| Sunday, August 5th Last Thursday Jake and Dave went to a Brewers game. They had a wonderful time. This was Dave's first opportunity to be Jake's main, and only, caregiver and he did a great job. The first time is always the hardest because you aren't really sure of your responsibilities and if you will be able to do them. And no one else is there to take over - it's all yours. :) |
| Jake does an outstanding job in directing his cares, but he has a tendency to 'forget' some of his responsibilities. He must pay attention to time in regards to his meds, pressure-releases, food, emptying the Foley bag, etc. But sometimes he gets involved in something and forgets. This usually results in dysreflexia - sweating on forehead/shoulders and/or headache, or dizziness. He is getting better at this. |
| On Friday Terri, Jake and I went to the State Fair. We had a good time. It was very hot, but not extremely humid. We were grateful for that. We attempted to view the exhibits in the indoor buildings but soon discovered that peoples' level of tolerance in regards to a wheelchair rises and lowers in direct relationship to their personal inconvenience. In other words, they were not happy with Jake. So we stayed outside. We had a very enjoyable day. |
| Terri has discovered sweat on the back of one of Jake's knees, and on his lower back. I don't know the significance of this. As reported previously, since the accident he has only produced sweat on his shoulders and above. Of course, we are living in 90-100 degree days with a dew point in the mid 70's. Even a rock would sweat in that heat. |
| If I tweak one of Jake's toes he can feel something. He can tell me (with a question in his voice so he may be guessing) that it is the left or right foot, but he can't pinpoint the toe. |
| Jake is still NPO (nothing by mouth). He did manage to talk Terri into letting him eat a couple bites of Wisconsin State Fair cream puff. You can't go to the fair and not get a cream puff. :) That seemed to go down ok but when he took a little water to wash the cream down, his neck hole got wet. |
| Today, if the weather cooperates and the dew point stays in the 60's, we are going to the zoo. Jake is looking forward to that. He has had a very active week. :) |
| Sunday, August 12th On Friday we headed for the Marcus Amphitheatre to see James Taylor in concert. Marcus has ample wheelchair seating. We are allowed to purchase one regular seating for each wheelchair seating we buy. Then they attempt to place the rest of the party as near as possible. Kris and Mark came along. Mark sat with Jake, and Terri, Kris and I sat directly in front of them. It turned out well. |
| Jake had his first taste of an adult concert and he had an awesome time. James Taylor is an outstanding performer. |
| The only 'issue' was at 9:00 p.m. when we discovered that we had forgotten Jake's meds. The baclafen was the important drug, and it was at home. Jake's spasms increased, but he was ok. We didn't get home until around midnight. |
| Before the concert we had a picnic at McKinley Marina (on Lake Michigan). Jake didn't like the grass as it had many bumps in it. (bumps set off his spasms - just about anything sets them off). But the area has many cement walkways that are accessible to wheelchairs. We want to go back - with cameras. |
| Jake's 3 week NPO status ends today. He has cheated a little - believe it or not, mainly sour pickles! Very little liquid has gone past his lips as that seems to be the main problem. Solid food that he chews well seem to bypass that hole but water/liquid seeps through. |
| Jake's PT at Froedtert is coming to an end. We knew it wouldn't last forever but we are disappointed none the less. He still can't transfer himself. PT thought he would be able to, but I guess not. Maybe the Courage center in Minnesota can help Jake learn to transfer. |
| Sunday, August19th Last Friday night Jake again ventured to the Marcus Amphitheatre. This time he and Dave saw John Mellencamp. Both of them had a great time. |
| It was a fairly uneventful week other than the concert. Jake's spasms are still causing problems. He sees the sci Doc soon to discuss that. |
| The swallow study is still on for this Wednesday. Terri said it's too
hard to schedule one so she doesn't want to cancel or postpone it. Wednesday
will also be Jake's last PT session. :( I am going to have to figure out a way to transfer him (to his mat) so I can help him with his exercises when I get home from work on week days. I have severe arthritis in my wrists/hands - I can't get a good grip on anything and I am so afraid that I will drop him. You know, we tease him that we'll use the Hoyer that's in the garage, but that may be my solution. |
| The trip to Minnesota and the Courage Center is still on for August 30-31st. Kathie and Larry are going with them. I'm staying home due to work obligations. |
| Dave and Terri have been planning a "work-out" area for Jake. They are thinking of raising the floor in the garage and putting a wall where the garage door was. Then Jake will be able to wheel right into the room - it will be level with the rest of the house. (no steps). There is no heat out there so that will probably be the biggest challenge. |
| Let's hope that this is a quiet week. |
| Wednesday, August 22nd Jake aced the swallow study today! The technician said he could not detect any tears or seepage in Jake's esophagus. We are going to go slow this time, and wait until the ENT doc calls us. Jake's g-tube was also changed. The technician noticed blood seepage during the replacement - he suggested we consult with a GI doc. |
| Tuesday, August 28th Between work commitments and a not-so-great new computer, I'm lucky to be only a couple days behind. To go off topic for one second - a word of advice. When you buy your next computer go to Dell, or Gateway - don't buy locally. Usually buying local is a good idea, but not for computers. Milwaukee PC is definitely not top quality. I made a big mistake. |
| Jake has been experiencing frequent episodes of dysreflexia. It's getting pretty bad. We have come to the conclusion that he has bladder stones and/or a UTI again. Terri took a urine specimen to our local hospital today for cultures. Terri and Jake have had many bad nights lately - not much sleep. Terri thinks that because he's back to NPO that he hasn't been getting enough fluids. His Foley/urine is dark and sludgy. |
| Jake's neck is leaking again. Even though the ENT doc said Jake could eat again, all he's eaten is soft foods, and very little of that. He swallowed a few pills the other day. Mostly everything is still going through the g-tube - pills, food, water. He's had a little pasta - that's about it. (no sour pickles :) |
| I have some good news. Jake was given a manual chair. The kind man who gave the chair to Jake had regained the use of his legs and was going to sell the chair. But instead he gave it to Jake. It is beautiful and it fits him. He is very excited, and so am I. He is also pooped! We went for a short walk/ride on Sunday. He made it to the corner before he asked me to push him. I think we'll have to walk often to build up his arm muscles. PT person says the main reason Jake can't transfer himself yet is because his shoulder muscles are too weak. |
| PT person also said that PT was stopped because of Jake's spasms. PT can't work with Jake if he is constantly spasming. Jake saw the Sci doc last week and he put Jake on Zanoflex. Now Jake is on a daily dose of baclafen, valium and Zanoflex. We are hoping that if the spasms abate that he will be allowed to return to PT. He needs that support - both physically and mentally. |
| I attempted to transfer Jake on Sunday. If his life depended on it, I could do it. But I ended up getting the Hoyer lift out. Terri hasn't used it yet, so we decided to give it a try. Jake was very nervous, and it took a very long time. It also took two people, which defeats my purpose. I want to be able to come home from work and transfer Jake to his manual chair and/or the exercise table so we can build up the few muscles that are working. We also need to build up his muscles so he can have tendon transfers. We were told he isn't strong enough yet. |
| We bought some new furniture. We have a sofa and a chair in our 'living room' now. Jake asked Terri to put him on the sofa so she did. He loved it. He grinned from ear to ear. Said he felt almost 'normal'. That's sad. I took some pics and will try to post them soon. I still have a lot of pics from the PT session a while ago. It's a time-computer factor. Either I don't have the time, or I don't have a computer. :) |
| They leave for Minnesota and the Courage Center on Thursday morning. Jake is very excited about this. With a large amount of luck he may get accepted, and be able to attend in the next few months. This will be paid for by Title 19 (state aid) and since this is a different state (we live in Wisconsin) the paper work is horrendous. |
| Terri put a small dent in the door of the van. She was in the Froedtert parking structure and cut too close to one of the cement stanchions. We were extremely worried that we would not be able to get Jake out of the van as it was the side door that got hit. It took some coaxing but we got the door open. Really put a bummer into Terri's day. :( |
| Jake tips the scales at 150# now. This is a weight gain of 46 pounds in one year because if you recall he was down to an alarming 104# last August. He realizes that he must watch this closely. The liquid that he has consumed in the past year is very high in calories and fat, along with a ton of vitamins and minerals. He's cut himself down to 6 cans a day (from 8). |
| Terri and I have decided to attempt to write a "how-to" list on surviving the first week, month and year when a loved one has a spinal cord injury. I sure wish we had had one. Jake came home from Froedtert yesterday (spine doc appointment) and he said there was a new diving injury on the floor. It's impossible to explain the emotions that run through you when you hear that. You have to live it to understand. |