Toren really allowed himself to be pushed today, he played blokus, mancala, and we explored scrabble, with me and played cards with his recreational therapist. When his PT didn't come I supported him in doing his exercises, he is such a trooper. His breathing is much improved, but even gentle exertion causes him to break a sweat. Which is hardly surprising considering everything he has been through. Toren agreed to take 3 or 4 walks around the unit at a dramatically improved pace, with fewer stops for regaining balance along the way. But as he said he is simply exhausted, so he asked to get out of the recliner and go to bed. Dinner is cooling on the tray, but the nursing assistants are so sweet, they will warm it for him when he is ready to eat.
My day consisted of doing what was necessary to get him admitted to rehab, which is not easy at all, even though one would have thought it would have been obvious. Still a bed has been found, and we move mid-day tomorrow. Sunnyview has a wonderful reputation and I am confident that in-patient rehab. will give him the boost he needs and so richly deserves. I am sure Toren will find it less gruelling and more restful and varied than the mummy rehab program. Toren is feeling sad, and overwhelmed some of the time, but then he just gives one of his wry smiles and gets on with the task at hand.
I have already started to get the ball rolling in his having the necessary support once we get home... although it is hard to predict what that might be right now. Still it is important to be proactive and stay on top of the system. Toren's cognitive rehab program ends this week and then another session starts the following week, Dr. Joan Gold assured me that they will save a place for him. Hopefully it will only be a week or two into the program before he is strong enough to join them. He is lucky to have so much support. Your messages, emails and comments are a wonderful support to all of us. Hopefully Fiona will come up tomorrow morning and support us getting ready to transition to our next step along the way, I find transitions almost as challenging as Toren.
Helaini is on her way down this evening and she is always a breath of fresh air... he lights up when she comes in the room, or phones. It is such a joy to watch them together they love each other so dearly.
Monday, November 30, 2009
Day 19 - A little Stronger every day
Yesterday Toren was soooo tired, every trip around the unit resulted in a long nap, as did eating, and having a shower. But considering what his body has been through sleep seems like a reasonable need. That being said he still played blokus with me last night when I got back from the movies... Marvin spent a few hours down here, mainly keeping Toren company while he rested (this is more important than one realizes)... although they did explore the strange facts of Guinness Book of World Records. I got to see An Education - a lovely little movie was lots of interesting elements. It was the first time I can recall taking myself off to a theatre on my own, even in this place Toren is succeeding to keep me pushing my own limits.
Toren was happy to see me when I got back, which was rather nice.
We had a pleasant visit with Cynthia earlier in the afternoon on Sunday and I got to go to Washington Park and walk around the lake in the sunshine, and reflect on the magnitude of our blessings, and yes that was well balanced by the equal intensity of our challenges. Still every single day Toren is making progress. He is quietly determined to regain his skills and his strength. He is walking around the unit once more each day, with more strength and while he still needs the walker, there are times he can turn around without it... or stand up without holding on, all great accomplishments for a man only out of ICU for 4 days. He just got his IV removed... and is truly thrilled to be free of it. One of the Neurologists saw him walking in the hall today and said she was stunned and delighted with his progress.
I share with Toren your emails and comments, and he always smiles. He is still not talking much, which is rather strange, but I am confident that it is only temporary.
Today he had a visit from OT and I am sure speech and PT will follow. We went down the hall together to speak to the Case Manager, and the process has been started to get him to Sunnyview Rehab hospital. I am also reaching out to his regular TBI case worker to get help at home when he returns... which we hope will be within a couple of weeks, once he is able to do stairs, etc.
Toren is an inspiration, he is sad and shares that with me, but he is also aware of how blessed
he is. Even exhausted he lifts a hand to wave when he hears me on the phone to people he cares about. I came across a lovely quote recently - Sometimes the most important thing we do in our day is the rest between two deep breaths... Toren is mastering resting between.
Toren was happy to see me when I got back, which was rather nice.
We had a pleasant visit with Cynthia earlier in the afternoon on Sunday and I got to go to Washington Park and walk around the lake in the sunshine, and reflect on the magnitude of our blessings, and yes that was well balanced by the equal intensity of our challenges. Still every single day Toren is making progress. He is quietly determined to regain his skills and his strength. He is walking around the unit once more each day, with more strength and while he still needs the walker, there are times he can turn around without it... or stand up without holding on, all great accomplishments for a man only out of ICU for 4 days. He just got his IV removed... and is truly thrilled to be free of it. One of the Neurologists saw him walking in the hall today and said she was stunned and delighted with his progress.
I share with Toren your emails and comments, and he always smiles. He is still not talking much, which is rather strange, but I am confident that it is only temporary.
Today he had a visit from OT and I am sure speech and PT will follow. We went down the hall together to speak to the Case Manager, and the process has been started to get him to Sunnyview Rehab hospital. I am also reaching out to his regular TBI case worker to get help at home when he returns... which we hope will be within a couple of weeks, once he is able to do stairs, etc.
Toren is an inspiration, he is sad and shares that with me, but he is also aware of how blessed
he is. Even exhausted he lifts a hand to wave when he hears me on the phone to people he cares about. I came across a lovely quote recently - Sometimes the most important thing we do in our day is the rest between two deep breaths... Toren is mastering resting between.
Sunday, November 29, 2009
Day 18, Life beyond ICU
Good Morning All,
Toren had a great night's sleep last night... his first full night's natural sleep. He had a really good day yesterday. He learned how to manage walking with the walker, and got stronger and more steady each time we took a lap around the unit. Toren is being so mellow... hard to imagine, but he is very very tired. His body and mind have been through so much it is incredible to me how strong he is, Thank God he is young and determined.
All the frightening intensity of ICU living are behind us, and we would like it to stay there, although I am very grateful for all that was done to get us to this point, ICU living is disorienting at the very least.
Yesterday Toren had a speech/cognition/memory evaluation, while there have been significant losses, there is every reason to believe that with therapy, support and patience he will regain those skills. We know the road we are on, it is familiar territory, with a slightly different view point, and while it can be a bumpy road, we know that we are going to get lots of encouragement and help from our friends and family, as well as the skilled professionals along the way.
The challenges of post ICU hulluscinations also seem to be behind us, there is no more floating, or driving trucks in the middle of the night, or spider webs all over the room, and that for me is one of the most challenging phases of early recovery. It is hard to know which one of us is further from reality, it is easier for me to acknowledge what he is seeing than try to convince Toren that it is all in his head, plus it provides relief from the boredom of hospital life. It is thrilling that Toren is 4 days without a grand mal seizure, which makes us think that the new meds are kicking in and doing their job, and that the brain in settling after all the trauma of the past two weeks.
Yesterday while Helaini spent the evening we 3 played catch in the room - oh yes we now have a new room, with morning sunshine and it is a single so we don't hear anyone else - our own bathroom... and when Toren woke late this morning the sun was pouring onto him... he looked so cosy and comfortable, for a moment I could pretend that we were in Hotel Albany Med... and then of course the nurse - a sweetheart - came in with meds, and reality took over. Still compared to last week this really is just fine.
He looks tired and pale now, the little things that we barely consider are great achievements. A walk around the unit, like running a half marathon... which is progress, the day before yesterday it was like a full marathon. Eating, is exhausting... just juggling the spoon to the mouth requires so many small adjustments and muscles and attention... So today while you enjoy something to eat, dont just bless the food, the farmer, the land... take the time to notice the parts of your body involved in moving food from the plate to your mouth, the bones, the muscles, the hand/eye co-ordination. From this vantage point, life gets simpler, blessings become more easy to recognize, and yes everything can been seen as a curse or a blessing, the trick for me, for Toren, and most probably for all of us it to keep shifting our focus, and tune our hearts and minds into blessing seekers.
We can use the cell phone here in the room, so feel free to call. It would be lovely to start to have visitors, which would entertain Toren, I think he will bore of my company quickly. So starting to schedule visits would be a wonderful thing.
Marvin is going to start sleeping here some nights, which will give me a chance to get things organized for our return. We are anticipating going to a rehab facility early in the week, and then it would be lovely to think of being home before Channukah, all things with God's help.
We send you our love and our deepest appreciation for your part in our lives.
Your notes, continue to carry us forward on this journey - it keeps the outsider world present for us, reminding us of the rich full lives that await us beyond this part of the journey.
Toren had a great night's sleep last night... his first full night's natural sleep. He had a really good day yesterday. He learned how to manage walking with the walker, and got stronger and more steady each time we took a lap around the unit. Toren is being so mellow... hard to imagine, but he is very very tired. His body and mind have been through so much it is incredible to me how strong he is, Thank God he is young and determined.
All the frightening intensity of ICU living are behind us, and we would like it to stay there, although I am very grateful for all that was done to get us to this point, ICU living is disorienting at the very least.
Yesterday Toren had a speech/cognition/memory evaluation, while there have been significant losses, there is every reason to believe that with therapy, support and patience he will regain those skills. We know the road we are on, it is familiar territory, with a slightly different view point, and while it can be a bumpy road, we know that we are going to get lots of encouragement and help from our friends and family, as well as the skilled professionals along the way.
The challenges of post ICU hulluscinations also seem to be behind us, there is no more floating, or driving trucks in the middle of the night, or spider webs all over the room, and that for me is one of the most challenging phases of early recovery. It is hard to know which one of us is further from reality, it is easier for me to acknowledge what he is seeing than try to convince Toren that it is all in his head, plus it provides relief from the boredom of hospital life. It is thrilling that Toren is 4 days without a grand mal seizure, which makes us think that the new meds are kicking in and doing their job, and that the brain in settling after all the trauma of the past two weeks.
Yesterday while Helaini spent the evening we 3 played catch in the room - oh yes we now have a new room, with morning sunshine and it is a single so we don't hear anyone else - our own bathroom... and when Toren woke late this morning the sun was pouring onto him... he looked so cosy and comfortable, for a moment I could pretend that we were in Hotel Albany Med... and then of course the nurse - a sweetheart - came in with meds, and reality took over. Still compared to last week this really is just fine.
He looks tired and pale now, the little things that we barely consider are great achievements. A walk around the unit, like running a half marathon... which is progress, the day before yesterday it was like a full marathon. Eating, is exhausting... just juggling the spoon to the mouth requires so many small adjustments and muscles and attention... So today while you enjoy something to eat, dont just bless the food, the farmer, the land... take the time to notice the parts of your body involved in moving food from the plate to your mouth, the bones, the muscles, the hand/eye co-ordination. From this vantage point, life gets simpler, blessings become more easy to recognize, and yes everything can been seen as a curse or a blessing, the trick for me, for Toren, and most probably for all of us it to keep shifting our focus, and tune our hearts and minds into blessing seekers.
We can use the cell phone here in the room, so feel free to call. It would be lovely to start to have visitors, which would entertain Toren, I think he will bore of my company quickly. So starting to schedule visits would be a wonderful thing.
Marvin is going to start sleeping here some nights, which will give me a chance to get things organized for our return. We are anticipating going to a rehab facility early in the week, and then it would be lovely to think of being home before Channukah, all things with God's help.
We send you our love and our deepest appreciation for your part in our lives.
Your notes, continue to carry us forward on this journey - it keeps the outsider world present for us, reminding us of the rich full lives that await us beyond this part of the journey.
Friday, November 27, 2009
Friday - We are out of ICU
Last night at about 9pm we moved out of ICU, it was lovely to say goodbye to that stage of the journey. Toren was excited and this morning he is sitting up in his recliner, already having eaten a full breakfast, albeit pureed. He is speaking a little more, and physically much stronger than yesterday. Last night Toren got at least 3.5 hours sleep straight. This is a first since he came off sedation, it was wonderful, and I can see the benefit in his energy this morning. He was delighted to hear Helaini's voice on the phone last night.n He is busy fussing with a fiddle toy on his lap as I write, stopping from time to time to shine me one of his brilliant smiles. I am confident with rest, patience, pt, ot and speech therapy Toren will be make his way back to good health. The new medication is slowly reaching therapeutic levels. The MRI shows no significant change from before, which is such a relief. The last 5 days have been an incredible roller coaster ride, but we made it through. Help from those who love us in these roughest times has kept us going, whether it was soup and clean clothes, or Marvin & Helaini taking a few nights of hospital shift so I could sleep across the street in the Hotel, coaching on the phone, emails that keep us connected... every piece has made the world of difference, reducing the sense of isolation and keeping me grounded and hopeful. My mum made it safely to the airport for her trip to the UK, thanks to Marvin who happily took her down to Newark, and our community really gathered around us and gave her rides back and forth to the hospital before she left.
Last night when I couldn't sleep I started to count blessings... out loud to Toren... we got well past 100 before finally drifting off to sleep.
If you are reading this, please trust that you were on the list. Years ago I had a practice of writing down 3 wonderful things that happened each day... These days, even on the darkest days I am struck by the abundance of blessings in our lives. Friends, gifted nurses, strong will, determination, loving family, cell phones, blogs, wi-fi at the hospital, clean sheets, king sized beds, whirlpools, swimming pools, morning coffee, grapefruit juice and water, fiddle toys, cartoons on TV, Patient Care people, recliners in hospital rooms, daughters, sons, mothers, in-laws, parks, books, clean clothes, hot water in the shower, lap tops, time with son, hearing the words I love you, saying the words I love you... the list is endless. For me it comes back again and again to choosing how I look at the world.
I hope as Toren recovers he can retain his willingness to see that which is good, to count the days ahead, however challenging as a gift, and I hope I can acknowledge his need to explore the darkness with equal grace.
Last night when I couldn't sleep I started to count blessings... out loud to Toren... we got well past 100 before finally drifting off to sleep.
If you are reading this, please trust that you were on the list. Years ago I had a practice of writing down 3 wonderful things that happened each day... These days, even on the darkest days I am struck by the abundance of blessings in our lives. Friends, gifted nurses, strong will, determination, loving family, cell phones, blogs, wi-fi at the hospital, clean sheets, king sized beds, whirlpools, swimming pools, morning coffee, grapefruit juice and water, fiddle toys, cartoons on TV, Patient Care people, recliners in hospital rooms, daughters, sons, mothers, in-laws, parks, books, clean clothes, hot water in the shower, lap tops, time with son, hearing the words I love you, saying the words I love you... the list is endless. For me it comes back again and again to choosing how I look at the world.
I hope as Toren recovers he can retain his willingness to see that which is good, to count the days ahead, however challenging as a gift, and I hope I can acknowledge his need to explore the darkness with equal grace.
Wednesday, November 25, 2009
Toren's Awake
Well, just in time for the celebration of Thanksgiving, Toren woke up again. He is very tired, and not talking just yet, but nodding in response to simple questions. He is still working through a lot of sedation, the nurse is here and she is about to do a swallow test... the first step to gaining real liquids and food.
More later...
More later...
Tuesday, November 24, 2009
The Recovery Rollercoaster Ride
It is Tuesday morning and for hours and hours I have watched Toren in a strange disoriented state, manifesting all sorts of strange seizure and non seizure type actions. The doctors are waiting and watching. I am praying. He hasn't been able to communicate, walk, manage most movements of his body. It is like he is locked behind a wall and struggling to get out. Of everything we have travelled through together this past 17 months, this is on par with the worst. And having spent enough weeks in Rehab Hospitals is penetrates to my deepest fears, that Toren will get lost somewhere inside his brain, and not be able to share himself with us. All night he alternated between restless sleep and seizure like posturing. I feel like any minute he might suddenly snap out of it and be with us again. but while he is not as overcome now as he was yesterday, he is still beyond our reach.
Today I will be pushing for an MRI to see if we can understand on film what is not clear to us from the outside symptoms. Maybe we can gain some knowledge that will allow us to start to treat more effectively. A small percentage of patients with Epilepsy (15%), also have a condition called PNES which means they have seizure type reactions without the brain activity that determines Epilepsy... this might be the newest complication that we are looking at. I hope and pray that Toren rejoins us soon, that the bright smile he was sharing with us yesterday morning returns along with the corny jokes (yes I know they will bore me quickly enough) that are his forte. I want to see that enthusiastic man determined to be independent and strong, whose physical body bounces back carrying him forward towards recovering cognitively.
It is hard to express adequately enough the compassion of the nurses. They are so good and caring and make this impossible journey manageable step by step.
Toren needs our prayers and our love. He has so much to offer, and gives so generously of himself. During his brief time of awareness and regaining of strength he was heartened by the outpouring of love and support that our communities have showered on us. He thanked everyone who walked into his room... including those who came to sample his blood. He was energetic and determined, and yes very frightened by what had happened to him. We talked about wanting to have a fun outing after all this was behind us... Toren suggested a tropical Island - we might limit it to Florida... but season it with swimming with dolphins. I have been trying to lure him back into this world (although why anyone would desire to be present in the ICU by day 13 is beyond me) with promises of fun, bowling with the Lowes gang. Horseback riding in the Adirondacks... and yes I have broken down... a dog.
Thank you all for being there, for caring, for holding us in your hearts, and for creating a circle of love around us as we continue to battle for Toren's recovery, may it come soon.
Today I will be pushing for an MRI to see if we can understand on film what is not clear to us from the outside symptoms. Maybe we can gain some knowledge that will allow us to start to treat more effectively. A small percentage of patients with Epilepsy (15%), also have a condition called PNES which means they have seizure type reactions without the brain activity that determines Epilepsy... this might be the newest complication that we are looking at. I hope and pray that Toren rejoins us soon, that the bright smile he was sharing with us yesterday morning returns along with the corny jokes (yes I know they will bore me quickly enough) that are his forte. I want to see that enthusiastic man determined to be independent and strong, whose physical body bounces back carrying him forward towards recovering cognitively.
It is hard to express adequately enough the compassion of the nurses. They are so good and caring and make this impossible journey manageable step by step.
Toren needs our prayers and our love. He has so much to offer, and gives so generously of himself. During his brief time of awareness and regaining of strength he was heartened by the outpouring of love and support that our communities have showered on us. He thanked everyone who walked into his room... including those who came to sample his blood. He was energetic and determined, and yes very frightened by what had happened to him. We talked about wanting to have a fun outing after all this was behind us... Toren suggested a tropical Island - we might limit it to Florida... but season it with swimming with dolphins. I have been trying to lure him back into this world (although why anyone would desire to be present in the ICU by day 13 is beyond me) with promises of fun, bowling with the Lowes gang. Horseback riding in the Adirondacks... and yes I have broken down... a dog.
Thank you all for being there, for caring, for holding us in your hearts, and for creating a circle of love around us as we continue to battle for Toren's recovery, may it come soon.
Sunday, November 22, 2009
Day 11 in ICU land, the body is healing, now we focus on the brain
It is Sunday afternoon in ICU land and Toren is gadget/monitor free... Thank God. He is young and strong, and was healthy when all this hit, so he is coming back with incredible speed physically. Toren is able to walk with support on both sides of him and each time he goes a little further. However, walking appears to produce a strange disorientation episode - which includes loss of speech, eye fluttering, etc. It is unlike anything we have seen before and it lasts about 10 minutes... he has been up on his feet 4 times, and has had an 'event' each time. We are waiting to have another Neuro exam/follow up to see what is what. It is possible that this is just post brain trauma and will resolve itself as his brain recovers. Of course, he has been in such critical condition that no MRIs etc have been done, so I am hopeful that testing will reveal something, allowing us to better understand his condition and prevent future emergencies. I know even more now about medicine than I ever expected, and frankly enough is enough.
Ideally, we will be discharged from ICU and moved to the seizure lab or Neuro unit tomorrow. Toren had no sleep last night, he was very restless and anxious. I slept at the hotel across the street - a bed was delightful after 10 days and nights in the room on a recliner type chair. Toren is talking although he is struggling with finding some words. He is understandably very tired and anxious to get out of the hospital, and back to him own life ~ healthy and appropriate responses to the situation. The nurses are thrilled for us, and excited to see him bounce back physically, they are equally responsive and attentive to this new manifestation of his condition. I remind myself that these are little worries compared to those of the middle of last week. Even though I knew there would be challenges once his life was out of danger, I am saddened. It is so troubling to see him have to wrestle with even more.
Toren is wonderfully appreciative of his nurses and doctors, and he is being a co-operative patient. However, his natural impulsivity and desire to get going did pull out his central line last night, as he got himself into a seated position on the bed without support or help. Toren is well aware of what is going on, and it overwhelms him from time to time, but he is expressing his feelings and that is a good thing.
Visits from my mum, Helaini, Linda & Jonathan, Buddy and Melinda all cheered him up, but it is also very tiring for him, now that Toren is alert and with it we need to find just the right balance, which I imagine will change day by day. I, of course, need breaks, but it doesn't work for Toren when I am not around, especially during the night.
Right now it is 7pm, Toren had a hearty dinner, he is sitting in a recliner watching CSI Miami, and really enjoying it. His beard is quite full and dark, and the nurse teased that he was McDreamy... Toren said he would rather be McSteamy... with a big smile. He just invited the night nurse to take a seat and join us watching TV, clearly whatever else has changed, his charm and warmth has not been impacted.
Ideally, we will be discharged from ICU and moved to the seizure lab or Neuro unit tomorrow. Toren had no sleep last night, he was very restless and anxious. I slept at the hotel across the street - a bed was delightful after 10 days and nights in the room on a recliner type chair. Toren is talking although he is struggling with finding some words. He is understandably very tired and anxious to get out of the hospital, and back to him own life ~ healthy and appropriate responses to the situation. The nurses are thrilled for us, and excited to see him bounce back physically, they are equally responsive and attentive to this new manifestation of his condition. I remind myself that these are little worries compared to those of the middle of last week. Even though I knew there would be challenges once his life was out of danger, I am saddened. It is so troubling to see him have to wrestle with even more.
Toren is wonderfully appreciative of his nurses and doctors, and he is being a co-operative patient. However, his natural impulsivity and desire to get going did pull out his central line last night, as he got himself into a seated position on the bed without support or help. Toren is well aware of what is going on, and it overwhelms him from time to time, but he is expressing his feelings and that is a good thing.
Visits from my mum, Helaini, Linda & Jonathan, Buddy and Melinda all cheered him up, but it is also very tiring for him, now that Toren is alert and with it we need to find just the right balance, which I imagine will change day by day. I, of course, need breaks, but it doesn't work for Toren when I am not around, especially during the night.
Right now it is 7pm, Toren had a hearty dinner, he is sitting in a recliner watching CSI Miami, and really enjoying it. His beard is quite full and dark, and the nurse teased that he was McDreamy... Toren said he would rather be McSteamy... with a big smile. He just invited the night nurse to take a seat and join us watching TV, clearly whatever else has changed, his charm and warmth has not been impacted.
Friday, November 20, 2009
Shabbos Peace
It is Friday afternoon, the sky is already dark, but my heart is full of light and delight. Toren is sitting up in bed, sleeping quietly, all the waves on the monitor are as they should be, the numbers are all good... the nurses are relaxed enough to walk away, the doctors are smiling. From one week to the next our world has changed. As last shabbos drew in I cried to my friend Steve... I don't even know what to pray for. This week the wisdom he shared has blossomed into a flower of relief. Sh'laymut, wholeness. The prayers of people around the globe called on all that is holy to bring strength and healing to Toren, and by grace, the doctors were wise and determined enough, the nurses compassionate & diligent enough, the prayers sincere enough, Toren's will and body strong enough to bring forth a miracle. The promise of health restored.
Toren is very weak, but his mood is good, he is talking a little, smiling and has blown me kisses. He worked with the physical therapist willingly even though his body is sore and lifting his eyelids can seem like running a marathon. He is amazing, and kind, and asked after me, and his sister. His sweetness shines through him, and fills this room with warmth. For all the prayers, the hugs, the words, the phone calls, the chocolates, etc., etc.. thank you. I know from the bottom of my heart that we were held, and will continue to be held in ways too numerous to count... and yet each and every one is important and a treasure.
Shabbat Shalom
Martina
Toren is very weak, but his mood is good, he is talking a little, smiling and has blown me kisses. He worked with the physical therapist willingly even though his body is sore and lifting his eyelids can seem like running a marathon. He is amazing, and kind, and asked after me, and his sister. His sweetness shines through him, and fills this room with warmth. For all the prayers, the hugs, the words, the phone calls, the chocolates, etc., etc.. thank you. I know from the bottom of my heart that we were held, and will continue to be held in ways too numerous to count... and yet each and every one is important and a treasure.
Shabbat Shalom
Martina
Where there is a Toren there's a Will
It has been non-stop with Toren since the wee hours of the morning... the doctors had a plan to slowly try weaning him off the vent today... Toren co-operated for a while... and upon hearing the all clear from the respiratory therapist started to work his own plan... He wrestled, struggled and huffed and puffed... Making enough fuss that I was sent to the corridor... that only happens when things are spiralling out of control... Today it was beyond the doctor's control, they gave in, Toren is sedated, but breathing oxygen through a mask - the dreaded tube is gone, and when he awakes enough the doctors will check his neck and hopefully move his spinal collar. He looks exhausted, but I am confident that he will be far happier and more relaxed without the tube. His stats, are well within range. I am holding his hand.
As you read this I would like each of you to take a deep breath or two... notice how easy it is... how you take it for granted, and know this is a rare blessing, the original gift from God. For Toren each breath is painful right now, effort-full, he is here, he is winning battle after battle, and lying still unfettered from the EEG and the Tube he is sweating with the effort to breathe. And I am clear he is up to this fight. The nurses asked today if he was stubborn by nature... what could I say - I explained the truth - he has a strong will - he comes by it honestly, and it has served his well this 17 months.
Rejoice in the challenges both small and large, that come your way today.
Watching this wonderful medical professionals makes me so thrilled that Helaini has chosen this path, the work might not be glorious, but it is truly a work of partnership with God.
As you read this I would like each of you to take a deep breath or two... notice how easy it is... how you take it for granted, and know this is a rare blessing, the original gift from God. For Toren each breath is painful right now, effort-full, he is here, he is winning battle after battle, and lying still unfettered from the EEG and the Tube he is sweating with the effort to breathe. And I am clear he is up to this fight. The nurses asked today if he was stubborn by nature... what could I say - I explained the truth - he has a strong will - he comes by it honestly, and it has served his well this 17 months.
Rejoice in the challenges both small and large, that come your way today.
Watching this wonderful medical professionals makes me so thrilled that Helaini has chosen this path, the work might not be glorious, but it is truly a work of partnership with God.
Good News from ICU land on day 9...
During the night Toren became more and more alert, he is now able to nod and shake his head and use blinking and hand movement to help us know what he wants. Right now he is resting peacefully. He has been able to let us know that he knows what is going on, he wanted me to read him the info from his monitors, explain the extibation process. He has asked for more pain meds. His lungs are really the issue. He is able to ask us to move him, and to control his breathing most of the time when he gets anxious. This is incredible progress... it is hard to imagine the distance we have travelled since this time yesterday morning. The staff are being wonderful, patient, and appreciative of my presence to help ask questions and be a constant companion for him. I slept with my hand in his so he could squeeze when he needed something. Never has a sleepless night been more rewarding.
Toren is knowledgeable and courageous enough to ask for them to suction him and is being so incredibly tolerant of the process. He is an inspiration, I am so grateful... while I know we still have a long haul ahead I also know that we have an amazing community to support us when we get out of here. Already we are held up by prayers and well wishes. The cards, the emails, the rides for my mother to and from the hospital have made this difficult time so much more manageable. Lilah has been well cared for by Tara and Gracie. My clothes have be whisked away and returned clean and fragrant. Food has be dropped off at the right moment. Books, chocolate and gift cards have magically appeared. Thank you for cradling us, and at the same time giving us the space we need to handle the challenges of ICU land. Please keep Toren in your prayers today, it will be a day full of challenges, but I know that he is up to it. His spirit is so strong and his mind alert, and his patience a delight to experience. As I write this the sun is rising, the sky is blue and the clouds are like a painting. Enjoy your day, count your blessings, eat your food with quiet delight at being about to choose, and to chew. Make note of the delight of moving your head, your hand, without effort. Dance a few steps to the music you love... and know that Toren and I are dancing with you in are hearts.
During the night Toren became more and more alert, he is now able to nod and shake his head and use blinking and hand movement to help us know what he wants. Right now he is resting peacefully. He has been able to let us know that he knows what is going on, he wanted me to read him the info from his monitors, explain the extibation process. He has asked for more pain meds. His lungs are really the issue. He is able to ask us to move him, and to control his breathing most of the time when he gets anxious. This is incredible progress... it is hard to imagine the distance we have travelled since this time yesterday morning. The staff are being wonderful, patient, and appreciative of my presence to help ask questions and be a constant companion for him. I slept with my hand in his so he could squeeze when he needed something. Never has a sleepless night been more rewarding.
Toren is knowledgeable and courageous enough to ask for them to suction him and is being so incredibly tolerant of the process. He is an inspiration, I am so grateful... while I know we still have a long haul ahead I also know that we have an amazing community to support us when we get out of here. Already we are held up by prayers and well wishes. The cards, the emails, the rides for my mother to and from the hospital have made this difficult time so much more manageable. Lilah has been well cared for by Tara and Gracie. My clothes have be whisked away and returned clean and fragrant. Food has be dropped off at the right moment. Books, chocolate and gift cards have magically appeared. Thank you for cradling us, and at the same time giving us the space we need to handle the challenges of ICU land. Please keep Toren in your prayers today, it will be a day full of challenges, but I know that he is up to it. His spirit is so strong and his mind alert, and his patience a delight to experience. As I write this the sun is rising, the sky is blue and the clouds are like a painting. Enjoy your day, count your blessings, eat your food with quiet delight at being about to choose, and to chew. Make note of the delight of moving your head, your hand, without effort. Dance a few steps to the music you love... and know that Toren and I are dancing with you in are hearts.
Thursday, November 19, 2009
Thursday is drawing to a close, and it has been a full and exciting day with lots of wonderful baby steps in the right direction. Fiona spent the day with me today, thank goodness, her ability to sit in silence with me, window shop the hospital candy shelves, and walk at speed down hallways is only matched by her ability to be engaged in trivia searches on google. She really is one in a million. Toren struggled today while the doctors changed his medications. He is now on a far lighter sedative, which will allow him to be carefully weaned off the vent hopefully before week two draws to a close... so we have a journey ahead of us. For the first half of today though he sweated and dealt with a racing heart, a slowing heart, and hyperventilation, and so on. Still with patience and trial and error, the doctors were able to get the dosage just right and Toren drifted into a gentle sleep. Triggering the vent for breaths and being supported by the vent rather than driven to breathe by it. This is wonderful especially considering the fragile state of his lungs.
This evening Toren squeezed my hand, made eye contact, nodded his head, and slowed his breathing upon suggestion.
I am so happy, relieved, and grateful... we are so blessed just to recognize each other. I have my reclining chair pulled right up to his bed so I can go to sleep holding his hand. There is more room in here now the EEG is off his head so I can stay closer to him. Right now he is resting comfortably, breathing slowly and I know he is not in pain because I checked with him. Sleep with be a quiet blessing tonight, filled with hope rather than angst.
With love.... please offer up a prayer of gratitude after you read this... This is surely another miracle for us.
M
This evening Toren squeezed my hand, made eye contact, nodded his head, and slowed his breathing upon suggestion.
I am so happy, relieved, and grateful... we are so blessed just to recognize each other. I have my reclining chair pulled right up to his bed so I can go to sleep holding his hand. There is more room in here now the EEG is off his head so I can stay closer to him. Right now he is resting comfortably, breathing slowly and I know he is not in pain because I checked with him. Sleep with be a quiet blessing tonight, filled with hope rather than angst.
With love.... please offer up a prayer of gratitude after you read this... This is surely another miracle for us.
M
Thursday Morning, The 8th Day
This morning Toren's head was released from the EEG machine... the room smells like a nail salon from the Acetone it takes to remove the electrodes. This is progress, one less piece of equipment. Relatively speaking he had a quiet night, he continues to move in the right direction. He even turned his head away from the suction during the night, a way of his silently expressing his dislike for the whole process... and who would blame him. Today is day 8 and today the doctors will experiment with Toren driving the vent rather than the vent driving his breathing... it is a good first step towards coming off the ventilator. The other experiment for the day is lightening Toren's level of sedation... which is tricky, because expereince tells us that he is very disconcerted about the whole tube situation, and he is far to vulnerable to do without... so we will be watching carefully, very carefully indeed.
The sky is still overcast, but hopefully the sun will break through the clouds. Fiona is going to keep me company today. Mummy is going to go to London as planned on Monday, because she will be very needed when we get home, so she needs to get this trip in before discharge. I miss Toren, it will be great to have him back... yesterday for just a moment he opened both his eyes... The eyes are such a point of connection between people, it was such an exciting moment. Hopefully before long, waking up and opening his eyes will move from being an event worthy of writing to something we acknowledge with quiet gratitude as a daily blessing. Although I know from this year, that everything becomes a blessing if you open up your heart. Pain and suffering can open your heart or slam it shut, we have been so lucky to have our hearts pried open... while the grief can be intense, the joys and multiplied a thousand times.
These days in the hospital have been filled with memories of the bountiful blessings that have graced our lives. A wise friend recently wrote a bit about fear or love, I find myself working at consciously stepping into a stream of love, and when I do I can feel my body shift, and my world view open. May you all know a day of consciously choosing to stand from a place of loving. With my love.
The sky is still overcast, but hopefully the sun will break through the clouds. Fiona is going to keep me company today. Mummy is going to go to London as planned on Monday, because she will be very needed when we get home, so she needs to get this trip in before discharge. I miss Toren, it will be great to have him back... yesterday for just a moment he opened both his eyes... The eyes are such a point of connection between people, it was such an exciting moment. Hopefully before long, waking up and opening his eyes will move from being an event worthy of writing to something we acknowledge with quiet gratitude as a daily blessing. Although I know from this year, that everything becomes a blessing if you open up your heart. Pain and suffering can open your heart or slam it shut, we have been so lucky to have our hearts pried open... while the grief can be intense, the joys and multiplied a thousand times.
These days in the hospital have been filled with memories of the bountiful blessings that have graced our lives. A wise friend recently wrote a bit about fear or love, I find myself working at consciously stepping into a stream of love, and when I do I can feel my body shift, and my world view open. May you all know a day of consciously choosing to stand from a place of loving. With my love.
Wednesday, November 18, 2009
The Wee Hours
Sometimes sleep is disturbed by Skidmore Students outside our house, or the dog barking... tonight it is the ventilator alarm, the chiming indicates that Toren is breathing too rapidly... his poor chest lifts and falls at an frightening speed... the nurse comes... the minute lasts forever... and then it really stretches into two or three, the flashing of the monitor screen, the sound of the suctioning of his tube, the look of focus on the nurse's face, the light frown between his eyebrows... and the sound of my own voice chanting what I only hope is soothing notes... And then a little relief, he slows a little, for a minute I keep singing and the angel of mercy garbed in pink scrubs returns with the tiny bottle of magic, a small extra dose of pain medication... I keep singing, he keeps slowing his breath... but not enough to still the flashing lights, the warning messages the jump off the screen and burn themselves into my mind... and then the tube is opened and the magic potion pours into Toren, number by number his heart rate drops, the flashing signs disappear and his chest stops quivering like the heart of a frightened rabbit... I keep holding his hand, my voice is the last warbelling trace of the bump in the road... Tonight we have hit this bump 4 times... and each time we move through it I am grateful beyond measure to land softly, trembling on the other side...This leg of the journey is like find a patch of moguls on the mountain and not having the skill to hop lightly from top to top, but bounce breathlessly with only prayer and God's grace holding you upright... I am tired, but charged the nurse walks away calm, secure in her skills, his youthful strength, and the compassionate instruction to me... Get some sleep. Toren slumbers drugged into a quiet his healing body so sorely needs... and I turn to my own form of comfort... committing experience into words, hoping that as they land on the page they leave space in my being of quiet and wholeness. Ah the tired body craves the hospital chair... even more than my own bed... because this chair keeps me close to my beloved Toren.
Subscribe to:
Posts (Atom)