WELCOME HOME JAKE! |
115 DAYS!
| The power chair was delivered, with Jake in it, Wednesday evening around 6:00 p.m. The chair had to go into the "garage" since we don't have our ramp yet. Jake was transferred to his manual chair. |
| Jake immediately started entertaining his friends. :)))) |
| Terri has improvised an "intercom" system for Jake to communicate with us at night. He is downstairs, and we are upstairs. We have found, by trial and error, that cordless intercom systems do not work in our house. We have tried quite a few over the years, with no success. Well, Terri set Jake up with our backdoor doorbell, and she put the receiver part in her bedroom. So a couple times during the night I can hear the doorbell. :) |
| I was concerned that my early morning hours would disturb Jake since there is only a curtain between the kitchen and his bedroom. He reassured me that he didn't even hear me at 3:30 this a.m. (Thursday). That made me feel better. |
| early Saturday morning, November 4, 2000 - day 118 |
| This has been an exhausting week. Jake seems to be settling in ok. This is an intense learning process for all of us, but mostly for Terri. God made her strong for a reason. There are not many people who could handle her situation as well as she is. |
| If we had been ready for Jake - the ramp done, the house in order (oxymoron in this house) - so we could focus on his needs, and ours, I think this transition would have started easier. |
| At least Jake got out of bed yesterday (Friday). On Thursday he didn't. I can't remember why. Boy, if the days swam by earlier, they are streaming by now. |
| Yesterday, after I got home from work I ranged Jake. Then I wanted to take him outside, but couldn't get out the front door - they are pouring cement - and the back door cannot open wide enough to get him through - we could have lifted him down the steps in his manual chair. The power chair probably could have fit through the back door, but then we have 3 steps to deal with. (Friday Terri and Dave got the power chair into the house by improvising with wood planks). In the end it didn't matter because there was a large truck in our driveway, and I would not have been able to maneuver the chair around it because of cement blocks and wood planking in the yard. So in the end he would have gotten a 6-8 foot ride and his view would have been the house on one side and bushes on the other. We stayed inside. |
| As I mentioned earlier, they poured cement today. They also blocked off one of my basement windows because the ramp will be right in front of it. That meant total dust, mess and rearranging items in the basement. |
| Then Dave decided that he would tear down one of the closets in my old computer room (this is the room that will be Jake's bathroom eventually - the room right off of Jake's new bedroom). I have two closets that are on either side of the back door. Well, he took down the closet on the left, which will allow us to open the back door all the way to the wall, which will allow us to get Jake's manual chair out the door. Did I mention that I live in a very old house? Did I mention that the walls in that room are some sort of plaster-concrete mixture? Mess city! |
| All the while we are trying to stay a little ahead of Dave. Everything in those closets had to be moved - somewhere. Everything in the fruit cellar below that room needs to be moved - somewhere - so Dave can put pipes in for Jake's bathroom. We are doing that a little at a time because we have no reason to believe that Jake will be getting a bathroom in the near future. |
| In the meantime, Jake needed care. His a.m. daily cares are taking twice as long as they were in the hospital because of the learning curve, and different equipment. Clothes needed to be washed. Supper. Terri had items to sew for her client. |
| Jake's ADD makes it a little tougher for Jake, and us. He was not content to sit and watch us. He was constantly calling one of us to talk to him, rub his shoulders, scratch his face, cover him, give him water (I learned how to do that on Friday) - you name it, he thought of it. (now some people will not understand attention deficit disorder/hyperactivity. To them it is a "discipline" problem. To these ignorant people I can only say, I hope it happens to someone you love). I was exhausted by the time I went to bed. But I knew I'd be able to sleep all night. Terri is past exhaustion, and she is on 24 hour duty. She also has about a foot of paperwork that she needs to accomplish - soon. There is so much to think of, so much to co-ordinate. |
| Terri says she might go to work for a while today. I told her to go, she needs a break, and she also needs to work. She also needs to sit down. I don't think she has for the past 3 days. |
| Last night Terri says Jake called her 3X. I guess I just dreamt that it was every 30 minutes. Now I'm hearing doorbells in my sleep. ;) |
| We have to figure out some simple motions that Jake can do to exercise his biceps. I hung a small stuffed Packer doll in the doorway that he must hit every time he goes by. Well, he rolled his eyes at me, but he did it. :) At Froedtert they have a simple contraption - a half of a hula hoop that is attached to a long board. There are light, plastic items strung on the hula hoop that Jake must move from one side to the other. Great exercise for his biceps. I'm also hoping we can hang something from above his bed so he can learn to move himself for pressure releases; or just to exercise. |
| Monday, November 6, 2000 - day 120 |
| We had some beautiful people here over the weekend. On Saturday they worked way past nightfall getting the ramp built. They were from AAL/St. Matthew's church in Oconomowoc. Some of their children came to help too. Wonderful, sharing people. |
| We took Jake outside for about 5 minutes in the manual chair. Then he wanted to go back in. He still prefers to lay way back in the chair. He can speak better, and breathe better. Also in the manual chair he tilts forward. He hasn't learned to hold himself erect yet. |
| On Sunday afternoon those wonderful people returned, and the bottom part of the ramp was finished. The railing still needs to be installed, but at least Jake can get out of the house now in his power chair. |
| Amanda, one of Jake's friends, visited both Saturday and Sunday. That cheered him up. |
| Our house is slowly getting organized - at least Jake can maneuver into Terri's sewing room now. He was stuck in his room because of all the clutter. |
| The weekend went a little better than the first few days. We are starting to get a little more comfortable with everything. Lots to learn though. We ran out of Jake's food (pro-balance liquid stuff). We assumed the pharmacy would deliver on a regular basis. Well, we must order everything we need, as we need it, including Jake's food, meds and supplies. Terri had to make a quick trip to a drug store and pick up some generic "ensure". |
| Jake was feeling poorly yesterday. Very cold, but sweaty. It is so weird, but he was sweating profusely on his forehead, but only on the left side. His teeth were chattering at the same time, but as far as I know, he wasn't running a high temp. This was off and on - not all day. He sure wasn't happy when Terri transferred him to his chair. He wanted to stay in bed. Terri told him that he would never stay in bed all day, no matter how sick he was. Well, he knew she meant it - we don't use that word "never" too often. :) |
| Today he and Terri went to Froedtert in the hospital van for his first session of out patient therapy. They just got home (5:30 p.m.) and he is miserable. He is wet (raining out), cold, hungry and his neck hurts. Seems the road the van took is under construction and they hit a lot of bumps. |
| They think he has another UTI because of the sweating and nausea. I don't understand how. He has only been off all those antibiotics since Monday or Tuesday. |
| Monday, November 13th - Happy birthday Laura! I have decided to post a weekly report, and add to it as time allows. Please press the "refresh" or "reload" button on your browser if you visit more than once so you will see the latest entry. Hopefully this will inspire me to sit down for a minute or two every day and report on the daily happenings. |
| Sunday Jake supported himself on his arms/hands in his bed. He does not have an exercise mat so we had to use the bed. He wanted to show Klaas and Sue, his Big Brother/Big Sister, what he could do. If you recall, one of the first pictures that I posted was of Jake supporting himself in this position. It is much easier for him now, though still on the difficult side. He needs to be able to swing his arms/hands around behind him, and the bed, being so soft, makes that difficult. |
| Terri has taped the doorbell to the bed; we've had no more incidents of falling doorbells. Every once in a while, if Jake is in his chair, she will affix the doorbell to Jake's wrist. |
| Wednesday, Nov 15, 2000 Jake is being tutored 3 times a week, for 1-1/2 hours each day. He is enjoying this very much. This is on Tues, Wed and Thurs. |
| On Monday and Friday he goes to Froedtert for 3 hours of rehab. A van picks him up and brings him home. He does NOT enjoy the ride - it is bumpy and it hurts his neck. He likes the drivers - they are nice people. It's just the actual ride that he does not look forward too. Also getting out of our house. The ramp is usable - in fact it's beautiful! But we still need to fix the threshold going out the front door. It is a huge bump and he dreads that. (we are working on that - it's a top priority, but so are about 30 other things :). |
| Another top priority has got to be a shower for Jake. Bed baths just aren't doing it. I think he would feel much better if he could shower. Of course, he doesn't want to shower. He is afraid that water will get into his tracheostomy (still not closed up) and the drainage hole from the fistula. He's afraid he will drown. He's afraid that water will go into his lungs. The aides at Froedtert used to tease him that they wouldn't let him drown twice. (referring to his accident) |
| Today we found out that Jake will be having another surgery in 2-3 weeks. It's about a four hour surgery, involving his esophagus, and he will be an inpatient for about a week. It will involve a graft from his chest (this info is from him - don't know how correct it is). I know little more about this, hopefully Terri can fill me in soon and I can then post information here. |
| Karen, thank you, again... for everything, but mostly for your prayers. How lucky can a person be - to have a friend like you. :) |
| Thursday, Nov 16, 2000 A few nights ago Jake had a dysreflexia incident. Almost ended up in our local ER. He developed a pounding headache and was sweating profusely. Terri discovered that his Foley catheter was clogged. She was able to clear it, and he immediately began producing urine. Lots of urine. His headache cleared; he finally slept. The next day he told me he almost didn't call her. He didn't want to bother her about a little headache - but it kept getting worse and worse. |
| I'm jumping back and forth because I'm remembering incidents that have happened in the past week or so. It's so much easier to just add on to this weekly update. Of course, I need to turn on my computer, which doesn't happen every day. :) |
| Today we are going to work on his signature. He needs to sign some papers, and he is so worried about his ability to do this that he insists on signing with an X. I, on the other hand, am adamant that he learn to sign his name. He can read; he could write. He just has to re-learn the writing part. There is nothing wrong with signing with an X if you do not know how to write. He does. |
| Monday, November 20th Jake is settling in very well... almost too well. He seems to spend the majority of his days laying as far back in his chair as he dare go (without Terri hollering at him) and is very annoyed if Terri or I even mention that he should sit up more. He wants to be ranged "later". So I told him, when you feel like it, call me. He doesn't call me. I'm worn out from arguing with him; I'm just letting him be. I guess when he's ready to get better he'll let me know. |
| He goes to Froedtert for therapy on Mon. and Fri. He has a tutor on Tues, Wed and Thurs. for 1-1/2 hours each day. He enjoys these activities very much... as long as he can sit way back in his chair. I don't know how he does at Froedtert. I can't imagine the PT people letting Jake get away with laying back in his chair all the time. |
| He is probably going to have his surgery on Dec 21st. That is the first 4-hour slot that the ENT doc has open. We are hoping that there might be a cancellation. They are going to do a graft from his stomach muscle to his esophagus. He will have to contend with a tube through his nose for about a week; they do not even want swallowing during sleep. Then he will still not be able to swallow anything for about a month. |
| I think it is 3 months now that he has not swallowed anything, but I'll check back to be sure. In fact, I think I'll go back and tally all his surgeries. |
| The ENT doc says Jake has an autonomic nervous disorder due to his injury which is hindering the healing of his esophagus. When Jake found out that they were going to graft stomach "muscle" he was a little relieved. It seems he was worried about a "skin" graft - and having a hairy esophagus. :) |
| Friday, 11-24-00 Not much to report. Jake's surgery is on Dec 21st, for sure. |
| Terri and I took Jake to the dentist on Wednesday. Major undertaking. We hadn't transferred him from chair to car for quite a while, and it seemed that we had to learn all over again. He's so darn tall! And we think he's gained some weight. It's hard to get him into the car without bumping his head. He was in his manual chair (had to dust it off first) for a few minutes, and wow, he survived! |
| Jake spends most of his day horizontal, watching TV. If I comment on it, he says I'm rude. So I stay away from his room when I'm home. He has the doorbell to call me if he needs something... like changing the channel or covering him with more sheets. |
| The last two days he has asked me to range him, so I complied. I like to range him - I get exercise too! |
| Our Thanksgiving dinner... wasn't. We plan on a huge turkey dinner in about 2-3 months. :) |
| Monday, Nov 27 Terri found a TV remote control that does not have a numeric pad, but has rather large up and down buttons. She put Velcro on the back, and attached it to a piece of plastic that Jake can hold in his hand, sort of upside down "U" shape. First Jake tried it with his computer brace, but had more luck using his thumb. He was thrilled to think he could turn channels. Not so much because he can zap the commercials, but because he just didn't think he could ever do that again. |
| I reminded him that Jason drives his own van, and Mike is living on-campus at UW-Madison, and they both have similar or higher level injuries. He says he knows that, but he didn't think that he'd ever be able to do much more than he's doing now. |
| We talk about what he will be doing in the future, and what he will learn, but he doesn't believe that it will happen to him. |
| He asked me to range him yesterday, and of course, I complied. As mentioned previously, I enjoy ranging him. And he feels tons better afterwards. He is starting to range his arms/shoulders a little; as much as he can. But his legs are beyond his capabilities. He will move his arms out, and to his side, then let them hang by his side. He moves his wrists up and down, but he usually has his braces on so that exercise doesn't get done as often. |
| He is starting to sit up a little more than before. That is encouraging. |
| Saturday night Terri had to change his Foley again. At least we caught it before Jake had another dysreflexia incident. She has never been taught how to irrigate the Foley, so she must change it. Tomorrow a nurse is supposed to come to the house and teach Terri Foley maintenance. |
| Today Jake is at Froedtert, for 3 hours of therapy. |
| Wednesday, Nov 29th - happy birthday, Kris! Today Jake had an appointment with his doc at Froedtert. He has gained weight! He now weighs 121#. I guess they weigh him in his chair - his chair weighs 301.2#. |
| Jake has been getting 8 cans of ProBalance (sort of like Ensure) each day. With that, we've been giving him the equivalent of 4 cans of water/juice. Now the doc wants us to give Jake equal amounts of food and water. Well, for lunch I started doing that, and he is FULL. The doc thinks it will help with his urinary tract problems. Terri has had to change his Foley much more than normal. But now she has learned how to irrigate it, so hopefully, between the increase in liquids, plus the irrigating, Jake will not get any more dysreflexia incidents. |
| Yesterday was a beautiful day. (today it's snow/rain/damp). I told Jake I wanted to go for a walk to the end of the block and back. Well, he said "later". I said "no, now". Well, it took threats and coaxing but I got him outside. He wanted to stay on the ramp. I wanted to walk. I won. I kept telling him that if the cracks in the sidewalk hurt him too much, we would go the other way. He took the first one; it was ok. Well, every crack seemed to be "ok". It wasn't as bad as he thought it would be. |
| We got to the corner and he just wanted to sit there. He was able to see his cousin's house - he practically lived there when he wasn't home. Then he said "thank you gramma". Of course, I knew what he meant. Getting him moving is tougher than pulling teeth, but once he's active, he is very happy. |
| His friends come to visit often. He has a lot of friends. I never realized just how many until he came home from the hospital. I wonder if his friends realize just how much those visits mean to Jake. |