Judi is continuing to struggle with the ventilator, which is puzzling the doctors. They said it is not neurological, which is a relief. Still, we are a little frustrated that she is having so much trouble. This may not seem like that big of a deal, but it is holding her back in her recovery, because she gets completely focused on the ventilator and can't get past it. (Much like when she was at MCG the first time around.)
Fortunately, she was approved to not have to wear her back brace in bed anymore, which is a huge relief for us. Putting the brace on is a big task, and it causes enough discomfort sometimes that it defeats the purpose of sitting up in bed. We are not having as much luck getting the neck brace cleared, but you can't win them all, I guess.
We are a little concerned right now with the site of her craniotomy. Since the installation of the drain, the skin has really drawn in. The neurosurgeon is considering putting her bone flap back soon, which would be another good thing for her, we think. While there are some health advantages to having it out, it will be safer for her when it's back in.
Despite the apparent doom and gloom, she is showing some progress. The surgery set her back a bit, but she's starting moving her hands and feet around again. So, as always, we are trying to take things one day at a time.
Thursday, July 30, 2009
Sunday, July 26, 2009
Judi's surgery Friday went very well. The drain is 'perfectly placed,' to quote one of the neurosurgeons, and seems to be performing its job. We've peeked under her bandages and were startled by how different her head looks. This led to some speculation that she might have been dealing with some of this fluid buildup for quite a while. The doctors agreed that she might have.
I bring this up because one of the issues that arises from hydrocephalus (fluid building up in the head) is that it can negatively affect cognition. We're hoping that she will come back better than before when she's fully recovered.
Right now she is still pretty tired and probably very confused. The doctors had to paralyze her for part of the surgery, as well as reopen her trach and put her back on the ventilator. We think she is really focused on the ventilator again and probably wondering why in the world she's attached to it again after being without it for so long. Also, we were laughing a little to think that for the last few weeks we've been telling her to breathe through her nose and mouth, and now she can't because of the vent. They are weaning her back off it again, though, and she should be back on her own soon.
So that's where we are right now. We're not sure what will happen in the next few days - if she will go back to Walton or go out onto the floor or what. We will keep you posted. Thanks for your prayers and support!
I bring this up because one of the issues that arises from hydrocephalus (fluid building up in the head) is that it can negatively affect cognition. We're hoping that she will come back better than before when she's fully recovered.
Right now she is still pretty tired and probably very confused. The doctors had to paralyze her for part of the surgery, as well as reopen her trach and put her back on the ventilator. We think she is really focused on the ventilator again and probably wondering why in the world she's attached to it again after being without it for so long. Also, we were laughing a little to think that for the last few weeks we've been telling her to breathe through her nose and mouth, and now she can't because of the vent. They are weaning her back off it again, though, and she should be back on her own soon.
So that's where we are right now. We're not sure what will happen in the next few days - if she will go back to Walton or go out onto the floor or what. We will keep you posted. Thanks for your prayers and support!
Thursday, July 23, 2009
A Bump In The Road
Well, they told us we'd have those setbacks, and so we have. Judi was readmitted to the hospital yesterday due to swelling in her head. Steve noticed the swelling and asked for a consult, and the decision was made quickly to take her to MCG to find out what was going on.
The CT scan showed significant hydrocephalus - which is fluid on the brain. This happens when cerebrospinal fluid is not reabsorbed into the brain, and instead collects in the head. Because her bone flap is still out from her craniotomy, there is plenty of room right now. For you and I, this would be a serious crisis. For her, it's still a big deal but she has the room to swell.
She is currently in the Neuro ICU back at MCG and will be going into surgery tomorrow morning at 11:00. That's hospital time, of course, so it could be 11:00 or it could be 4:00, so who knows. One of the neurosurgeons who saw her when she first had her accident will be performing the procedure. He will be installing a shunt, which is essentially a drain that vents internally. It will run under the skin, from the head down into the abdominal cavity where the fluid can be reabsorbed.
We are hopeful that this is just a minor bump in the road, and that she can get back to rehab next week. Please keep her in your thoughts tomorrow.
The CT scan showed significant hydrocephalus - which is fluid on the brain. This happens when cerebrospinal fluid is not reabsorbed into the brain, and instead collects in the head. Because her bone flap is still out from her craniotomy, there is plenty of room right now. For you and I, this would be a serious crisis. For her, it's still a big deal but she has the room to swell.
She is currently in the Neuro ICU back at MCG and will be going into surgery tomorrow morning at 11:00. That's hospital time, of course, so it could be 11:00 or it could be 4:00, so who knows. One of the neurosurgeons who saw her when she first had her accident will be performing the procedure. He will be installing a shunt, which is essentially a drain that vents internally. It will run under the skin, from the head down into the abdominal cavity where the fluid can be reabsorbed.
We are hopeful that this is just a minor bump in the road, and that she can get back to rehab next week. Please keep her in your thoughts tomorrow.
Friday, July 17, 2009
More New Places and New Faces
Well, after some calling around and more deliberation, we ended up taking Judi to Walton. Most of the recommended nursing facilities would not accept Judi with a trach, which made us a little leery about them being able to deal with her other issues. Though she is not ready for the full program at Walton, they are more experienced at dealing with complications like her back brace or helmet. They can give her the appropriate care and help her work up to the full therapy. (Hopefully.)
Judi moved to Walton on Tuesday. She had been displaying a low-grade fever over the last few days at Select, and some tests Friday confirmed that she has developed pneumonia. Her lungs sound clear, so hopefully the antibiotics will knock it out without causing her any major issues. She seems to be feeling a lot better already, but best to be safe. Send some healing thoughts her way, and hopefully she can get through it quickly and focus on her therapy.
Judi moved to Walton on Tuesday. She had been displaying a low-grade fever over the last few days at Select, and some tests Friday confirmed that she has developed pneumonia. Her lungs sound clear, so hopefully the antibiotics will knock it out without causing her any major issues. She seems to be feeling a lot better already, but best to be safe. Send some healing thoughts her way, and hopefully she can get through it quickly and focus on her therapy.
The environment here is another step in the right direction for healing. Most of the nursing visits into the room are visual checks, rather than poking and prodding every couple of hours. There's not a lot of hospital noise, and she's been able to wear some normal clothes finally. All those little things add up after a while! Today, she got to go on a ride around the hospital - even outside in the sun - in a wheelchair. She was very alert and seemed to enjoy looking at the fish in the lobby. Now she's resting up for occupational therapy in a little while.
So we're headed in the right direction. There should be a lot more happening next week, since we came here right on the cusp of the weekend. Hopefully we'll have some exciting news to post soon.
Saturday, July 11, 2009
A Change of Plans
We have received some messages asking if Judi has made it to Shepherd and how she is doing there. Unfortunately, a great number of things have changed since our good news was posted, and were changing right up through yesterday afternoon.
Because of where Judi is on the cognitive scale, she is deemed to be unprepared for the level of rehabilitation at an acute rehab facility like Shepherd or Walton. We believe she is very close, but there is a big delta between "not ready" and "ready." After a lot of deliberation, we have come to realize in our own hearts that she just isn't ready. We very badly wanted her to be - wanted her to head right up to Atlanta and have them work their miracles. But the bottom line is that she is not consistently aware enough to handle the strenous therapy she would receive in an acute rehab facility.
Unfortunately (or not, depending on your view), she also cannot continue to stay at the hospital. With the level of care she still needs, we are not able to safely care for her at home. We are currently looking for a skilled nursing facility for her to get strong enough to go to Shepherd. Some of the ones we have been recommended are Kentwood, Westwood, and Windemere. If anyone has experience with these places or has any contacts there, please comment or email Steve at swilk@knology.net.
So, it's been a disheartening week on that front. We had a lot of hope pinned on that little journey west to Atlanta. But going now would probably have set everyone up for failure. Better to wait a little longer until she is going to have the best chances for success. Judi herself is doing great. She wears the trach cap for most of the day now, though it is opened up at night. She is getting close to having the thing taken out entirely. She is really vocalizing now and testing out those tired vocal cords. And she has been increasingly aware and responsive over the last week. So her recovery is continuing, even if our hearts and hopes are a little worn right now.
Thanks for your continued concern and prayers, and let us know what you know about those places. :)
Because of where Judi is on the cognitive scale, she is deemed to be unprepared for the level of rehabilitation at an acute rehab facility like Shepherd or Walton. We believe she is very close, but there is a big delta between "not ready" and "ready." After a lot of deliberation, we have come to realize in our own hearts that she just isn't ready. We very badly wanted her to be - wanted her to head right up to Atlanta and have them work their miracles. But the bottom line is that she is not consistently aware enough to handle the strenous therapy she would receive in an acute rehab facility.
Unfortunately (or not, depending on your view), she also cannot continue to stay at the hospital. With the level of care she still needs, we are not able to safely care for her at home. We are currently looking for a skilled nursing facility for her to get strong enough to go to Shepherd. Some of the ones we have been recommended are Kentwood, Westwood, and Windemere. If anyone has experience with these places or has any contacts there, please comment or email Steve at swilk@knology.net.
So, it's been a disheartening week on that front. We had a lot of hope pinned on that little journey west to Atlanta. But going now would probably have set everyone up for failure. Better to wait a little longer until she is going to have the best chances for success. Judi herself is doing great. She wears the trach cap for most of the day now, though it is opened up at night. She is getting close to having the thing taken out entirely. She is really vocalizing now and testing out those tired vocal cords. And she has been increasingly aware and responsive over the last week. So her recovery is continuing, even if our hearts and hopes are a little worn right now.
Thanks for your continued concern and prayers, and let us know what you know about those places. :)
Tuesday, July 7, 2009
Good News
Judi will be heading up to Shepherd on Thursday to begin rehabilitation. There was a little doubt today as to whether that would happen sooner rather than later. However, late this afternoon they confirmed that there was a bed for her starting Thursday. We have heard great things about Shepherd and are hoping that this is going to be the start of a whole new era, so to speak.
Also, Judi's tracheostomy was capped off Sunday night, meaning that she is breathing entirely on her own through her upper airway. She was 'snoring' most of yesterday because she was only breathing through her nose for some reason. If she can manage breathing on her own for 72 hours, the doctor will give the go-ahead to pull the trach out. One less piece of hardware to worry about!
This also opens the possibility to start eating again. She will have to do what is called a swallow test, to ensure that she is swallowing and not aspirating. I believe she will be very happy indeed to have something yummy in her mouth after all this time.
Anyway, the next few days may be a little hectic but when she is moved and settled, we will update to let you know how things are up there!
Also, Judi's tracheostomy was capped off Sunday night, meaning that she is breathing entirely on her own through her upper airway. She was 'snoring' most of yesterday because she was only breathing through her nose for some reason. If she can manage breathing on her own for 72 hours, the doctor will give the go-ahead to pull the trach out. One less piece of hardware to worry about!
This also opens the possibility to start eating again. She will have to do what is called a swallow test, to ensure that she is swallowing and not aspirating. I believe she will be very happy indeed to have something yummy in her mouth after all this time.
Anyway, the next few days may be a little hectic but when she is moved and settled, we will update to let you know how things are up there!
Saturday, July 4, 2009
Fingers Crossed
Judi has spent the last week getting stronger, and we're hoping to see a positive result from it this next week. The liasion from Shepherd came to visit on Thursday to assess her. Initially, she did not seem positive, but Steve started coaching Judi and got her responding very well. The liasion seemed very positive when she left. We hope to hear on Monday if they will be able to take her. After a lot of discussion, research, and consideration, we really feel like Shepherd will be her best chance at recovery if they can accept her.
While there are no clear, tangible milestones to describe to you, she is clearly more alert and strong this week than ever before. Her recovery continues in the right direction. There are times when it seems she is just about to snap out of entirely. I
This was a somewhat hard week for all of us. Some of you may know that July 2nd is Steve and Judi's wedding anniversary. The 4th is my (Jessica's) birthday. This was definitely not the circumstances we expected to surround those milestones this year. But it brought into focus the reminder, as ever, of 'what's important?'
So hug those loved ones tight if you're BBQing and watching fireworks tonight. And keep your fingers crossed for us that we are going to hear "Pack up and head to Atlanta" on Monday! :)
While there are no clear, tangible milestones to describe to you, she is clearly more alert and strong this week than ever before. Her recovery continues in the right direction. There are times when it seems she is just about to snap out of entirely. I
This was a somewhat hard week for all of us. Some of you may know that July 2nd is Steve and Judi's wedding anniversary. The 4th is my (Jessica's) birthday. This was definitely not the circumstances we expected to surround those milestones this year. But it brought into focus the reminder, as ever, of 'what's important?'
So hug those loved ones tight if you're BBQing and watching fireworks tonight. And keep your fingers crossed for us that we are going to hear "Pack up and head to Atlanta" on Monday! :)
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