| 04-27-05 1:00 p.m. Jake will be at Regions Hospital for the next 2-3 weeks. The doc called Terri after the surgery. Everything went as expected. No surprises, no complications. This is good news. The doc told Terri it will be a 1-2 week hospital stay. This might be due to the success of the surgery, or Jake got the initial time period wrong. |
| 3:45 p.m. Jake just called. I had a short conversation with him. He is happy... a little groggy, dry throat and mouth. They are giving him ice chips. He doesn't know when he will be able to eat. I mentioned that maybe he shouldn't be talking and his answer "yeh, right". |
| He said he had a cute nurse but now it's shift change. I told him that maybe he'd be lucky and get another cute nurse. After a minute or so I heard a voice in the background and then Jake said "she is"; me: "what?"; Jake: "she IS", then I caught on. me: "do you want me to say good-by now?"; Jake: "yes". :) |
| Just in case only grandma's can catch that conversation: his 2nd shift nurse is cute and he wanted to flirt instead of talking to his grandma. Imagine that. |
| 04-28-05 Jake's feeling pretty good. Had a light meal of pancakes and orange juice this a.m. |
| He had commented to an aide that he thought one of the cleaning girls was really cute. To Jake's total embarrassment a few minutes later the aide came into the room dragging the cleaning girl by the arm and saying "Jake, did you mean her"? |
| Serves him right! |
| Well, Jake just called. Her name is Rachel and she spent her break talking to him in his room. |
| He also saw his wound. The resident doc came in this a.m. and Jake asked him if he had a camera so Jake could see his stitches. The doc whipped out his phone and took two pictures to show Jake. So there is a doc in St Paul that has two pictures of Jake's butt on his camera. |
| He was weighed. He is 130# which totally amazes me. I thought he'd be 105# or something. Makes me very happy. In fact, this past week has been pretty good for all of us. |
| thank you for your prayers. They worked. |
| 04-30-05 Jake is extremely happy. The doc visited him twice today. This a.m. he removed Jake's dressing and didn't put another one on. Said it wasn't necessary because it was looking so good. The doc also told Jake that he could lay on his back for 1 hour and that was the best present you could have given him. |
| Jake's stress level has taken a dive. He certainly deserves this mental respite. |
| 05-02-05 OK, I'm going to say it again. Jake is totally happy. How many times in the past 5 years have I been able to write that? Certainly not two days in a row. He's not sick. He doesn't have an infection. He's in very little pain, if any. And he can lay on his back for a short period of time. |
| He has good news. The doc said that he might be able to get into his chair on the 14th. That is a few days before his 22nd birthday. Jake has been given options regarding his recovery. They have advised him to either stay at Regions or transfer to Bethesda hospital. This is preferred over a nursing home environment due to wound care. |
| 05-07-05 One of the two drains Jake has in his wound was pulled this a.m. He said it burned when they removed it. His blood pressure went up a bit; he became slightly dysreflexic, but he's fine now. |
| Jake has gained a little weight. He's 132# now. He eats 3 meals every day, and actually looks forward to them. I asked him how many times he's done 'take-out' in the past two weeks and he said "none, there's no need". |
| Jake is so excited about moving into a group home. You can hear the smiles and grins in every word he utters. |
| He has met a new girl. :) |
| 05-13-05 The second (and last) drain was removed a few days ago. Same blood pressure problem; again slight dysreflexia. But Jake's fine. Today they removed the staples. |
| He says he feels great. He feels like he's gained a little more weight. I'd be surprised if he hasn't. Pretty soon that Boost (a drink like Ensure) is going to have to go. It is interesting that Jake's bed 'weighs' him. I guess all they do is push a button and they know what he weighs. This is such a good thing. When he was at Froedtert they seldom weighed him because it was quite a process to do this. I would still like to know how tall he is. He was about 5"11" (slightly taller than Terri) when he took that dive; and he was 17. I doubt he was through growing yet. |
| I have high hopes that Jake might visit us this coming summer. Going to the State Fair would be fun. We'll have to see. It's so wonderful to plan things. He won't be bed-ridden any more, and every day he is getting healthier. |
| 05-14-05 Terri and Jeff drove up to New Brighton on Thursday in the van. They plan on packing Jake's things from his apartment. He won't be going back there after he is discharged from the hospital. The plans are that he will go to a group home. The exact home isn't known yet. |
| Jake won't be getting into his chair until Monday the earliest. He had the rest of his staples removed today and they would prefer that he stay off the fresh wound for a day. Also they want to pressure map his seat cushion before he sits on it and the hospital is not staffed for that on weekends. |
| They took out 40 staples the other day and about 30 staples today. I told him his butt wasn't big enough to hold 70 staples! Jake said Terri took lots of pictures so I'll be posting them shortly. Terri and Jeff will be back home tomorrow. |
| He has been ranged every day but no therapy. Also no left leg ranging so as not to disturb the wound. |
| 05-15-05 Terri and Jeff arrived home safely. Terri is all grins. Jake is happy, he is enthusiastic, he is healthy- gaining weight. |
| They accomplished a lot on Friday and Saturday. One more trip and everything should be packed and/or out of his apartment. They (I don't really know who 'they' are) want to do the actual move. They prefer to do it that way- especially Jake's bed, which is an expensive piece of furniture. |
| Terri took a lot of pictures. They are on the graft photo page. |
| She even took some pics of Jake's feet (I'll spare you that) because they are clean and healthy-looking. Jake's hands and feet, like that of all quads with no use of their extremities, are usually very white and caked with dry, dead skin. Every time we use our hands we rub off dead skin. He can't do that. It's quite a chore to clean them, and the aides at his apartment sometimes had difficulties understanding Jake's requests. |
| Terri and Jeff took Jake's wheelchair to Regions so Jake will eventually be able to use it. He was brought to the hospital from his apartment on a gurney. They pushed it (quite a chore, it weighs >300#) into the hospital and asked how they could get to room 856 and the gal said "oh, you must be Jake's mom". That kid gets around. even when he's on total bed rest :) |
| Oh, how those prayers have been working! Thank you. |
| 05-29-05 Terri and Jeff are visiting Jake this weekend. They are giving the apartment a final packing, and they are cleaning it. |
| Jake has been transferred to Bethesda hospital, about 3 blocks from Regions. |
| He is now allowed up in his chair 3 times a day, for 20 minute sessions. This will probably be the plan for the next 10 days or so. He could be in his chair longer but he still has a cushion problem. He will either get his new cushion in 2 weeks or be fitted for it in 2 weeks. |
| Some of the people who have been his advocates this past year have never seen him in his chair, only in bed. So this is a new experience for them too. |
| Some disconcerting news- he weighs 128# now. If he weighs 128# now, he must have been 115# or so when he had his surgery because he has really been a chow-hound the past month. Terri says the discrepancy between Regions weight and Bethesda weight has to do with changing kilograms (or something) into pounds. She says he has 'filled out' a bit. I hope she is taking pictures... pictures of his smile, not his butt. :) |
| Jake is extremely excited about his new life-to-be. A few days ago he started thinking about college again and this time I think it will be a reality. |
| Terri visited Jake's new digs and was very impressed. It is a little north of the Courage Center. It will be easy for Jake to go to therapy there. She was going to take pics for Jake to see because he cannot be in his chair long enough for Terri to take him to the house to see for himself. (she has the van) |
| While visiting Jake's new home she discovered that Nick, a former patient at the Courage Center at the same time Jake was there, is now one of the 4 people in the group home. |
| Jake is now having therapy every day along with the daily ranging. His body is slowly turning into a healthy, strong body. Of course this will take time but he is off to a good start. |
| I hope everyone has a safe and happy Memorial Day. |
| Please see page 3 for more updates. (you might have to refresh your browser to see the link) |