It's been a long time since I saw "Sleepless in Seattle," but I do remember that the premise was much more pleasant than this "sleeplessness."
A doctor asked me how her night was. I had a one word answer - "terrible." She could not get comfortable. We had a pharmacy of medications in her starting at 10 pm, but it didn't scratch the surface. She would be in one position and then ask literally seconds later to be "turned over." She couldn't get into her preferred sleeping position - on her stomach as that was the worst.
So I spent the night asking God for ways I could help her. I tried a number of things, but nothing worked for very long. This morning she received some baclofen and oxycodone and viola! that calmed her for an hour. Unfortunately, it didn't last long, but she's been more comfortable this morning than the entire night last night.
So today will be the day to advocate for increased medication to make her more comfortable. She has a number of days left in the process and she can't afford to be "sleepless in St. Paul" for that many days in row.
This is the closest thing I've experienced to what God went through when Christ was sacrificed on the cross. Watching your child suffer like that causes you to ask a lot of hard questions. I truly believe that God is in control of everything, but I don't understand why it's necessary for a lot of the suffering in this world. Oh I know there are good theological answers for all of that, but when you live it, NONE of those words are helpful.
We continue to cry out to God for mercy and comfort and strength for our Dolly.
If you can call it a "bright spot," we moved to a much larger room. The space is definitely nice, but more importantly, we can get afternoon sunshine - if and when it actually shines.
Showing posts with label Baclofen. Show all posts
Showing posts with label Baclofen. Show all posts
Monday, November 4, 2013
Thursday, October 31, 2013
Happy Halloween!
The hospital staff does a good job of making things fun when a holiday rolls around. They had "trick or treat" stations throughout the hospital. Vicki was left in charge of the 7 West candy.
Happy Halloween!
Wednesday, October 30, 2013
Up and Down and Upside Down
Today has been a day of up and down - literally. We started the day with the goal of being up in the bed and then up in the chair. After being up in the bed at 30 degrees, there was some drainage around the back incision. So Vicki ended up like this:
You can see a smile on her face, but trust me, she's not always this happy about it.
In addition to being flat, Vicki has seen PT, a therapy dog, an infectious disease doctor, ATD (the chair people), Music Therapy and Rec Therapy.
PT said, that her hips may be "locked" at 65 degrees due to bone changes and not muscle issues. She suggested we see the orthopedic doctor to get more information.
The therapy dog was a poodle and had been introduced to Hajik before. They said "hi" again, then the poodle talked with Vicki for 3 minutes and left.
Infectious disease said that "one line" of a culture had grown something in her Cerebral Spinal Fluid (CSF) when it was last taken. One belief is that it was a contaminate in the lab. There are no other signs of infection so it is the leading theory. We need to have another check of the CSF in the near future.
ATD came up and adjusted the back of Vicki's chair by 10 degrees. It's more open now. Think reclining slightly.
Music Therapy kept Vicki entertained long enough for me to talk with another professional.
Rec Therapy brought some costume options for Vicki for tomorrow. Guess what she chose to be? a) A princess? b) A fairy? c) A witch? or d) A doctor? Final answer? d) a doctor.
I'm certain she will try to tell everyone what to do tomorrow when she becomes a doctor. She already does that, but doesn't wear the lab coat.
The day has been full, but as I said, has been up and down. We can not go home until she stops leaking. So I told her to "dry up."
Right now, we are waiting for the surgeon to come in and give us an opinion about the leakage.
Epilogue: We saw the surgeon. She determined that the fluid was indeed CSF and leaking. That's not a good thing. She said at one point, "Let me think about this." She was considering surgery, or novocaine and some additional stitches. When she left the room to think, I was wondering to myself, "Do they ever use glue in a situation like this?" She came back in and said, I'm going to use "Dermabond" - a glue. That felt like a good confirmation to me.
The "Upsidedown" side to all of this is as follows:
She has to be in "reverse trendelenburg" position until at least tomorrow. We could be looking at 3 more days of being flat. She also has to hold off on a feeding for now so we don't add pressure. She will be getting a medicine to slow the reproduction of spinal fluid. The idea is that by "turning off the faucet" of the spinal fluid, there will be less pressure and hopefully not make it worse. The surgeon's last words to us were, "It's not a big deal now. Let's keep it from becoming one."
In addition to being flat, Vicki has seen PT, a therapy dog, an infectious disease doctor, ATD (the chair people), Music Therapy and Rec Therapy.
PT said, that her hips may be "locked" at 65 degrees due to bone changes and not muscle issues. She suggested we see the orthopedic doctor to get more information.
The therapy dog was a poodle and had been introduced to Hajik before. They said "hi" again, then the poodle talked with Vicki for 3 minutes and left.
Infectious disease said that "one line" of a culture had grown something in her Cerebral Spinal Fluid (CSF) when it was last taken. One belief is that it was a contaminate in the lab. There are no other signs of infection so it is the leading theory. We need to have another check of the CSF in the near future.
ATD came up and adjusted the back of Vicki's chair by 10 degrees. It's more open now. Think reclining slightly.
Music Therapy kept Vicki entertained long enough for me to talk with another professional.
Rec Therapy brought some costume options for Vicki for tomorrow. Guess what she chose to be? a) A princess? b) A fairy? c) A witch? or d) A doctor? Final answer? d) a doctor.
I'm certain she will try to tell everyone what to do tomorrow when she becomes a doctor. She already does that, but doesn't wear the lab coat.
The day has been full, but as I said, has been up and down. We can not go home until she stops leaking. So I told her to "dry up."
Right now, we are waiting for the surgeon to come in and give us an opinion about the leakage.
Epilogue: We saw the surgeon. She determined that the fluid was indeed CSF and leaking. That's not a good thing. She said at one point, "Let me think about this." She was considering surgery, or novocaine and some additional stitches. When she left the room to think, I was wondering to myself, "Do they ever use glue in a situation like this?" She came back in and said, I'm going to use "Dermabond" - a glue. That felt like a good confirmation to me.
The "Upsidedown" side to all of this is as follows:
Tuesday, October 29, 2013
Movin on Down :(
In every hospital stay there is the 'setback' or 'hold up' or some other words that describe forward progress stopping and backward progress starting. Today was that day.
It started well enough with one hour in her chair in the morning! But the afternoon stint was only 45 minutes. After that there was some very slight drainage from her back incision. It doesn't seem like a big deal when it is less than a dimes worth, but when you consider it might be spinal fluid, then it could be a big deal.
She went from having the chance to be in her chair and to eat some things by mouth to being flat for the afternoon/evening and nothing by mouth.
It's disheartening, but it's not life-threatening. So we wait and try again tomorrow.
It started well enough with one hour in her chair in the morning! But the afternoon stint was only 45 minutes. After that there was some very slight drainage from her back incision. It doesn't seem like a big deal when it is less than a dimes worth, but when you consider it might be spinal fluid, then it could be a big deal.
She went from having the chance to be in her chair and to eat some things by mouth to being flat for the afternoon/evening and nothing by mouth.
It's disheartening, but it's not life-threatening. So we wait and try again tomorrow.
Monday, October 28, 2013
Movin On Up!
Vicki has been cleared for take off! No, she can't go home just yet, but she can have the head of her bed raised! She started with 10 degrees and will move to 20 by this afternoon. See how she is:
It's not a big change, but it keeps her happy and it's foreword, or should I say upward progress.
It's not a big change, but it keeps her happy and it's foreword, or should I say upward progress.
Sunday, October 27, 2013
Back in the Saddle Again
I suppose you think Vicki is sitting up in her chair by the title. Well not quite, she was watching a horse movie when I got back so the title seemed fitting.
When I arrived, Vicki was very calm and Sarah reported she had an OK night and a good day. I suspect the calm is partially due to the pain meds she's on. I've watched her come out of surgery before and appear as if some miracle of calm had overtaken her only to see a few days later that she was not quite as calm.
I can tell that her tone is significantly better and that is very, very good news. The sad part is I don't know how long she's really been suffering.
We are anxiously awaiting 7pm. If the back incision is dry at that time, then she can have her head elevated slightly. We will progress with increased height as she tolerates it. I guess you could call it, "movin on up."
At home this morning, I realized how truly blessed we are. When we hit these "bumps in the road," we receive an a great amount of support. Meals have been provided, visitors have stopped by, prayers have been said, and PCA's have stepped up to support us in ways that are outside of the job description.
I've said this before, but it bears repeating - I believe that when one member of God's family goes into crisis and others respond, that is what God means when he talks about the fact that we are the 'body of Christ.' We are being taken care of by others in the body of Christ during this time. Later on, when we are better, we will have the chance to strengthen and support others.
Scott
When I arrived, Vicki was very calm and Sarah reported she had an OK night and a good day. I suspect the calm is partially due to the pain meds she's on. I've watched her come out of surgery before and appear as if some miracle of calm had overtaken her only to see a few days later that she was not quite as calm.
I can tell that her tone is significantly better and that is very, very good news. The sad part is I don't know how long she's really been suffering.
We are anxiously awaiting 7pm. If the back incision is dry at that time, then she can have her head elevated slightly. We will progress with increased height as she tolerates it. I guess you could call it, "movin on up."
At home this morning, I realized how truly blessed we are. When we hit these "bumps in the road," we receive an a great amount of support. Meals have been provided, visitors have stopped by, prayers have been said, and PCA's have stepped up to support us in ways that are outside of the job description.
I've said this before, but it bears repeating - I believe that when one member of God's family goes into crisis and others respond, that is what God means when he talks about the fact that we are the 'body of Christ.' We are being taken care of by others in the body of Christ during this time. Later on, when we are better, we will have the chance to strengthen and support others.
Scott
Friday, October 25, 2013
A Success
Vicki was amazingly calm during the time they came to get her, while she was in Pre-Op and up to that last moment of consciousness. The "secret" was finally revealed to her about 40 minutes before surgery. That in and of itself is a miracle and a success! Vicki usually sniffs out these things, but was none the wiser even with the man trying to place an IV said, "So you're headed to surgery..." when he couldn't get an IV started in her room! I quickly replied, "Not soon! You must be thinking of a different patient." Then he remembered his blunder and said "Oh, my mistake, I must be confused."
She was asking questions and simply lying on the gurney throughout the Pre-Op time even after the big "surgery" word was revealed. I think part of her was relieved to know she was going to get some help.
I was able to accompany Vicki back to the OR and watch her "drift off" to sleep under the anesthesia. Drift is not a good word for this kind of sleep. It is more 'forced on you' through the medications. Although she usually fights it, she did so much better this time. Partly because they gave her medicine in the IV and partly because of your prayers. She was able to hear her favorite verse as I whispered "God has said, 'Never will I leave you, Never will I forsake you.'"
When I got back to the Pre-Op room to get Laura and Hajik, he was visibly nervous. He worries when his girl isn't in sight. I had to tell him several times that she would be OK before it sunk in.
One of the things about having a child in the hospital that's difficult is the rest of life keeps on going. Work, kids practices, school and activities all continue as if oblivious to what's happening to the one child. After giving Laura a tour of all the places you can go in the hospital, I had to leave to meet two clients for evening meetings. Along the way, I called the PCA's at home to make sure the others were still OK. I met my clients, and then headed up to my brother-in-laws to exchange my van for his truck so I can head up to my parents this weekend to help them move. Yep, life keeps going.
Laura reported that the surgery went well and that Vicki has a new pump and catheter. Both are the latest and greatest so she should have fewer problems in the future. The surgeon remarked that it was a bit of work to get the catheter placed due to Vicki's spinal fusion and all of the extra bone in the way.
Vicki will now be flat for 3 days and then in the hospital for 2-4 more days after that - minimum.
We are truly grateful to be circled by your love, prayers, kind words, visits, food etc. God IS Good.
Scott
She was asking questions and simply lying on the gurney throughout the Pre-Op time even after the big "surgery" word was revealed. I think part of her was relieved to know she was going to get some help.
I was able to accompany Vicki back to the OR and watch her "drift off" to sleep under the anesthesia. Drift is not a good word for this kind of sleep. It is more 'forced on you' through the medications. Although she usually fights it, she did so much better this time. Partly because they gave her medicine in the IV and partly because of your prayers. She was able to hear her favorite verse as I whispered "God has said, 'Never will I leave you, Never will I forsake you.'"
When I got back to the Pre-Op room to get Laura and Hajik, he was visibly nervous. He worries when his girl isn't in sight. I had to tell him several times that she would be OK before it sunk in.
One of the things about having a child in the hospital that's difficult is the rest of life keeps on going. Work, kids practices, school and activities all continue as if oblivious to what's happening to the one child. After giving Laura a tour of all the places you can go in the hospital, I had to leave to meet two clients for evening meetings. Along the way, I called the PCA's at home to make sure the others were still OK. I met my clients, and then headed up to my brother-in-laws to exchange my van for his truck so I can head up to my parents this weekend to help them move. Yep, life keeps going.
Laura reported that the surgery went well and that Vicki has a new pump and catheter. Both are the latest and greatest so she should have fewer problems in the future. The surgeon remarked that it was a bit of work to get the catheter placed due to Vicki's spinal fusion and all of the extra bone in the way.
Vicki will now be flat for 3 days and then in the hospital for 2-4 more days after that - minimum.
We are truly grateful to be circled by your love, prayers, kind words, visits, food etc. God IS Good.
Scott
Thursday, October 24, 2013
Keeping Secrets
Have you ever had to keep a secret? Have you ever had to keep a secret while making sure you don't lie? Have you ever had to keep a secret with 20-30 other people that come wandering into your life? Well, I've been practicing the art of 'secret keeping' from Vicki for some time now and I'm getting pretty good at it. You see, telling her about any big anticipated change is a BAD idea. Her anxiety overwhelms her and then we all pay for it with lots of wailing and whining.
The most current secret is her upcoming surgery - today, Thursday, at 2pm. (Whoops I just told you! That's OK, Vicki won't read this) The challenge is to not let the nurses, aides, doctors, etc alter her routine so much that she figures out something is up. We've asked all of the staff to alert those following them about our little secret and they've been very helpful so far. I've still made a bee-line for the door whenever a new professional pops in that seems like they don't know the secret so we can talk out of her hearing. As of 6am, it's still a secret to her.
Unfortunately, she didn't sleep as well, because we really did have to alter her routine. She had to be fed early in the morning because after 6am, she can't eat. So she was up a few times with nursing care. She's currently sitting up in bed yelling "I'm tired" instead of just relaxing and trying to rest.
Our anticipated stay is currently 5-7 days after surgery. It could be longer. It will not likely be shorter.
Soon and very soon, someone will have to come into the room that needs to do something that will 'spill the beans.' In the mean time, I am practicing what every NSA staff member should - keeping it under wraps, it's a secret!
The most current secret is her upcoming surgery - today, Thursday, at 2pm. (Whoops I just told you! That's OK, Vicki won't read this) The challenge is to not let the nurses, aides, doctors, etc alter her routine so much that she figures out something is up. We've asked all of the staff to alert those following them about our little secret and they've been very helpful so far. I've still made a bee-line for the door whenever a new professional pops in that seems like they don't know the secret so we can talk out of her hearing. As of 6am, it's still a secret to her.
Unfortunately, she didn't sleep as well, because we really did have to alter her routine. She had to be fed early in the morning because after 6am, she can't eat. So she was up a few times with nursing care. She's currently sitting up in bed yelling "I'm tired" instead of just relaxing and trying to rest.
Our anticipated stay is currently 5-7 days after surgery. It could be longer. It will not likely be shorter.
Soon and very soon, someone will have to come into the room that needs to do something that will 'spill the beans.' In the mean time, I am practicing what every NSA staff member should - keeping it under wraps, it's a secret!
Wednesday, October 23, 2013
Roller Coaster Ride
NOTE: if you read this and then call, if Vicki is on the line, please don't mention the surgery. Thx.
Yesterday (Tuesday) was a bit of a roller coaster ride. Vicki's pump dosing was altered with the hope that by doing so we could put off surgery for a period of time. Unfortunately that left us with a lot of unknowns. Would it work and make her tone better? Would it worsen a suspected micro-fracture in the catheter? If it did make it worse, would it be a slow change or a "blow out" sometime in the future?
At the very same time, the surgeon was indicating via phone that she wanted Vicki to have surgery soon. At one point we thought the surgery was going to be today (Wednesday).
Those two things (changes in the pump and surgeon wanting to change the pump) left us with a decision. Do we wait out the changes and see what they do for Vicki or do we push ahead with surgery? We were graciously given a lot of input by the first doctor so we could have as much time as possible to consider the options when we met with the surgeon. After phone calls to Laura, some time on my knees (literally) and some additional time thinking, I felt like surgery was a good option.
I spent the evening waiting for the surgeon, but we never saw her so I went to bed wondering. I told God that the decision has to be in His hands, because I wasn't being given the options. I gave up worrying about it. We slept "well." (The definition of "well" in the hospital is that you get about 2 hours at a time before something wakes you up.)
This morning (Wed) we got up and had no news. However, the surgeon was there very early and she said, "She's tight. Let's do it tomorrow (Thursday)." So the whole option thing wasn't really an option. I doubt that I would have argued with her because she was very confident it needed to be done right away.
I don't have a time yet, but the surgeon was doing her prep to find a time for surgery tomorrow (Thursday).
We are in a good place and I feel like we're on the right path.
Thanks for the prayers, calls, visits and support.
For those of you who are interested in a more detailed explanation of the pump aspect - Vicki's pump is an infusion pump. It has a catheter connected to it that extends from the pump and is anchored in her spine area so the medicine can be delivered right to the spinal fluid. The pump needs replacing every 3-5 years depending on battery life. The catheter only needs replacing if there is an issue.
Vicki's muscle tone has been getting slowly worse for some time. It has been getting dramatically worse in the last 3-4 weeks. So much worse that she can't even sit in her chair for very long! Not a good thing, since she practically lives in it.
The increased tone can be due to a number of things: infections, illness, or something wrong with the pump/catheter. After investigating practically everything, the catheter is believed to have a "micro-fracture." This allows the medicine to seep into her body wherever the crack is. Not a super big deal if the crack stays small and she gets the rest of the medicine, but as you've read, that's not the case. The pump will be replaced because it will have to be replaced within a year anyway. The catheter is likely to be replaced. If it is, the recovery will be longer.
Yesterday (Tuesday) was a bit of a roller coaster ride. Vicki's pump dosing was altered with the hope that by doing so we could put off surgery for a period of time. Unfortunately that left us with a lot of unknowns. Would it work and make her tone better? Would it worsen a suspected micro-fracture in the catheter? If it did make it worse, would it be a slow change or a "blow out" sometime in the future?
At the very same time, the surgeon was indicating via phone that she wanted Vicki to have surgery soon. At one point we thought the surgery was going to be today (Wednesday).
Those two things (changes in the pump and surgeon wanting to change the pump) left us with a decision. Do we wait out the changes and see what they do for Vicki or do we push ahead with surgery? We were graciously given a lot of input by the first doctor so we could have as much time as possible to consider the options when we met with the surgeon. After phone calls to Laura, some time on my knees (literally) and some additional time thinking, I felt like surgery was a good option.
I spent the evening waiting for the surgeon, but we never saw her so I went to bed wondering. I told God that the decision has to be in His hands, because I wasn't being given the options. I gave up worrying about it. We slept "well." (The definition of "well" in the hospital is that you get about 2 hours at a time before something wakes you up.)
This morning (Wed) we got up and had no news. However, the surgeon was there very early and she said, "She's tight. Let's do it tomorrow (Thursday)." So the whole option thing wasn't really an option. I doubt that I would have argued with her because she was very confident it needed to be done right away.
I don't have a time yet, but the surgeon was doing her prep to find a time for surgery tomorrow (Thursday).
We are in a good place and I feel like we're on the right path.
Thanks for the prayers, calls, visits and support.
For those of you who are interested in a more detailed explanation of the pump aspect - Vicki's pump is an infusion pump. It has a catheter connected to it that extends from the pump and is anchored in her spine area so the medicine can be delivered right to the spinal fluid. The pump needs replacing every 3-5 years depending on battery life. The catheter only needs replacing if there is an issue.
Vicki's muscle tone has been getting slowly worse for some time. It has been getting dramatically worse in the last 3-4 weeks. So much worse that she can't even sit in her chair for very long! Not a good thing, since she practically lives in it.
The increased tone can be due to a number of things: infections, illness, or something wrong with the pump/catheter. After investigating practically everything, the catheter is believed to have a "micro-fracture." This allows the medicine to seep into her body wherever the crack is. Not a super big deal if the crack stays small and she gets the rest of the medicine, but as you've read, that's not the case. The pump will be replaced because it will have to be replaced within a year anyway. The catheter is likely to be replaced. If it is, the recovery will be longer.
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