I hope you all can forgive the slow updates lately. We've mostly been having slow days with baby steps, so I find myself often saying "well...what am I going to write?" It's become easier to say progress over the span of a few days now as opposed to a day at a time.
Over the last week, Judi has started working her left side more. She had been strongly favoring her right side, which seems consistent with the location of her brain injury. However, she has started to track visually all the way over to her left side, as well as move that foot and hand more than before. She is also continuing to do well with the Passy-Muir valve. We hope to see her off the trach soon!
I also wanted to thank you all for leaving helpful comments and sending cards to Judi. The comments help us a great deal, and the cards are helping her! We frequently get comments about how her room is so full of love and warmth, with pictures and cards plastered everywhere. You all have helped create a great environment of healing.
Sunday, June 28, 2009
Tuesday, June 23, 2009
Looking Forward
Judi has continued to grow healthier and stronger over the last week. She has really been working her arms and legs, and has developed quite a grip on our hands when she wants to. Her periods of awareness come at about the same frequency and length. During these periods, she obeys commands and really focuses, but we are still looking for this to be the rule rather than the exception.
The big update is that yesterday, her trachea tube was replaced with the smallest size. This means that the next step will be capping it off and having her breathe through her upper airway. Changing it was not fun for anyone involved, but she has tolerated it well and is maintaining her oxygen saturation. She has also been doing well with the Passy-Muir valve. This is the one-way valve that allows her to breathe in through the tracheostomy but forces her to breathe out through her upper airway. It takes time for patients to build up the strength to tolerate it, but she has really been doing well with it, keeping it on all day sometimes.
Right now, we are starting to weigh our different options for rehabilitation facilities. I know that some of you have helped loved ones through a similar injury, so if you have any insight, we would appreciate it. We are considering Walton and Shepherd, and trying to discern the real differences between the two. Thanks in advance for any insight you have there. :)
The big update is that yesterday, her trachea tube was replaced with the smallest size. This means that the next step will be capping it off and having her breathe through her upper airway. Changing it was not fun for anyone involved, but she has tolerated it well and is maintaining her oxygen saturation. She has also been doing well with the Passy-Muir valve. This is the one-way valve that allows her to breathe in through the tracheostomy but forces her to breathe out through her upper airway. It takes time for patients to build up the strength to tolerate it, but she has really been doing well with it, keeping it on all day sometimes.
Right now, we are starting to weigh our different options for rehabilitation facilities. I know that some of you have helped loved ones through a similar injury, so if you have any insight, we would appreciate it. We are considering Walton and Shepherd, and trying to discern the real differences between the two. Thanks in advance for any insight you have there. :)
Tuesday, June 16, 2009
Where We Are
I realized that over the last few weeks, we’ve done mostly sporadic updates. I see Judi almost every day, so it occurred to me that the picture might not be so clear to all the wonderful folks who are sharing our concern and supporting Judi through this struggle. So today I’m going to do a little ‘State of the Union’ post to get everyone up to speed.
Physically, Judi is strong. The swelling in her head from the brain injury has obviously been down for a long time. The incision in her head has healed well. The bone flap is still out, but it is a low-priority issue. Her back incision is also healing nicely.
She is no longer on the ventilator, but she still breathes through the tracheostomy. When she first went off the ventilator, she was receiving extra oxygen through a respirator collar. However, she now goes all day on room air, with just a little extra moisture added to it. She also spends progressively longer periods with the speaking valve, and she is able to maintain oxygen saturation all day with it. She still has some lung secretions that have to be suctioned, but this is an ordeal that only occurs a couple times a day now, instead of every ten minutes. (We’re all VERY happy about that.)
When this first started, I would need both hands and at least one foot to count all the tubes and wires coming off of her. Now, she only has her PEG (feeding tube) and the PIC line in her left arm. She receives various drugs through these tubes and a constant feed of some delightful (sarcasm) looking stuff called Jevity. This week, she should be doing the swallow test. If she passes, she can start having some liquids orally.
She is not on any sedation. She gets pain medication as needed, but she is not on a constant drip. She is receiving several drugs that increase awareness and should help her along in the healing process. She is currently on a drip of antibiotics to take care of some minor infection. Nothing serious – just the natural consequences of being in the hospital for so long.
Neurologically, she has also made a lot of progress. One thing that has been hard to explain has been her level of awareness. She has been ‘awake’ off and on since a few days after the accident. However, at first, she was only awake in the sense that her eyes were open and she wasn’t quite asleep.
Now, she has two main states. One is her ‘chilled’ mode. She is in this state most of the time when she is awake. She watches TV, checks out pictures, tests her toes, and generally pays attention to what interests her. She responds to stimuli, but only for a short time before going back to what she was focusing on before. Dad and I have learned to put on our thick skins, because she will sometimes ‘play possum’ and close her eyes until people go away. We think this is a good healing time for her – she’s relaxed and doing what her brain needs to do for a while.
The other mode is her ‘connected’ mode. These phases usually last from 15-30 minutes. During these times, she responds to commands, listens to what we say, and really focuses on things visually. When she has these times, we try to stimulate her and test what she can do. As I mentioned once before, we hope that this will make her more confident and hopefully encourage her to tune in with us more often.
She is visited by occupational therapy (OT), physical therapy (PT), and speech therapy several times a week. OT focuses on the upper body and also applies various stimuli like light touch and sound. PT focuses on the lower body. Both of them focus on preserving her range of motion. Now that she is more aware, they are trying to get her to do the movement on her own.
So I think I’ve covered everything – I hope this is enough info without being too much! If you have questions, please feel free to ask. We are so grateful for all the support and prayers you have given us. We are all going to see this through!
Physically, Judi is strong. The swelling in her head from the brain injury has obviously been down for a long time. The incision in her head has healed well. The bone flap is still out, but it is a low-priority issue. Her back incision is also healing nicely.
She is no longer on the ventilator, but she still breathes through the tracheostomy. When she first went off the ventilator, she was receiving extra oxygen through a respirator collar. However, she now goes all day on room air, with just a little extra moisture added to it. She also spends progressively longer periods with the speaking valve, and she is able to maintain oxygen saturation all day with it. She still has some lung secretions that have to be suctioned, but this is an ordeal that only occurs a couple times a day now, instead of every ten minutes. (We’re all VERY happy about that.)
When this first started, I would need both hands and at least one foot to count all the tubes and wires coming off of her. Now, she only has her PEG (feeding tube) and the PIC line in her left arm. She receives various drugs through these tubes and a constant feed of some delightful (sarcasm) looking stuff called Jevity. This week, she should be doing the swallow test. If she passes, she can start having some liquids orally.
She is not on any sedation. She gets pain medication as needed, but she is not on a constant drip. She is receiving several drugs that increase awareness and should help her along in the healing process. She is currently on a drip of antibiotics to take care of some minor infection. Nothing serious – just the natural consequences of being in the hospital for so long.
Neurologically, she has also made a lot of progress. One thing that has been hard to explain has been her level of awareness. She has been ‘awake’ off and on since a few days after the accident. However, at first, she was only awake in the sense that her eyes were open and she wasn’t quite asleep.
Now, she has two main states. One is her ‘chilled’ mode. She is in this state most of the time when she is awake. She watches TV, checks out pictures, tests her toes, and generally pays attention to what interests her. She responds to stimuli, but only for a short time before going back to what she was focusing on before. Dad and I have learned to put on our thick skins, because she will sometimes ‘play possum’ and close her eyes until people go away. We think this is a good healing time for her – she’s relaxed and doing what her brain needs to do for a while.
The other mode is her ‘connected’ mode. These phases usually last from 15-30 minutes. During these times, she responds to commands, listens to what we say, and really focuses on things visually. When she has these times, we try to stimulate her and test what she can do. As I mentioned once before, we hope that this will make her more confident and hopefully encourage her to tune in with us more often.
She is visited by occupational therapy (OT), physical therapy (PT), and speech therapy several times a week. OT focuses on the upper body and also applies various stimuli like light touch and sound. PT focuses on the lower body. Both of them focus on preserving her range of motion. Now that she is more aware, they are trying to get her to do the movement on her own.
So I think I’ve covered everything – I hope this is enough info without being too much! If you have questions, please feel free to ask. We are so grateful for all the support and prayers you have given us. We are all going to see this through!
Saturday, June 13, 2009
The Right Direction
I think the generally positive trend of this week made time go by in sort of a blur! All of a sudden it's Saturday...how did that happen?
Judi is continuing to 'dial back in' as we say. When she is one of her alert periods, she tracks very well (following movement with her eyes), follows commands, and becomes intently focused on us when we talk to her. Then there are those other times when she is ready to have some down time. But we are getting more of the alert time each day, and it is so good to see.
This week, she finally got a helmet, which allows for more therapy options like getting into a chair, and eventually walking around. The helmet protects her head, since her brain is still vulnerable without the bone flap in place. Steve wasted no time getting her into a cardiac chair, and taking her on a little trip around the hospital floor. She definitely enjoyed that!
We are hoping to see a sort of 'snowball' effect over the next stretch of her recovery. Just like anyone learning to do something, I think that maybe making these small gains will give her the confidence and strength to keep pushing her way through.
Judi is continuing to 'dial back in' as we say. When she is one of her alert periods, she tracks very well (following movement with her eyes), follows commands, and becomes intently focused on us when we talk to her. Then there are those other times when she is ready to have some down time. But we are getting more of the alert time each day, and it is so good to see.
This week, she finally got a helmet, which allows for more therapy options like getting into a chair, and eventually walking around. The helmet protects her head, since her brain is still vulnerable without the bone flap in place. Steve wasted no time getting her into a cardiac chair, and taking her on a little trip around the hospital floor. She definitely enjoyed that!
We are hoping to see a sort of 'snowball' effect over the next stretch of her recovery. Just like anyone learning to do something, I think that maybe making these small gains will give her the confidence and strength to keep pushing her way through.
Monday, June 8, 2009
From Baby Steps to Big Steps
We have seen Judi take a lot of baby steps over the last weeks. Late last night and this morning, she took a large step. She is beginning to respond to commands. Last night, she was moving her hands on command for Steve. This morning, she raised her arm on command for her nurse, and later was 'pinching' her fingers on command for me. This is a great sign, and it's one of the indicators that her cognitive function is healing.
Also, part of her therapy now is using a speaking valve. This is a little plastic cap that is attached to the trachea tube opening, which allows her to breathe in, but not out. It forces her to breathe out through her mouth. This allows her to speak because the air is going out the body as intended, rather than through the trach tube. Her nurse said that this morning, she was managing to say the word 'water.' Wow! I thought she was pulling my leg at first! Since then she hasn't been talking (imagine that, with Judi!) but we have a feeling that before too much longer, she will be talking all our ears off.
She is definitely on her way up, and we are glad to see it.
Also, part of her therapy now is using a speaking valve. This is a little plastic cap that is attached to the trachea tube opening, which allows her to breathe in, but not out. It forces her to breathe out through her mouth. This allows her to speak because the air is going out the body as intended, rather than through the trach tube. Her nurse said that this morning, she was managing to say the word 'water.' Wow! I thought she was pulling my leg at first! Since then she hasn't been talking (imagine that, with Judi!) but we have a feeling that before too much longer, she will be talking all our ears off.
She is definitely on her way up, and we are glad to see it.
Saturday, June 6, 2009
Coming Up
Judi has continued to make progress over her first week in her new room. She has become markedly more aware of what is going on, and is starting to localize pain. Though we don't like to know that she is hurting, it is definitely a sign of progress that she can move her hands to show where her discomfort is. This makes it a little easier for us to react and make sure she either gets moved or receives some pain medication to make her comfortable.
Her Weight Watchers group did a 5k this morning and dedicated their participation to Judi. They brought us a t-shirt for her on a special gold hanger, which is an award they give at their WW group. We took it in to show her this morning, and she had a very strong reaction to it, like she was trying to really take in what it was. Now it's hanging up where she can check it out, and maybe it will help remind her to keep taking those steps! Thanks so much for bringing to us.
In any case, she is continuing to take those little steps forward. Steve has been looking into some doctors who are highly experienced in Judi's type of injury, and one of them will be coming to check on her next week. We are hoping they can help come up with a game plan that will get her trucking on down the road to recovery. :)
In the meantime, just keep those prayers going. Every little bit counts!
Her Weight Watchers group did a 5k this morning and dedicated their participation to Judi. They brought us a t-shirt for her on a special gold hanger, which is an award they give at their WW group. We took it in to show her this morning, and she had a very strong reaction to it, like she was trying to really take in what it was. Now it's hanging up where she can check it out, and maybe it will help remind her to keep taking those steps! Thanks so much for bringing to us.
In any case, she is continuing to take those little steps forward. Steve has been looking into some doctors who are highly experienced in Judi's type of injury, and one of them will be coming to check on her next week. We are hoping they can help come up with a game plan that will get her trucking on down the road to recovery. :)
In the meantime, just keep those prayers going. Every little bit counts!
Thursday, June 4, 2009
Hand Jive
An odd title - but fitting for today. Judi has decided it's time to give her limbs some exercise, and was showing a lot of movement with her hands today. It takes a great deal of concentration and effort for her, but she was managing to move both arms and hands with a fair range of motion.
Being out of the ICU has definitely been a culture shock, but it has been a good move. We are still adjusting to not having people in the room constantly, and are making an effort to not be high-maintenance. But it has been a peaceful environment for her, and she is getting some good rest time, even if it's just watching TV and testing out her toes.
I would like to also use this post to ask for a few favors!
At the advice of a family friend, we purchased a digital picture frame for Judi and loaded it up with pictures. If you have pictures of yourself that you would like for her to see, even if they are not pictures WITH her, I invite you to send those to me to add to the slideshow. Thanks to a computer crash and not knowing her password, I can't get all of her pictures. So if you have any you think she'd like, please send them my way by sending them to teamjudi@gmail.com. For the lovely Weight Watchers bunch who are walking in honor of her this weekend, please get a picture of yourselves and send it to the email! I will make sure she gets it.
While searching for information about the after-effects of a craniotomy, I stumbled upon the blog of a lovely lady named Jodi. (Not to be confused with Judi!) She is suffering from a brain tumor and has been through a great deal. The last few days have been especially hard for her, because she had to have a second surgery and is experiencing tremendously painful headaches.
It was humbling to read her story, because it reminded me that no matter how huge and life-encompassing this event has been to our little family, there are people dealing with their own traumas all over the world. I would like to ask you to keep her in your thoughts and prayers. Her story is here, if you would like to let her know that you are praying for her.
As always, thank you for your continued support and love.
Being out of the ICU has definitely been a culture shock, but it has been a good move. We are still adjusting to not having people in the room constantly, and are making an effort to not be high-maintenance. But it has been a peaceful environment for her, and she is getting some good rest time, even if it's just watching TV and testing out her toes.
I would like to also use this post to ask for a few favors!
At the advice of a family friend, we purchased a digital picture frame for Judi and loaded it up with pictures. If you have pictures of yourself that you would like for her to see, even if they are not pictures WITH her, I invite you to send those to me to add to the slideshow. Thanks to a computer crash and not knowing her password, I can't get all of her pictures. So if you have any you think she'd like, please send them my way by sending them to teamjudi@gmail.com. For the lovely Weight Watchers bunch who are walking in honor of her this weekend, please get a picture of yourselves and send it to the email! I will make sure she gets it.
While searching for information about the after-effects of a craniotomy, I stumbled upon the blog of a lovely lady named Jodi. (Not to be confused with Judi!) She is suffering from a brain tumor and has been through a great deal. The last few days have been especially hard for her, because she had to have a second surgery and is experiencing tremendously painful headaches.
It was humbling to read her story, because it reminded me that no matter how huge and life-encompassing this event has been to our little family, there are people dealing with their own traumas all over the world. I would like to ask you to keep her in your thoughts and prayers. Her story is here, if you would like to let her know that you are praying for her.
As always, thank you for your continued support and love.
Tuesday, June 2, 2009
As of yesterday evening, Judi has moved out of the ICU - a big step in the right direction!
We cannot express just how amazing the care was at the Shock Trauma unit, and we definitely miss a lot of the faces over there. There are some angels walking around over there, no doubt about it. However, it was definitely a good move for her. She was no longer in need of the high maintenance care given in that unit, and with summer coming up, there will probably be some folks needing that space and the excellent care the trauma unit gives. Things are much quieter now, and the environment is a little more conducive to rest for her.
Physically, she is doing very well. She is still breathing with the trach collar, but is getting stronger with it all the time. She is sitting up for longer periods and tolerating it fairly well. Her awareness level is also continuing to creep up. All baby steps in the right direction.
Even with the move, for right now, we are still asking for everyone to wait on visiting. While I don't want to sensationalize or paint a grimmer picture than is real, she is not at her very best right now. All the choices we make right now are to see that she has a comfortable, restful healing time. When she is more aware and ready to enjoy your company, we will let everyone know.
We cannot express just how amazing the care was at the Shock Trauma unit, and we definitely miss a lot of the faces over there. There are some angels walking around over there, no doubt about it. However, it was definitely a good move for her. She was no longer in need of the high maintenance care given in that unit, and with summer coming up, there will probably be some folks needing that space and the excellent care the trauma unit gives. Things are much quieter now, and the environment is a little more conducive to rest for her.
Physically, she is doing very well. She is still breathing with the trach collar, but is getting stronger with it all the time. She is sitting up for longer periods and tolerating it fairly well. Her awareness level is also continuing to creep up. All baby steps in the right direction.
Even with the move, for right now, we are still asking for everyone to wait on visiting. While I don't want to sensationalize or paint a grimmer picture than is real, she is not at her very best right now. All the choices we make right now are to see that she has a comfortable, restful healing time. When she is more aware and ready to enjoy your company, we will let everyone know.
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