to breathing on his own. It will also make him more comfortable when he does wake up. Again, could you imagine waking up to having a tube down your throat and not panicking?
He had a CT this morning and that came back fine. The swelling is going down and the brain is 'settling' back into where it needs to be. No major changes and pretty much where the surgeons figured he'd be.
One of the main doctors (the internal guy - he deals with everything else going on with Scott) wanted to get an MRI soon...so that may be today. I've gotten pretty used to them telling us they want to do something and then it doesn't happen that day due to one thing or another. So, if he has an MRI, I will give more details afterwards. I will give more details of the tracheostomy (tracheotomy is an incision into the trachea (windpipe) that forms a temporary or permanent opening which is called a tracheostomy - I had to look up what the difference was in spelling) later also.
I can't remember if I'd mentioned another thing that's been going on and that's his blood count. He's got anemia right now and they've been keeping a close eye on that to determine if he will need a blood transfusion. This is still a possibility but Diane said that his blood count is up today...so that's good. We'd obviously like to avoid any procedure we can. I really don't want to see him have horse blood and start 'neighing' all the time....just kidding.
As always...more later. :) Thanks for reading!!!!!!!!
~Betsy
Sorry this post is late this morning....I think the main reason is because there hasn't been very much change since last night.
He had a restful night. Had a breathing test this morning for about an hour and only had slightly raised BP and HR with that. The breathing test is done by turning off the ventilator to see how he breaths on his own. We're pretty sure that even though he does a pretty good job with that, we're still looking at having a trach placed this week. This will help him transition easier to breathing on his own. It will also make him more comfortable when he does wake up. Again, could you imagine waking up to having a tube down your throat and not panicking?
He had a CT this morning and that came back fine. The swelling is going down and the brain is 'settling' back into where it needs to be. No major changes and pretty much where the surgeons figured he'd be.
One of the main doctors (the internal guy - he deals with everything else going on with Scott) wanted to get an MRI soon...so that may be today. I've gotten pretty used to them telling us they want to do something and then it doesn't happen that day due to one thing or another. So, if he has an MRI, I will give more details afterwards. I will give more details of the tracheostomy (tracheotomy is an incision into the trachea (windpipe) that forms a temporary or permanent opening which is called a tracheostomy - I had to look up what the difference was in spelling) later also.
I can't remember if I'd mentioned another thing that's been going on and that's his blood count. He's got anemia right now and they've been keeping a close eye on that to determine if he will need a blood transfusion. This is still a possibility but Diane said that his blood count is up today...so that's good. We'd obviously like to avoid any procedure we can. I really don't want to see him have horse blood and start 'neighing' all the time....just kidding.
As always...more later. :) Thanks for reading!!!!!!!!
~Betsy
Monday, April 19, 2010
Q & A Time
We are going to have a meeting on Friday with some of the main people helping with Scott. A doctor, nurse(s), care management, etc. will all be there. This is a chance for some of us to sit down and talk about what the plan of action is for Scott. We are probably going to go in there with many questions and I thought I would open this post up to all of you to ask questions you may have regarding what's happened to Scott and what the future holds (as much as we can know at this point). Please feel free to post as many comments as you want, ask questions you have and if I don't know them, I will either find out that day or ask at the meeting we're going to have. This is a very confusing time for all of us and there is so much we just don't know. Hopefully we'll be better educated after this to be able to explain to Scott what he's been going through. If we think we're confused, just imagine what he's going to be feeling....poor guy. As always, our energy is on him and making sure he's not scared or confused when he is more aware of his situation. We love you Booger and can't wait for you to truly be with us again.
~Betsy
~Betsy
Day 12 Evening Update
Couple things going on today...
Sedation:
Scott is off of sedation today. :) This is a good thing, only he's not responding the way they'd like him to. As of last night through this afternoon, he was harder to wake up than he was this weekend. The nurses/doctors said that the increase in his temperature makes his body work harder and that could be why he's not waking as easily. Also, the amount of sedation he was on and how long he was on it could be playing a role in that.
EEG: He was having an EEG when I got there this morning. They want to make sure he didn't have a seizure last night and rule out if that could be why he's a little harder to wake up. The neurosurgeons have to read the results and that could take a little while, so once I know, I'll update.
ICP Sensor: They took out the little sensor/tube thing-a-ma-gig in his head today. That's a good sign that the swelling in his head has gone down. His head even looked more concave than it did this weekend.
Two main things we need for him here:
1. We need his temperature to regulate and be normal. He heals so much faster without a temp.
2. We need him to wake up easier and be more responsive. The neurosurgeons did say they are happy with how he is responding neurologically (pupils reacting good, tracking with his eyes when awake, and squeezing their hand).
One of his best friends from high school, Jake, asked us last night if we get to call him the 'Booginator' now that he'll probably have a metal head. Hmmm...we'll have to see how he likes that. LOL!
~Betsy
Sedation:
Scott is off of sedation today. :) This is a good thing, only he's not responding the way they'd like him to. As of last night through this afternoon, he was harder to wake up than he was this weekend. The nurses/doctors said that the increase in his temperature makes his body work harder and that could be why he's not waking as easily. Also, the amount of sedation he was on and how long he was on it could be playing a role in that.
EEG: He was having an EEG when I got there this morning. They want to make sure he didn't have a seizure last night and rule out if that could be why he's a little harder to wake up. The neurosurgeons have to read the results and that could take a little while, so once I know, I'll update.
ICP Sensor: They took out the little sensor/tube thing-a-ma-gig in his head today. That's a good sign that the swelling in his head has gone down. His head even looked more concave than it did this weekend.
Two main things we need for him here:
1. We need his temperature to regulate and be normal. He heals so much faster without a temp.
2. We need him to wake up easier and be more responsive. The neurosurgeons did say they are happy with how he is responding neurologically (pupils reacting good, tracking with his eyes when awake, and squeezing their hand).
One of his best friends from high school, Jake, asked us last night if we get to call him the 'Booginator' now that he'll probably have a metal head. Hmmm...we'll have to see how he likes that. LOL!
~Betsy
Day 12 Morning Update
Scott had another good night. They have him off all his sedation right now but he still has a lot in his system, so it takes a while for him to respond. The surgeons did their rounds this morning and said he is doing very well neurologically. He's where they expect him to be, is eyes react normally and he is trying to move his toes and hand. They did another breathing test in the early morning for about 45 minutes and he did well, even though he still struggles a little bit. Since he still has a little temp, the doctor said that can make him slow to wake up also. They will continue to test for vasospasms everyday and I'm not sure if he has a CT scheduled for today.
We are all just looking forward to when he's more awake and then we can focus on the next step of treatment. Come on Scott....you're doing great!!!
We are all just looking forward to when he's more awake and then we can focus on the next step of treatment. Come on Scott....you're doing great!!!
Sunday, April 18, 2010
Double CT Day
Again, today was a pretty good day. He was more responsive this morning when they brought his sedation levels down. His heart rate is staying down when it needs to and his pupils are reacting normally. He wasn't as responsive this evening, so they did another CT scan. Doctor said it looked good and that the slow responding is most likely due to the sedatives still. He's got a slight temp again this evening, so I'll let you know how that is doing in the morning. Overall...much better than he was a couple days ago. We'll take that and go with it!
And how about his little kiddos? Well, they spent the night here on Friday and we got to go to the park Saturday and again today. Coby is obviously a little confused and missing his daddy. He wanted to sit on Farmer's lap quite a bit and it kindof makes you tear up to watch, knowing how much he needs that. If miss Cora was confused, you wouldn't have known it. She was her usual little self and had a great time playing at the park and with Jack. Here are a couple pictures of them while I was with them. :)
~Betsy
The many thoughts of Diane
Ok so first which is really last.... I got to the end of rereading this and realized I want this part of the story 1st not last lol
I can not begin to describe the Awesomeness of this Hospital! They truly are here for the whole thing. I know Scott is in the best care because every single hospital worker is great! The lady who cleans, asked me how my husband is doing when I was in the hall! She remembered me enough that she could ask even when I was not in the room with him! From Surgeons to Doctors to Nurses to Respiratory Monitors to Ultrasound Techs to the people at the Desk (I know how important they really are cuz I'm one) all who have been many different people. They are all great at taking care of Scott first and yet me as well. From Claudia the Social worker to Andrea the Care Manager to Mark the Chaplin who are all here for me and the family. Wow what a huge relief knowing I have people in the Hospital for me
It's Sunday afternoon & I'm back in 'the room'. I was able to spend the last 24 hours with the kids. We went to spend the night with my grandma in Arlington (where I grew up/Scott & I lived when 1st married, for any who don't know) I took the kids to see 'Diary of a Wimpy Kid' downtown with g-ma, Christina (my older sister) and her boys. It was so great to have them with us. Tanner was a great distraction for Coby. Going to the movies is a very usual thing for our family to do. We love movies and anytime we're in A-Town & Norma's playing a movie we've considered seeing, we go. The prices are amazing, the candy selection is huge and well I worked there all through High School, how can we not go. Cora was very cuddly and had lots of comments on the movie, which was great it kept me from thinking about Scott and how he should be there with us. I did have a few of these thoughts none the less :( It was great to sit & chill with the kids .Then I was able to sleep in between them last night which was a treat in it's self.
We were able to go to church this morning before heading to Besty's for the kids swap. It was really nice to do something normal. Coby sang the songs so well today, which is something Scott has been working with him on during church at home. It was so amazing to hear his voice and know he was reading the words as he sang all because his dad knew it was important. (Coby sticks pretty close to Scott and Cora sticks pretty close to me during sacrament meeting) I had them both laying on my lap most of the meeting playing with their hair. What a sweet experience to have them close & quit while hearing about how keeping the commandments of God brings blessing and makes us happy.
I agree! I'm sure many people have been asking "How could this happen to Scott?" "Why him" "He doesn't deserve this!"
All I can say is, I see the blessings & the answers to prayers that this has brought in our lives already! It's too difficult and way to personal for me to share, but know that yes this experience has answered some of his specific prayers... just not in a way he or I would have expected!
Scott and I were planning to go to the temple this month and as we were in the ambulance driving over my mind was racing from one thought & prayer to the next. I could not help but pray as hard as I could for the Lord to allow me to keep Scott. I kept thinking what will I do if we loose him, and automatically thought I will not! I can't raise our children without him. They have to learn things from him that I can't teach them. My prayers turned to the Lord and I remembered that we were planning to go soon. I automatically thought, sweet I will be able to go to the temple more often with being so close to Bellevue. As we got closer to it, if you don't know you can see the Latter Day Saints Temple from I-90 really well at night, I got anxious to see it. I needed it's calming feeling. Once I saw the temple I got the overwhelming feeling to go ASAP. So I made a plan to go Saturday morning. As we have learned in this 'room' time flies very fast in here. I was finally ready to go & he was agitated when I went in for a look before I left. I started thinking, it's more important for me to stay here with him in this state. I can go another time, even later today. But I got the distinct feeling that I needed to go now. So I turned to mom & said get me to the temple. We were able to go and have a wonderful experience there. But once I was ready to go, I was ready to go and panic set in. For the 1st time ever I got out of the temple as fast as I could for an update. I'm sure Besty was a bit shocked to hear my voice with such panic as I asked how things were. They were as good as could be expected. Ah finally back in 'the room' with Honey. I know I did what the Lord wanted and I believe Scott was blessed by my obedience to the commandments.
As we all know the week was full of ups and downs. I remember going to bed on Wednesday thinking it is going to be so long before things turn around and he has good days. Then Thursday hits. It was a very scary morning for me. I heard the word LP and thought about the show House. It always seems like a huge deal if you're to the point of an LP. I automatically called my mom and told her she had to go to the temple as soon as she could that morning! (she is in Utah visiting my sister Caroline. She has had the tickets to go for months & I told her I needed to to still go, mainly it was so Care had some family. I know always looking out for others. But I also needed my mom where she could be free to go as I needed her to.) She told me the night before that Thursday was sitting to work on genealogy day. I heard LP & thought sorry moma genealogy day is turning into temple day. When I told I needed her to go she had not hesitation she walked the mile or so to get there and actually spent most of the day serving the Lord. Later she told me, "I know the Lord will bless Scott to make it through this experience." I can't express the gratitude I have for my Heavenly Father for blessing me with the one thing I need at this time... My Loving Husband to stay with me!
I know that the time of it was a blessing as well. I can't express how many things have fallen into place where the person I needed hep from was able to help so easily & yet if this happened even a week later that would have been much more difficult.
I'm beside myself to think that I have also been blessed by so many people in our life with help, support and prayer. I can't express the feeling in my heart for each of you who have supported our family in this trail. To all those who follow this blog. Wow I am touched that you care enough to see how we're doing.
I have a few thoughts I'd like to share.... I know I know after that book, she still has more to say? Why of course. Ask anyone who has had the pleasure of reading an incident report I've written at the Y how much she can say :)
I'm not sure how many know, but I had to stay in 'the room' when they did the LP. I was so scared. They had to sit him up because he was not stable enough for laying down. It was not an easy thing. Almost 200lbs of sedated weight, it took 4 nurses to get him up. Oh I say I had to stay because, well I had a choice to be in the room and well it was a do you stay & know what was happening or sit in the waiting room with no idea. I had to know, so I had to stay. But staying was not easy. By the way a huge Thank You to Dr. Schubert the Neuro Surgeon/Fellow that did the procedure. He took the time to come tell me it looked much worse than it was ans he took lots of time to explain the whole thing to me afterwards.
I had a little church guide book in my bag that I had to read to keep me distracted. I came across a few phrase that really helped me. I know that although our currant trial is way more obvious than most people have, I'm not oblivious to others having struggles in their lives. And if you're like me they feel huge...until you find yourself sitting in the hospital. So here they are. I know that many who read this do not believe exactly as we do, but I hope that these thought bring you comfort, because it is all I can do after all the many things you have done for us. Even if all you have done is read our postings, you have been a strength to our family.
These are all from 'True to the Faith, a gospel reference" for the Church of Jesus Christ of Latter Day Saints. Wow my English teachers over the years should be happy, I sited a source on an Internet blog lol
Thoughts:
-Adversity will vary, one response should always be constant, your trust in Heavenly Father and Jesus Christ.
-You do what They require even when you desire something else.
- He may allow you to wait so you can continue to learn and grow.
-Find comfort...the Savior understands your trails perfectly. He has experienced your pain, He knows how to help you.
-Your success and happiness, both now and in the eternities, depends largely on your responses to the difficulties of life.
-You may simply need to be patient and faithful.
If you made it to the end of this posting, I congratulate you with my love and gratitude! Diane
I can not begin to describe the Awesomeness of this Hospital! They truly are here for the whole thing. I know Scott is in the best care because every single hospital worker is great! The lady who cleans, asked me how my husband is doing when I was in the hall! She remembered me enough that she could ask even when I was not in the room with him! From Surgeons to Doctors to Nurses to Respiratory Monitors to Ultrasound Techs to the people at the Desk (I know how important they really are cuz I'm one) all who have been many different people. They are all great at taking care of Scott first and yet me as well. From Claudia the Social worker to Andrea the Care Manager to Mark the Chaplin who are all here for me and the family. Wow what a huge relief knowing I have people in the Hospital for me
It's Sunday afternoon & I'm back in 'the room'. I was able to spend the last 24 hours with the kids. We went to spend the night with my grandma in Arlington (where I grew up/Scott & I lived when 1st married, for any who don't know) I took the kids to see 'Diary of a Wimpy Kid' downtown with g-ma, Christina (my older sister) and her boys. It was so great to have them with us. Tanner was a great distraction for Coby. Going to the movies is a very usual thing for our family to do. We love movies and anytime we're in A-Town & Norma's playing a movie we've considered seeing, we go. The prices are amazing, the candy selection is huge and well I worked there all through High School, how can we not go. Cora was very cuddly and had lots of comments on the movie, which was great it kept me from thinking about Scott and how he should be there with us. I did have a few of these thoughts none the less :( It was great to sit & chill with the kids .Then I was able to sleep in between them last night which was a treat in it's self.
We were able to go to church this morning before heading to Besty's for the kids swap. It was really nice to do something normal. Coby sang the songs so well today, which is something Scott has been working with him on during church at home. It was so amazing to hear his voice and know he was reading the words as he sang all because his dad knew it was important. (Coby sticks pretty close to Scott and Cora sticks pretty close to me during sacrament meeting) I had them both laying on my lap most of the meeting playing with their hair. What a sweet experience to have them close & quit while hearing about how keeping the commandments of God brings blessing and makes us happy.
I agree! I'm sure many people have been asking "How could this happen to Scott?" "Why him" "He doesn't deserve this!"
All I can say is, I see the blessings & the answers to prayers that this has brought in our lives already! It's too difficult and way to personal for me to share, but know that yes this experience has answered some of his specific prayers... just not in a way he or I would have expected!
Scott and I were planning to go to the temple this month and as we were in the ambulance driving over my mind was racing from one thought & prayer to the next. I could not help but pray as hard as I could for the Lord to allow me to keep Scott. I kept thinking what will I do if we loose him, and automatically thought I will not! I can't raise our children without him. They have to learn things from him that I can't teach them. My prayers turned to the Lord and I remembered that we were planning to go soon. I automatically thought, sweet I will be able to go to the temple more often with being so close to Bellevue. As we got closer to it, if you don't know you can see the Latter Day Saints Temple from I-90 really well at night, I got anxious to see it. I needed it's calming feeling. Once I saw the temple I got the overwhelming feeling to go ASAP. So I made a plan to go Saturday morning. As we have learned in this 'room' time flies very fast in here. I was finally ready to go & he was agitated when I went in for a look before I left. I started thinking, it's more important for me to stay here with him in this state. I can go another time, even later today. But I got the distinct feeling that I needed to go now. So I turned to mom & said get me to the temple. We were able to go and have a wonderful experience there. But once I was ready to go, I was ready to go and panic set in. For the 1st time ever I got out of the temple as fast as I could for an update. I'm sure Besty was a bit shocked to hear my voice with such panic as I asked how things were. They were as good as could be expected. Ah finally back in 'the room' with Honey. I know I did what the Lord wanted and I believe Scott was blessed by my obedience to the commandments.
As we all know the week was full of ups and downs. I remember going to bed on Wednesday thinking it is going to be so long before things turn around and he has good days. Then Thursday hits. It was a very scary morning for me. I heard the word LP and thought about the show House. It always seems like a huge deal if you're to the point of an LP. I automatically called my mom and told her she had to go to the temple as soon as she could that morning! (she is in Utah visiting my sister Caroline. She has had the tickets to go for months & I told her I needed to to still go, mainly it was so Care had some family. I know always looking out for others. But I also needed my mom where she could be free to go as I needed her to.) She told me the night before that Thursday was sitting to work on genealogy day. I heard LP & thought sorry moma genealogy day is turning into temple day. When I told I needed her to go she had not hesitation she walked the mile or so to get there and actually spent most of the day serving the Lord. Later she told me, "I know the Lord will bless Scott to make it through this experience." I can't express the gratitude I have for my Heavenly Father for blessing me with the one thing I need at this time... My Loving Husband to stay with me!
I know that the time of it was a blessing as well. I can't express how many things have fallen into place where the person I needed hep from was able to help so easily & yet if this happened even a week later that would have been much more difficult.
I'm beside myself to think that I have also been blessed by so many people in our life with help, support and prayer. I can't express the feeling in my heart for each of you who have supported our family in this trail. To all those who follow this blog. Wow I am touched that you care enough to see how we're doing.
I have a few thoughts I'd like to share.... I know I know after that book, she still has more to say? Why of course. Ask anyone who has had the pleasure of reading an incident report I've written at the Y how much she can say :)
I'm not sure how many know, but I had to stay in 'the room' when they did the LP. I was so scared. They had to sit him up because he was not stable enough for laying down. It was not an easy thing. Almost 200lbs of sedated weight, it took 4 nurses to get him up. Oh I say I had to stay because, well I had a choice to be in the room and well it was a do you stay & know what was happening or sit in the waiting room with no idea. I had to know, so I had to stay. But staying was not easy. By the way a huge Thank You to Dr. Schubert the Neuro Surgeon/Fellow that did the procedure. He took the time to come tell me it looked much worse than it was ans he took lots of time to explain the whole thing to me afterwards.
I had a little church guide book in my bag that I had to read to keep me distracted. I came across a few phrase that really helped me. I know that although our currant trial is way more obvious than most people have, I'm not oblivious to others having struggles in their lives. And if you're like me they feel huge...until you find yourself sitting in the hospital. So here they are. I know that many who read this do not believe exactly as we do, but I hope that these thought bring you comfort, because it is all I can do after all the many things you have done for us. Even if all you have done is read our postings, you have been a strength to our family.
These are all from 'True to the Faith, a gospel reference" for the Church of Jesus Christ of Latter Day Saints. Wow my English teachers over the years should be happy, I sited a source on an Internet blog lol
Thoughts:
-Adversity will vary, one response should always be constant, your trust in Heavenly Father and Jesus Christ.
-You do what They require even when you desire something else.
- He may allow you to wait so you can continue to learn and grow.
-Find comfort...the Savior understands your trails perfectly. He has experienced your pain, He knows how to help you.
-Your success and happiness, both now and in the eternities, depends largely on your responses to the difficulties of life.
-You may simply need to be patient and faithful.
If you made it to the end of this posting, I congratulate you with my love and gratitude! Diane
Day 11 Morning Update
Last night went really well. They did a 'breathing' test for him around 4 am. This is where they see how well he breaths on his own...he did this for 1 hour. :) This is probably the first of many tests like this to see how he does. He was awake more last night and was able to follow the nurses finger with his eyes. They also asked him a series of yes and no questions that he was able to shake his head to. One question they asked him was if he was a pilot or not. He looked at them like they were a little crazy. Then they asked him if he painted cars and he nodded his head. Way to go!
He was having a CT scan this morning so I'll post results of that later today.
Nurse Jen said that there will probably be many days where I won't have anything to post...pretty boring and low key days. That's fine by all of us. Beats the alternative of posting not so positive things.
~Betsy
He was having a CT scan this morning so I'll post results of that later today.
Nurse Jen said that there will probably be many days where I won't have anything to post...pretty boring and low key days. That's fine by all of us. Beats the alternative of posting not so positive things.
~Betsy
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