We moved to Perth, Western Australia in 1990 from Toronto. Previously Kevin lived in Harare, Zimbabwe. After all that he's been through, I can't but feel extremely grateful for the technology that we have in our western world, and am eternally grateful that we weren't part of the Zimbabwe health system.
On May 17th, 2001 Kevin had a sudden loss of consciousness at home while stepping out of the shower. He had a grade 4 SAH 2nd to R anterior communicating artery aneurysm. He spent 19 days in ICU, developed pneumonia which required 4 antibiotics and DVT in the leg.
This is my diary:
Kevin had a brain bleed this morning caused by an aneurism. Craig saw him step out of the shower, grab a towel, and then fall straight backwards. I came in and didn't see him breathing. It appeared that his heart had stopped as well. Craig called the ambulance, while I gave him CPR for about 4 minutes, and then he wasn't breathing so I gave him breaths for a few more minutes. He seemed to then breathe on his own. At this stage the ambulance people took over. It took many people to lift him up, and onto the roller bed.
I called my nephew Neil, to come and help him into the ambulance. I've learned not to drive in this state, so he took Craig, Stuart and myself up to the hospital. The scan confirmed a grade 4 bleed. They weren't giving me much hope this morning about his survival, or recovery.
They then transported him to Sir Charles Gardiner hospital, heads unit, where a neurosurgeon put a plastic tube into his ventricle in the brain, to drain off blood and fluid. Ian and Gail took me down, and we had a visit from my cousin Albert, and my minister, David.
We saw him after the insertion of the drain, but they want him to sleep as much as possible, so have put him into a very deep sleep.He's been on a ventilator to breathe for him, even though he could possibly do so on his own.
I just got a call from the ICU nurse now, about 7:00pm at night, to say he woke up and looked her in the eye, and squeezed his hand on command. They then gave him more drugs to get him back to sleep. They weren't going to try for any responsiveness until tomorrow. He also responded to light before he went into surgery, so they are the little positives we've had today.
I'm so grateful I did all my CPR training when I was a dental nurse. Every doctor and nurse have questioned whether his heart actually stopped during all of this. I know it's quite dangerous to compress a beating heart. I did, and am concerned about what damage I may have done. He had some tests done, and there was no heart damage, which means he didn't have a heart attack, and I didn't do any damage either! I thought I broke a rib, but no one seems to care at this stage. I've questioned whether keeping his breathing going was the best thing to do if he ends up in a very bad way. Either way, it felt very good to be able to do something. Craig was a star on the phone the whole time with the ambulance staff.
This is a game of wait and see, and no one knows what the prognosis is. How nice to trust in God, and not worry too much about these things! I'm taking it minute by minute now.
Day 2:
I had a call in the night from the doctor that Kevin's shunt to the ventricle had blocked up with blood clots, so I let them go in and replace it. I heard many weeks later when we went to visit the ICU staff that this procedure was done at the bedside!
He said Kevin responded to many different commands, and was moving his right leg and arms. They were thrilled with his level of ability, and made the plan to go ahead in the morning with an angiogram. This catheter is passed up through the groin, and into the head, where a dye is released. The x-rays showed a confirmed aneurism, in a usual place, right between the eyes, but several centimeters into the brain. They will now perform surgery at 8:30am Saturday, May 19th. They are telling me its still very critical, but there's a 95 % chance of success. 5% die of a further burst aneurism or a stroke. If they couldn't reach the site, or it was left untreated, there's a 30% chance it would burst again in the next month, and further problems as the years go by. Because we are private patients, we get the more senior neurosurgeon.
Kevin's dad is on his way from South Africa. The doctors said that family should be called, because he's in an extremely critical condition. I've sent out lots of emails, and got responses back so quickly, especially from friends in Canada. Please keep writing, because one day I'll show Kevin all your thoughts and writings.Please send the message on to anyone that you think may be concerned for Kevin. It's times like these that we find out how many people care, and the numbers are staggering!
Sandy and Sarah are the hub of information at our Woodvale store, and I appreciate the bulk of calls going to them. When I'm home I'm pretty wiped and trying to sleep odd hours. Everyone asks how they can help, and I suppose meals are the most appreciated at this time. Friends of the kids know best what their needs are, and helping with the driving to events is a great help. I'm letting them set the pace for themselves.
The kids and I seem to be coping just fine right now. I don't think the severity of what's happened has had time to kick in yet. The odd time I get butterflies in my stomach from sheer terror. I just keep telling myself to come back to the minute.
I feel confident now that we should keep praying for complete healing for Kevin. Initially I was so scared he would be so completely incapacitated, that I didn't want him to live like that. Now I have faith that there is a real possibility for healing. He's already come so far.
The doctors just called to say they are changing the drain again tonight. There have been a lot of emergencies tonight, so that's why they've put off the surgery till tomorrow at 8:30am.
Day 3:
Kevin had his surgery from 8:30 am to 2:30pm today. They clipped the aneurism, or blister on the side of the blood vessel in his brain. The doctors said it was successful. His only complication is a chest infection, which I was told he had initially when he went to the local suburban hospital. Maybe he aspirated some vomit or fluid when he fell. This is apparently a common complaint of brain aneurisms. Also the low blood pressure, which is why I gave him CPR when maybe it was just weak and irregular.
I spent the morning going through paper and boxes of stuff. With great enthusiasm I threw out a ton of stuff. Kevin found it hard to throw out things, but I took great pleasure in doing so today. We have a spare bedroom that is full of boxes of "stuff" and I always feel bad for guests that have to sleep in that room. I gathered a box of treasury P&C things that I hope will be picked up by someone soon. Kevin gave so much to the kids primary school, but it's time to hand it over.
I paid a few bills, one of which was a life insurance policy that was two weeks overdue. They assure me we have 30 days grace. We manage our own superannuation account, and it appears he has full cover for that. He's always assured me we are both well looked after in the event of death, but what about disability? I still don't know the answer to this question, but I made sure we discussed this issue on a frequent basis. Just last week our business coach brought up the subject of business succession - this seems to be the buzz word in family business. Kevin assured him I'd get everything in the event of his death, but what about the children? And what if some of the children don't go into the business. How are they compensated if other brothers do get a share of the business? This is all food for thought, and I'll certainly pursue it in the future.
Last night I had a little pity party, and it was nice to have a quiet time to myself. Today Kevin's dad Ken, arrived from South Africa. It was quite emotional seeing him, and we held hands tightly as we went in to see Kevin after his surgery. He looks like he's wearing a very bad fitting toupe, because he's shaved at the front of the head. Just this tuff of hair at the back. His "door" opening will be hidden by his hair line. They've glued and stapled everything back in place. It was great to see him show a little sign of wakefulness. The nurse asked him to squeeze her hand and he did. Then she put his hand in mine, and said "give your wife's hand a squeeze", and he did - ever so slightly. That was a great moment!
We went back to Gail's for dinner and a couple glasses of wine.We hope to go to church tomorrow, and be with our church family who are praying so fervently. Who knows what tomorrow will bring. The nurse warned us of two steps forward and five steps backwards. He's a very sick man, and certainly not out of danger yet. I'm just grateful for today, and the joy I feel in my heart.
Thanks again for your love and prayers.'
Day 4:
I checked on Kevin in the middle of the night when I was awake, and they said they were draining fluid off of his infected chest each hour. Everything else was fine.
Gail and I went to church today, and it was so good to see my church family, and get a bit of spiritual food. I've had so many zillions of offers of help, that it's truly incredible. We then went down to visit Kevin. He was just back from having another CT scan, and was sedated for that. They brought him around a bit, and it was great to see him open his eyes and move a bit. The ventilation tube down his throat was not too popular, and he was gagging a bit on it. They watch how many breaths he gets from the tube, and how many he takes on his own. At one stage he was taking all his breaths on his own. The doctor decided to leave it in, so they can continue to suction off his lungs. This tube is a convenient method of going down in there quickly.
He squeezes your hand quite firmly, and I asked if he wanted to see his dad. He squeezed yes, so in came Ken. The nurse explained that he probably didn't understand all the words, especially the implication of his dad having come from South Africa. Maybe he's responding to a familiar voice? Yet the nurse asked him if he had a sore head and he squeezed yes. She asked if the tube was worse or the headache? He pointed to the tube! Possibly he does understand complicated questions? He got quite insistent on taking out the ventilation tube.
We had a good day, with the first experience of wakefulness.
Day 4 and 5:
Kevin-Day 4 & 5 have been combined, because they are similar days of reports, and I was too tired last night to write anything. Yesterday Stuart, Craig, Grandpa Ken and I went to see him. He looked dreadful, as he's swelling from lack of movement, and his eyes were turning black and blue. His chest infection wasn't clearing, and he had a fever. He was shallow breathing, but it started from his abdomen. They've zonked him into a deeper sleep, as even the stress Sunday of waking up and breathing quite a bit on his own, was a real physical strain. Apparently he's been given morphine again for the pain, as he nodded his head when asked if he had a headache the other day! He's on a different anaesthetic, which is much deeper and allows him more rest. They did a culture to find out which bug he had specifically. It's Staphylococcus aureus. A difficult one but one they have seen it before. His antibiotic has been changed, and today he looked so much better. His fever was down, and he was breathing completely on the ventilator, but more quietly. In a couple of days they hope to wake him up and see what he can do. It's so hard to judge now, yet we had a good indication of ability early in the piece.
The nurse tells me people come out of this very humbled, and a bit introspective. The friends I meet in the waiting room may become life long friends. Yet down the road they are more my friends, and Kevin may find it hard to relate to them. Or Kevin may get well enough to have visitors in rehab. Yet he is out of the loop, having slept through the previous months. I realized the other day how selfish I've been (that's not the right word), but I haven't had a need or desire to catch up with the others in the waiting room. I have my close family and friends around me, and I haven't needed to reach out to them. Gail has chatted to them, so they seem to know my story. One guy seemed very familiar with me, and I didn't have a clue who he was. I thought maybe he was one of the doctors I'd spoken to because he had some papers in front of him. He asked how Kevin was, etc. etc. After about 5 minutes he said he'd be praying for him. I felt like such a heel for not asking his name, his situation or what I could pray for him! It's like forgetting someone's name, and after 5 minutes thinking it's too late to ask them what it is. I just thought I was being a bit too self centered, so today I went up to another lady, Jenny and asked her how her mum was? I'm not beating myself up about this, because it is early days, but it went through my mind that I'm not the only one in this situation.
Day 10
It has been a bit of a better day. I went to church, and was so uplifted by the service and what I heard. We'd really been planning for a big change in our lives (franchisees) so had done a lot of background work to prepare the staff for our eventual removal. Sarah has been our operations manager in training for only a few weeks. We spent a couple of hours together today going through paper work. She came down to see Kevin with me. I've agreed to the doctors doing a tracheostomy, as his ventilator tube down his throat eventually causes soft tissue damage. They put a tube directly into his breathing pipe, and hopefully they can wake him up a little, and let him do some coughing on his own. He's on his third round of antibiotics, and they aren't helping his infection in the chest. If they wake him up when he's ventilated, he fights with the tube. He's been feverish for days now, and has broken out in a heat rash or a reaction to one of the drugs they're giving him. Each time he goes into an uncontrollable shake (rigors) they give him a push on the drug that paralyzes him. At least he isn't getting any worse, so it's a slow recovery.
I met an old neighbour, who was the first to send me a card. She is a nurse up at the local hospital, and heard about Kevin from the ambulance staff. Apparently they were shocked by his case. Surely they see these things all the time? It's just that it's so unexpected and he's so young. They told her how difficult it was to get to him, where he collapsed. (in the shower) and how heavy and big he was. She put two and two together, and made the connection. They rarely hear of good outcomes from this sort of case and hardly ever hear how their patients get on. I told her to tell them I had to bring home the clothes and shoes they suggested I pack! I know they told me to do this to keep me busy, but imagine my packing clothes for someone I'd just given CPR on for 8 minutes!?! Denial does amazing things to you.
I'm back to work for the most of this week. I really need to hand over to the nurses and doctors right now, as there's is very little I can do for Kevin. I can't believe all the work that the nurses do 24 hours a day. They're constantly on the move and adjusting various dials.
Please pray specifically for the healing of this chest infection.
Day 15:
My list of contacts keeps getting longer and longer. Yesterday was Kevin and my 16th wedding anniversary. I've had quite the gift! Kevin is now very alert!!!! Ken went to visit Kevin during the day, and apparently Kevin was in a lounge type chair, propped up into almost a sitting position. They took the ventilator out for 7 hours, before he started to struggle to breathe on his own, so they hooked him back up. When I got there at 6:30pm, he was back in bed. I talked to him for about 30 minutes. His facial expressions are great and this is how he communicates. A scrunching of the eyebrows shows confusion or concern, especially to comments that he's had brain surgery, been asleep for two weeks, had pneumonia, and that I'm getting pretty good on computers! He can smile at a joke, nod and shake his head etc. He seems to fully understand everything that you say to him. He could move all of his fingers and his right toes, but still no left leg. He can't lift his limbs. Apparently his muscles are already wasted, and he'll need lots of physio and rehab. He seemed to be in pain, and could let me know that it was his bottom that was sore. They're giving him morphine for the bed sores. He was trying to move his shoulder, but I couldn't help shift him anywhere. Two orderlies come every two hours to move him.
Ken said goodbye to him yesterday, but I'm sure he was pleased to see him awake and responding before he left. It was great comparing notes last night with him, to see what feats he did. It's like talking about your babies, and comparing all the movements that they do. We were like two proud mums! I'll miss Ken, but think now I'm getting ready to do things on my own. He hopes to come back in a couple of months from Zimbabwe.
I was still running around frantically yesterday paying bills. I didn't understand that credit cards and credit facilities automatically take out interest at the end of the month. Luckily Gail is watching my NAB account closely, and covering things for me. I'm getting hit with fees everywhere else, every time something goes wrong. I'll have a real understanding of all this at the end, but each day it's like putting out little fires. Things have calmed down since the first couple days, when we were putting out bush fires!
I've enjoyed being back at work, but I'm not really working in the business, still on it. Funny how our coach is getting his way after all. Kevin and I were very reluctant to let go of the reins. The staff are all communicating with each other, rather than through Kevin in the middle. They're sorting out all kinds of issues, introducing new products, changing prices etc. They're an amazing group of people, and I really appreciate their efforts.
God is good!
Day 18:
The kids and I went to visit Kevin on Saturday. I left them to stand and talk to him, while I sat down and talked to a nurse. The night before I'd had such a long conversation with him, so now it was their turn. They pretty much just looked at him, and it took 10 minutes before they said anything. It was pretty weird for them to see him with the trachea in. Kevin looked particularly tired, and didn't give many facial expressions. He was propped up and breathing on his own, with a bit of oxygen for help. It seemed to be all he could do to concentrate on breathing. Apparently Ken, Ian and Gail had popped in on their way to the airport, and then in again on the way back home. Our visit was the third for the day, and he was wiped out. It was still good for the kids to see him awake and his eyes open. The nurse said he was always wanting to look behind him, so she turned him around and showed him all the machines and what they were for. She said he understood everything.
Some friends who have been through the ICU experience with a prem. baby, reassured me that "selfcenterness", and "using people" is normal, and their friends understood. I feel like that now as I get on the phone and ask for help from whoever I think might be able to help. Life is just running a bit fast now. I had my first bit of down time on Saturday, as I came home and had a nap. Mahendra and Jenny dropped off flowers and a yummy meal, but I asked the kids not to wake me so didn't see them personally. I read a book that night, so it felt really good to just veg. for a while.
Day 21:
Kevin was moved from the ICU to the 5th floor High Dependency Unit (HDU) two days ago. It's a real graduation of sorts. The nurse said that they rarely see 4th grade bleed patients in this unit - they just don't make it this far. He could remember another case, also a young patient who's husband had given her CPR and they got to the hospital quickly, like Kevin did. My friend Kath who's a nurse is just amazed at his recovery and that he recognized her. When I went yesterday morning, he was all bandaged up on the hands, to prevent him from pulling out his feeding tube in his mouth. The nurse explained what it was, why it was there, and he nodded that he promised he wouldn't pull it out. But he did! Twice! Maybe it's the loss of short term memory, but he'd forgotten the promise he made. They explained that if he pulled out the trachea, it would be a huge problem. The trachea can come out when his cough and swallowing improve.
I went again for a visit last night because he was sleeping when I went in the morning. It was worth it, especially when he gave me a little peck on the cheek goodbye.
Yesterday was my first fun day for me. After going to the bookkeepers and working at Kardinya a bit (mostly transferring stock) I went for a haircut, a massage and out for dinner and to a movie with Kath, Tomek and Craig. We saw Shrek, which was very funny. I was given the tickets by 94.5 because we'd done some advertising with them this year. I'm starting to feel more normal now, and not like I've got continual jet lag. The emotional tiredness was overwhelming at times.
Amazingly the food keeps rolling in, and I still haven't cooked a meal. Dear friends like Karen Leggett drop groceries off at the door. That's been a real blessing, especially in the early days when I found it hard to get out for even the basics like milk and juice. Thank you to all of you who have been so kind to us.
I must go and get to work now.
Day 24:
Kevin has been pretty quite these last couple of days, since his amazing feat of writing pages of notes on Wednesday (no one could understand his garbled hand writing). I mentioned this to him on Friday, and reminded him that he wanted to sign the nurses pay slips, and he didn't remember any of it. He just looked really tired, and wasn't communicating by nodding or shaking his head.
The social worker finally got hold of me, and we had our first session. She suggested I get a note book, and leave it by his bed. Each visitor can write in it, and tell me what they saw and what Kevin did. It's a diary for both Kevin and myself. It's important that I don't feel I need to visit daily. At this stage I really want to, but there will come a time when it will all seem too hard. This is where rostering on visitors will help me know that he's being stimulated by their visit, and I'm being updated on his progress. She really wants me to have time out for myself and spend time with the kids if they need me. I told her I'm feeling really strong right now, because I'm feeling so supported. She's not surprised, because she sees this amazing thing happen with families all the time - a real pulling together of everyone. As far as visitors go, he can have a few groups per day, but only two at a time, and not between 1:00pm and 3:00pm. Maybe you could call me first (or at least try), just to make sure he's not getting 10 groups in one day. Just follow the gold lifts at the back of G Block, and go to the 5th floor. He's in the neuro ward (52), and in the HDU. (High Dependency Unit). They prefer close friends and families in this unit, but this will ease significantly once he moves out of this unit.
I've gotten a great response from everyone about the scanned picture of Kevin's letter. I'll be sure and do this more and more.
Day 26:
Yesterday was the most amazing day! Kevin had the trachea removed, and
he can now communicate really well. I was a bit concerned about his
ability to communicate, because he seemed to take everything in, but
it was a bit garbled coming out. This is not the case at all. He can
speak just as well as ever, with his usual humour and joking going on.
About 10% of what he says is completely confused. I can't relay
everything here because there were lots of conversations going on over
the three hours I spent with him yesterday. This is an example of what
he said.
-He's in the morgue, because it says so on the door.
-He went up to the next floor to see a friend of Craig's, Zak, to
see if he was okay because he heard he was in the hospital.
-A bus driver came in to tell him there were 500 kids coming from
Connolly Primary and St. John primary school to have a tour of the
hospital.
-Ron and Marla came to see him from Canada, and yesterday Marla's
dad was in the bed beside him.
These are just a few things he said, and at one stage admitted he's confused. He knows other people are saying things differently to himself, and he conveyed to me that they're trying to brainwash him into believing their version of the story.
The physiotherapists are really thrilled with his progress, and with help he can now get out of bed and into a chair. He puts some weight onto his own legs, and doesn't depend solely on the orderly. They say he'll get out of this unit when he can get in and out of bed on his own.
I pushed his chair out into the garden courtyard, but he was cold after a few minutes. We spent lots of time reading his cards and letters, and he can fully read and understand what's being said, and who wrote them. One friend, Thelma, he knew it was her birthday party on Sunday. But that was four weeks ago.
The nurses really appreciated my being there yesterday, because they were flat out with two new patients. I helped him eat, but he can for the most part eat himself. He's now on soft food, and his drinks are being thickened with a vegetable gum.
The nurse said that visitors around 4:00pm to 5:30pm were a big help, because he can do so much for himself, but he needs supervision. Given half a chance, he'll get up on his own and try to make it into bed from the chair. He insists that he can do this for himself, and that he's been doing it for weeks now. They make him sit up in a chair, because it's good for the lungs, and it's better to eat dinner this way. He's in bed by 6:30 and it's lights out for him. He wanted me to tuck him into bed last night, which was so nice for me to spend such quality time with him.The staff are not too concerned who the visitors are at this stage, but Kevin seems a bit embarrassed at the state that he's in. Rest assured that if there's anything private going on, they ask visitors to leave while they sort him out. Including me! Maybe wait until he's in the ward before visiting. This should be very soon.
The kids and I are going tonight, as they can't wait to hear him talk.
Day 27:
I waltzed into the HDU on Tuesday, to find he'd been moved into a private room. He's still on the 5th floor, in ward G52, but now in room 5. He looked pretty wiped out, and the kids and I spent time with him while he had his dinner, then we tucked him into bed at 6:30pm. He really wanted us to stay and do that for him.
That mop on the back of his head finally went! I brought my clippers and gave him an overall #2 haircut. It looks 100% better. The consultant and a group of doctors and nurses came by to see him, and they are all just so amazed at his recovery. There are now no other medical problems! He asked Kevin who the visitors were, and he said, Curly, Larry and Mo. This is what he's always called the boys. They are now just waiting for a place to become available at Shenton Park Rehab. Center.
He's still a bit confused, and when his dinner came, he said this is from the plane crash. I asked him if he meant it was one of the victims and he said yes. He'd been eating this "person" for 4 days now!
David went to visit him, and told him Gweneth had a baby today. Gweneth has older children, and will be shocked to hear of her recent arrival!
He's really switched on in other areas, and is helping me to decipher the computer problem. He wrote down the answer, and it was certainly something I could pretty much read. I didn't push him, because he thinks he'll just show me tomorrow.
All in all, another great day.
Day 29:
Just a quick message to fill you in on the latest leaps and bounds that Kevin has made. He's speaking normally now, and looking great! He gets confused just a few minutes out of a few hours. He's still convinced that the crematorium is just down the hall, that I had a loud party in the room a few doors down, and that Ansett is aware of spare body parts being used to feed the passengers. This all hit the news the last time he was in London! He can remember discussing these things, and picks up where the story was left off. People are writing in the "blah blah" book when they visit him. I like Paul's comment about how the X Files writers will want to get hold of his story lines!
He's waiting on a bed at Shenton Park Rehab. which should take a week, but people have been known to wait two months. A few weeks of rehab. should be enough to teach him how to walk again. His left leg moves, but is very lazy and weak. Remember how we didn't see it move for three weeks!
Kevin mentioned that he wouldn't be moved until his blood condition improves. I asked the doctor about this, and he confirmed that he had a DVT a couple of weeks ago, and he was on blood thinners. Kevin says they found 4 blood clots, but I don't know what to believe? I knew he was on a blood thinning drug (rat poison as Gina calls it, which it is apparently) but had never heard of the blood clot. Now I'm getting confused! I hope this doesn't mean he won't be able to fly in the future? He says he's going to Trisakti University in Indonesia, to teach, in four weeks. I haven't asked this question yet, about future travel, but for today I'm just glad he's alive. There will be changes and disappointments to come I'm sure.
I was feeling a bit scared yesterday about all the paper work piling up and month end and year end coming up so quickly. Gina came (she's a MYOB support person) and we made sense of most of it. I know who and what to pay, as confirmed from the accounting system. I'm going into work today to learn more about receipting invoices, but now know that Gina and the other staff are there in the future, when Sarah's on her month's holiday.
We're having a staff meeting today at home today. Russell will help me rally the troops together, and find out what issues they've been having. I've really just let them get on with it, while I've been so busy trying to get the finances and paperwork together. Kevin gave me lots of advice on the handling of accounts and our personal dealings with banks etc. He really wants to proceed with the franchising idea. We'll just wait and see, but a full recovery is now very realistic.
I've got a full day on, and won't get to the hospital. He's getting a few visitors now, which he seems to enjoy. On the weekend he says the workouts and therapy have slowed down. More time for catching up with friends and family.
Week 5:
Kevin is now in Shenton Park Rehab Hospital, very close to Royal Perth Hospital. He's in Ward 1, with 6 patients in the room. He never sleeps at the best of times, but he's going to suffer in this environment. They give him sleeping tablets and pain killers anyway, because his hips get sore in the night. It's a horrible old place, but apparently the best facility around. The care seems very good, and the doctors, physio, O.T. and speech pathologists will assess him today. They will call a family meeting, and give us the game plan.
He's by far the best functioning person in the room. Everyone there has had a brain injury. The little nurses laughed when they got him to stand up. He just cleared the door by millimeters, as it's such an old building. He has physio booked every day for one hour at 11:00am. He's really hating the hospital food, so any treats would be very much appreciated
I've still only cooked two meals in 35 days! Now more than ever I'm finding I'm running ragged, and really do appreciate all the help. Gina, Bill and I have still not been able to find some computer data that will help us find out how the businesses are really going. I'm starting to despair about that, but one step into Shenton Park makes me realize I have nothing to complain about.
It's a big move forward for Kevin, and we continue to be amazed at his recovery.
Day 39:
The following letter is from Kevin. Imagine my surprise on Friday night when I went for a visit, and he said the nurse told him he might be able to go home. Very sheepishly I walked down the hall, and told the nurse what Kevin had said, thinking this was another "story." She said he could in fact go home for the weekend, as rehab is all about getting the patient to do as much as possible for themselves. All the physio's etc. are off for the weekend, and as many patients as possible go home. Even knowing he could go home, he just lay there. This was an omen for the weekend ahead. He describes it as a continual comparing of the alternatives available to him. Even though he wanted to get up and go home, he was comfy in bed. Friday night he watched TV, and I was so tired that I went to bed. He told me later that he struggled to get up from the couch, as his hips were lower than his knees. I asked him why he didn't just sleep there, and he said he knew I had to evaluate him, and he didn't want a bad score! Oh, the feeling of power that I have!
The next morning he wanted to get in the spa. It was a real question of should we or shouldn't we? We had an enjoyable hour soaking with Craig, having a real cappucino. Then the dilemma of getting out. He'd get halfway out, and I'd dry him off, then it would all get too hard, and he'd slip back into the warm water. After an hour of this, I gave him a deadline, or I'd call his brother. Ian and Neil came over, but Kevin got out in about two minutes. He can do these things but he has to have a real good reason for doing them.
Saturday night we went to a church fund raiser which was a dinner with a piano concert. When I ordered a couple extra tickets the night before, Gweneth called back and asked what kind of music Kevin liked. He loves musicals, and his favorite is West Side Story. The next night Derek Wood played several songs from this musical for Kevin. It was pretty emotional for me.
Sunday I took Kevin back for a blood test, then we picked up the older two from a flying camp with the Air Cadets. Kevin just relaxed and watched TV in the afternoon. We had dinner at the table, which is what they really want him to do. Sit up properly when eating, and not eat in bed. He found the noise of the kids and their fighting very disconcerting. Then I took him back for his 8:00pm check in.
These weekends are hard work for everyone. It's good for the patient because they realize they are not ready to be home yet. They'll send an O.T. to the home to install some rails to help him get up from the bed, couch, shower etc.
I'm so glad it all came as a surprise to both of us, because then we didn't have any expectations for the weekend. I found it was my first weekend at home relaxing, and I spent a great deal of time napping. I couldn't believe how tired I felt. I guess you can only run on adrenalin for so long.
We still haven't had our family meeting, but once Kevin is released, he'll have outpatient care. He has to be mobile enough and strong enough to get down to the center every day.
Kevin's letter "from the other side"
I must first apologise for any typos or other errors on this E Mail, but I am finding typing as difficult as writing.
I have finally made it home (if only for a couple of days) of R&R from the hospital.
I must also thank you all for your kind support. Cindy had mentioned to me how much support she has been getting, though I don't think I realise quite how much until I read all the E Mails for the last two months. Thank goodness for E Mail. I hate to think how much postage would have cost (45cents local, $1.10 overses) if all that had to go by snail mail. It would also not have been quite so timely.
Well I do not remember much about the first few weeks in the hospital. Though I do appreciate that I was a bit confused - though I think at times Cindy was trying to keep on top of me by deliberatley giving me information that was not terribly accurate.
I will say that after an analysis this morning, all my stories had some link to them. ie my mind was busy picking up all this information and sounds and putting them into some sort of story that satisfied my thought process.
The story that had to do with 500 kids on an excursion to the hospital had something to do with Craig going on a school trip and the kids coming to visit me in the hospital.
I feel that I was very well treated in the hospital. The staff were all very concerned and helpful if you needed or wanted things done - though sometimes they were a bit slow to respond to the bell. The papers keep talking about the crisis in the hospitals, though this was not obvious to me.
I did have a battle with the nurses from time to time - though I discovered that if you play their game things move along a lot quicker. I seemed to be drinking a lot of water every day - sometimes up to 8 litres. They were a bit concerned about this because of the effect that it amy have on my electrolytes etc, so I had to then have an input output chart organised. This meant that I had to account for every drink that I had. I also had to pee in a bottle so that they could make sure that the water was not being retained. In fact some nights, when I asked for more water, I was refused. They then started to give me water when I threatened to get out of bed and go to the sink to fill the jug.
As for the output, I could tell they were getting a bit miffed when they were called three or four times in the night to empty the bottle. Anyway, that is all over for now!!
I must say that being at home is a lot more work being at home than in the hospital. Cindy has been great, but the furniture is a bit low for me to get out of, so I can sit for a while knowing that the spirit is willing, but the body will not comply. It took me more that an hour to get out of the spa this moring - only because it was so cold that every time I got half way out, I got cold and decided that the spa was better place to be. What forced me out is Cindy calling my brother to come and help. I was out before they got here!!!
I have not had an opportunity to go into the shops yet, but listening to all the effort that has been put in by various people, I should not worry too much. I know that I am going to have to make a move soon as financial year end in Asutralia is June 30. This means getting stocktakes and the like done and getting staff their group certificates done. This is not a difficult task, just tedious.
Well after all this my darling wife now has my lunch ready, so will finish off.
Once agin thanks for all your support through this.
Kind regards
Kevin
Day 41:
I'd hate to be the nurse that authorized Kevin to come home. The doctor said she'd never have sent Kevin home without first assessing the house, and at least talking to me about the preparations I'd have to make for his arrival. They're sending an O.T. to the house before the next home visit, to think about installing hand rails. Apparently Kevin has pulled some muscles in his thigh and chest from all his heaving around the house. We both agree that we were happy to not have had any preconceived ideas about the weekend, and springing it on us was quite acceptable to us. He was tired on the Monday! Apparently now they want him to give up walking with the stick. Once he's up he's quite fine, but getting up is a battle.
Kevin's 2nd weekend home from rehab.:
Thanks to those that replied to my last E Mail. I think that I did a little more than I should have last weekend as I struggled with the physio all week due to strained muscles in my good leg.
Anyway, the second weekend has been much more relaxing and no SPA. It is good to be back in the home environment, though this chopping and changing beds is getting a little tiresome. It always takes me a few days to get used to a new sleeping environment. I am hoping that I have only a week or so more in the rehab hospital. I have noticed that they are releasing people who, in my opinion, are in worse condition than I.
However I cannot complain about the nursing care and attention that we receive in the place. The hospital system here in WA now works on the basis of nursing staff being employed by agencies and the hospital contracting the duties out. This means that we don't often see the same staff for more than a couple of days. This is difficult for all concerned as the staff have to catch up quickly on the condition of the patients. This then means that we are answering the same questions every couple of days.
My favourite part of the therapy is the hydro pool, which I do twice a week. This is a full sized, heated pool, in which it is quite comfortable to just float around and to stretch the legs and arms. Unfortunately our own pool is far too cold for me to get into, let alone spend 1/2 an hour stretching.
We watched Regarding Henry, starring Harrison Ford, today. The story is about a lawyer who gets shot in the head and loses a lot of his memory and brain function. Many parts of the movie rang true for Cindy and I. If you are looking for a movie to rent, try that.
Well I must go now as I have to check back into the hospital after the weekend break.
Cindy's version weekend home:
Kevin came home for his second weekend break. This time seemed to go a lot better for him, and he didn't have very much trouble getting up at all. We still haven't had our family meeting with all of his caregivers, or any visits to our home to check things out. He did come home with cushions and bed rails, and even a wheelchair in case we did any outings which required lots of walking.
It was year end on Saturday, and I'd been working very hard this week getting each computer up to date on stock transfers, product losses etc. so that the transfer of data from the till to the computer would be acceptable, and the stock levels correct. Kevin came in to two of the shops for a few hours on the way home from having blood taken to test his blood clotting factors. He gave us so much help in those few hours!
Aside from those visits, we just relaxed over the weekend and had a couple groups of visitors. As usual, Kevin didn't sleep much Saturday night. Apparently just a few hours, which is how it was for a year leading up to his collapse. In the morning I could hear him do that weird breathing, that he did as I gave him respirations after I got his heart going way back when he collapsed. It sounds different to snoring, so my ears perked up and I listened closely. He then didn't take a breath for a few seconds, so I listened even more. In the space of ten minutes, he stopped breathing about five times. Mostly just for five or six seconds, but when I counted to 10 I leaned over him. He immediately woke up and said that I scared him! Well he scared me!
I mentioned this to the duty nurse, and a doctor will probably call me. I don't know much about sleep apnea, which is what she called it. She said it isn't normal. Other than that, Kevin had a great weekend, and it was reasonably quiet as two of the kids went to a sleep over, and Stuart went out quite a bit.
Our friends from Canada, Chris and Janice, are coming on Tuesday. Kevin is hoping to get a day pass, so we can pick them up from the airport.
Kevin can hardly stand the smell of food, and I can understand that when looking at his hospital food. Things didn't improve much at home, but he really enjoyed Mahendra and Jenny's Thai food.I mostly got takeaways this weekend, as I waited to see what he felt like having, and he usually said nothing. It's terrible to see how much weight he's lost. Unfortunately it isn't where he needs it, but more from his arms, legs and face.
We got to hear all the funny stories about the other patients, as seen through the eyes of some of Kevin's visitors. There's the lady who keeps taking her top off, the lady who climbs into the wrong bed, and the lady who cried for 10 minutes when Keith didn't help her get into bed.
Kevin definitely seems the best out of the lot, and his confusion has been gone for weeks now. He is really very mobile, and doesn't find it too hard getting up at all. I hope this breathing problem isn't too big of a deal.
Week 7:
I haven't written for a couple of weeks. It's been nice having a break from my diary writing, as things have been even more hectic at home now that Kevin's home for good. Yes, he only stayed in rehab. for about two or three weeks. I had my first and only family meeting (with Kevin included) on the day of his release.
The doctor says he's in a stable phase of recovery, but there are ongoing issues that need followup. They found a DVT in his leg that will need warfrin for three months. He goes a couple times a week for a blood test to check his blood clotting factores. A sleep study is not urgent, and they'll try to see how long it is to wait before he can go in as a public patient. Otherwise we can organize something privately ourselves. A study would confirm if the apnea was caused by an obstuction such as large tonsils, lying on his back etc. or some other reason? I've not noticed any more periods of Kevin stopping breathing.
His O.T. gave her report and said that his cognitive skills are great. His problems are physical due to the long period of inactivity.
The phsio said he'd made great improvements with his endurance, but his cardio needs fine tuning. High level balance issues are what he's working on now. He's going twice a week to physio down at Shenton Park, but will soon move to a community set up in Wanneroo. Joondalup Hospital refuses to take him because of his head injuries, but he really doesn't need the expertise of a specialist neuro-phyiotherapist.
Everyone that sees him is surprised at how normal he looks and acts, and they're so excited to see him alive! He doesn't understand what all the fuss is about, and how much people have been concerned about him.
It's been great having his help at work, and he does some computer work quietly in the back room. We're trying to get PC Anywhere up and running properly, so he can sit at home and access all the stores computers. It's stressful being in the busy shop atmosphere with the phone ringing and staff asking him questions.
Thanks to all of you on this support page for your accounts of your own or your loved ones experiences. We really do help each other. I especially like reading the stories from several years ago, as I can read your updates.
The message I've learned is that this could be a very slow recovery, and that things like depression and lack of motivation are very real and consistent emotions for most survivors of this terrible illness. It makes me want to go very slow with Kevin and not put too much pressure on him.