| Friday, August 11, 2000 - day 33 Today Jake was wrapped in blankets again, but he was cheerful. He was in his chair, and dressed. That in itself is a very good sign. |
| He ate about 1/2 cup salad (lettuce), 2 beans, and ate the whole saucer dish of plain Jell-O. I had a scare. I thought I'd be smart so I said "if you eat all that salad, I'll go in the corner and stand on my head". Well, he looked at the salad and smiled. I got a funny heavy feeling in my stomach. What did I say! He said "oh that is tempting, but I can't". Well, if that didn't inspire him, nothing will. So I put the fork down. He was done. Later on, when I told Terri about it, she told me that at night (he has a better appetite then) he usually does eat all his salad. I didn't know that. |
| He had about an hour of therapy this a.m. In the gym. He liked that. He tried to explain to me what he had done, but I didn't understand. Since tomorrow is Saturday maybe we can go down to the gym and he can show me what he meant. I don't mean doing the exercise, but the equipment he used. |
| Jake attempted lasagna last night. One swallow and he needed to be suctioned. I don't understand this, milk products never bothered him before. I guess that will be a question for the team meeting next Tuesday. |
| A fellow patient, Nick, told Jake that the more he exercised, the less he would have to be suctioned, and that's true. Jake usually only needs suctioning in the a.m., after sleeping all night. Jake needs to exercise his lungs. Build them up. Make them stronger. I think Jake has two problems going on, (in regards to the suctioning) his weak lungs, and this dairy problem. I hope this is a passing thing. He loves milk, cheese, yogurt, ice cream... everything dairy. |
| Jake's scalp is quite tender today. He asked me to scratch his head, and he cringed when I put my fingers on his head. Don't have a clue why. Last week he wasn't this sensitive. |
| The Darvon seems to be working. No itching; no tummy upset. Yes! |
| Tomorrow is the weekend. We can visit longer. Maybe pictures. |
| This was a good day because Jake smiled. Even though it was because of thoughts of me standing on my head. :) |
| Jake's Progress -Saturday, August 12, 2000 - day 34 Jake was in bed, sound asleep when I got there at 11:30 a.m. I said hi, he opened his eyes, then closed them again. I read for a while, then I started rubbing his right arm, the arm he says he can feel when I run my hand over it. Nothing. He didn't even stir. Finally at 12:30 I woke him up. It seems he had a terrible night. Not in pain or anything, just couldn't sleep. Even with sleeping meds. He said he's been sleeping all morning. Since 8:00. |
| Ate a mediocre lunch, but no worse than yesterday. 1/2 slice of ham lunch meat. 5-6 spoons of soup broth. All the Jell-O in the saucer, and about 4 sm bites of cantaloupe. |
| I hope Terri can get someone to weigh Jake today. He is skin and bones. He must be down to 120 pounds. (he's a tad under 6 ft.) |
| The trach is still in, but more than likely will come out today or tomorrow. I left at 4:00 and he still had it in. |
| One of Jake's teachers called Terri today. He said that he would like to be one of Jake's home school tutors. While feeding Jake today, I mentioned this to him. He grinned from ear to ear and said "that made my day, I suddenly feel a lot better". Yesterday I received an email from another of his teachers, asking if he could visit Jake. When I told Jake about that he never let me finish the sentence, he just nodded his head and said "yes yes yes". |
| One of Jake's fears is that his friends will think he is different now. I mean inside. He's still the same old Jake. Nothing has changed. The only difference is that he is limited in his physical movements, and his breathing is a little harder. He still cracks jokes; rolls his eyes when I put his boots on backwards; listens for the helicopters so I can see them come in for a landing. Right now his voice isn't very strong, but that will not be forever. Some of his friends have come to visit him. He loves that. Nothing makes me happier than getting kicked out of his room because his friends are there. :) |
| PT came around 2:30 and put Jake in his chair. Then he went for therapy. He is learning how to move his arms using his shoulder muscles. He is doing quite well. Hopefully tomorrow I can get some pics. Maybe we can go down to the therapy room and Jake can pose in front of some of the equipment. |
| I told him I'd be there around 11:30-12:00 tomorrow; and asked him if he would try to be in his chair when I got there. My heart sinks every time I come up to his room, and see his empty chair outside his door. Then I know that he is in bed, either sleeping or feeling poorly. The best time is when the room is empty. Then I know he's in therapy. It's so nice when I sit in his room, waiting for him to return from therapy; he wheels into the room and says "hey gramma". |
| Sometimes I worry because he seems to be progressing at the rate of a snail's pace. But he has had so many setbacks, with his heart, his lungs, the fevers and chills, the dairy thing, the suctionings, now the UTI. Hopefully, most of that is behind him now and he can concentrate on his therapy. No, I am not putting my head in the sand; I realize that he will continue to have temperature highs and lows; that the UTI's will probably be with him from now on. But he can practice his breathing and make his lungs stronger, and his slow heart rate has abated. |
| He still has problems with his blood pressure; he gets very dizzy when they first put him in his chair. Someone told him that a little caffeine would help that, but believe it or not, he gets sleepy when he consumes caffeine. (weird, huh? - that's the ADD thing) But we can work around a lot of these things. Nick, fellow patient and new friend, says even the assisted cough becomes less and less, as you learn to move around more, and exercise the lungs to make them stronger. |
| I have a lot of people to thank for my relatively sane frame of mind. If you hadn't sent me your emails relating to your experiences I wouldn't be aware of all those little things that were absolutely driving me mad with worry and doubt. |
| btw, please keep sending him messages. Every day he asks us to read him his new emails. They are very encouraging to him. |
| Sunday, August 13, 2000 - day 35 Today was a hard day - a long, emotional, difficult day. But it ended well. |
| Please keep praying for my grandson. |
| Monday, August 14, 2000 - day 36 Today the trach came out. I was there. Jake wanted both Terri and I there, but during the week that is difficult because of our hours. He has the grossest hole in his neck. He thinks it's neat. |
| When Jake realized that Sarah was about to pull it, he tried to back track, but before he could say a word, it was out. It was painful, but more so than the pain was his breathing, which immediately became labored. He started to panic, but Sarah is a very cool lady, and she calmed Jake down. |
| Jake had not been suctioned today, but had it twice yesterday. |
| He insisted that Sarah put a lot of tape over the gauze - he's afraid that it will fall off. Well, Jake is a very hairy guy. It's going to hurt a lot when she checks it tomorrow. |
| He can't talk again. Not until the hole closes up. If someone pushes into the bandage he can talk. I'm having fun with that. If I get tired of hearing him talk, I just remove my finger from his throat. :) |
| Sarah says that the hole may close up as soon as one or two days. His age is a factor; it would help if he were eating a more balanced diet, but the tube feedings and the vitamin help. He is eating better than he was a week ago. |
| He was in bed napping when I got there, but he woke up immediately when I spoke. His chair was not there. They took it to do some repairs. There was a manual chair in his room but PT does not want to put him in it until 1:00 because Jake can't tilt back in a manual chair. |
| So he ate lunch in bed, but this time not because he wanted to, but because there was no choice. Ironically I think today he would have preferred the chair. (for the first time) |
| When I left he was in a good frame of mind, even though he had just had the trach pulled, and was about to be lifted into a manual chair for the first time. |
| It was wonderful to see his smile. |
| Tuesday, August 15, 2000 - day 37 Well the trach tube went back in early this a.m. He had to be suctioned X6 during the night; via his left nostril. He claims the tube was twice the size of his nostril. I'll check that out. |
| I found this out early this a.m. Terri had left me a note. So I expected the worst when I got to the hospital. I was surprised. |
| He was in bed, but not sleeping. He was very tired. Didn't get much sleep last night. Every time he would nod off he would end up needing to be suctioned, then it would take him a while to get settled again; then everything would start all over again. He claims it was the worst night of his life. I reminded him that he was only 17 yrs old and he had lot of years left in him, so he amended it to include, "so far". |
| It was a frightful and painful experience. He wanted to talk about it, so I let him talk. He went on for some time, and in great detail. He fought them when they first attempted to put the tube in his nose; he fought them quite hard. Unfortunately, that's about the time that Terri and Dave walked into the room. Not a welcoming sight, especially when I had reported that Jake was in great spirits when I left; trach out and waiting to get into a manual chair. Oh what two hours can do. |
| He ate a passable lunch today. The dietitian would have smiled. :) He wants a sour pickle. I'll have to find a deli that sells them. You know the ones, they are huge. Kris, my daughter, had brought him some dill pickles, so he had to be satisfied with them for now. He ate some pork, a sauce dish of Jell-O, some wax beans and a few grapes. Now the reason I'm telling you this is because when it came time for his meds, he flatly refused to swallow any of them, including the small pills that he has been swallowing for over two weeks now. |
| Now I admit that he chews the food real slow, then washes it down with water, but the pills were very small. I'll see if he changes his mind soon, otherwise I'm going to have to reason with him. The feeding tube is convenient for meds; but when he starts eating better, that will come out. My reasoning is that he should not rely on anything but himself if at all possible. The feeding tube is a "crutch" and pretty soon (hopefully) that crutch will be gone. |
| Jake reports that yesterday, before the breathing disaster, he was put in a manual chair, and he loved it! Everyone was surprised, including him. He can push himself forward and backward (he uses his shoulder muscles) but can't maneuver corners yet. I suspect that he got his endorphins going, and he liked how he felt. It just occurred to me that maybe that triggered his breathing problems. I'll ask someone tomorrow. Oh, I hope not. He was so enthused about everything yesterday; what a high/low day. |
| Well, for sure he'll sleep well tonight. They have no intention of letting him sleep today. He will probably fall asleep before I will tonight. :) (I'm in bed by 7:00 because I'm up at 3:00) |
| I consider this a good day because of his frame of mind. That is 100% more important than his body. In our family a sense of humor is also required. We have never lost this over the past 37 days. I admit some days we misplaced it, but it was always there. Humor creeps into the conversation at the weirdest times. (I think this is a Leitzke trait) Jake has never lost his sense of humor. Even during his first two weeks of "morphine haze" humor would occasionally creep into his limited conversations; sometimes at very unexpected moments. |
| Today went well because he was smiling and joking. He was also very contemplative about his experience of last night. But I let him talk about it and then he felt better. He thought he was going to die because he could not breathe. That must be terrifying. |
| Again today I left Jake as he was being placed in his chair (the automatic one - can't bring myself to call it an electric chair). He was tired, but willing to go to therapy. |
| Wednesday, August 16, 2000 - day 38 This note from Terri was waiting for me this a.m. (the note is referring to Tuesday night): "Mom We had a wonderful night. When I got there Jake was in his manual chair again. Then... get this..... we went to Applebee's for dinner!!!! He LOVED it!!!!! (he did go back to his electric chair for the trip, although he said next time he wants to use the manual one) We shared a steak dinner. He ate fair, just a little more than usual. Three of the other guys came along too. He didn't want to go back. He wanted to just sit there and listen to the restaurant noises. Then while we were waiting for the van to pick us up, he just wanted to sit in the warm breeze. He had a wonderful time. (he even got a balloon) Love, Terri" |
| As you can imagine, I proceeded to have a very good day. :) But, as I have learned, things can change very quickly in a sci patient. So as I walked into the hospital I started gearing myself up for a possible bad day. I gave myself a pep talk all the way up to the 5th floor. I am going to get a reputation; pretty soon everyone will say, "there's this weird lady, every day between 11:30 and noon she walks through here talking to herself, just watch, you'll see". |
| Jake was not in his room, and his chair was gone. Two good signs. Then the nurse poked her head in the door. Jake had an upset stomach; she was on her way to give him some meds. (he had been in PT, on his way to eat) I met Jake in the dining area; he was shivering. I got him a blanket. |
| OT wanted him to try to feed himself again. With the same plate guard he had used before. He did well. This was the first time I had seen him feed himself, the other time he had been in therapy. Unfortunately, with his queasy stomach, he balked at eating much. He got down about 2 or 3 forkfuls and decided to stop. Well, just about that time one of his teachers, Mr. Eppert, walked through the door. Jake brightened perceptibly. He showed him how he could feed himself (another forkful). I said maybe Mr. Eppert would like to see that again, but Jake was on to that game. He also ate about 2-3 spoons of Jell-O. That was it. Poorest lunch he's had in a long time. |
| I had brought with me, at Jake's request, some sharp cheddar cheese (I know, dairy, but he asked for it), some ring noodle cup-a-soup, and a sour pickle. I found one at the Sentry store that he had been working at, and Virginia, who works in the deli, bought it for Jake. Of course, he didn't want any of those things. I can understand the pickle and cheese, but I thought the soup might go down well. He wouldn't even try it. Hope Terri has better luck tonight. |
| Jake finally got weighed yesterday. He is 118#. Like I mentioned earlier, he's a tad under 6 ft. tall. |
| I have tried to make Jake understand that if he would eat some breakfast - anything, doesn't have to be cereal or eggs - he would not only feel better, he would perform better in therapy; probably not get a queasy stomach; gain a little weight (or at least not keep loosing weight); and maybe, just maybe, he wouldn't get so cold sometimes. He has no appetite. I understand that it is very difficult to eat when you are not hungry, but he is going to have to bite the bullet :) and start putting food in his stomach. |
| Mr. Eppert brought Jake some audio book tapes. He brought a Stephen King tape; Jake's favorite (only) author. Only time I've ever seen his nose in a book was for Stephen King. |
| Jake mentioned that another of his teachers, Mr. Rinehart, visited him Monday afternoon. |
| Jake is allowed visitors between noon and 1:00 p.m.; and again from 4:00 p.m. till 8:00. Please stop by if you are in the neighborhood. Jake would love to talk to you. |
| Thursday, August 17, 2000 - day 39 Today Jake was in bed when I got there. His stomach was still upset. They had given him Compazine, which made him very sleepy. |
| OT came and put Jake in his chair. Then I decided that he would eat in his room. It was time we had a little talk. About goals and expectations. It was a good talk. I hope we both learned from it. |
| He promised to start eating a little more each day. He promised to work a little harder each day. I promised to expect more from him each day, and to be his loudest cheerleader. I also promised not to accept an "I can't" from him. |
| Jake is going to try to feed himself more often. We usually feed him, but with the proper tools, he can manage fine. Trouble is he gets tired, so he quits. He tells me he doesn't know when he is hungry or full. Since Jake has no appetite, he has no incentive to eat. It's easier for me, or Terri, to feed him because we are tenacious, (and we bully him into eating). |
| OT has a plate guard, about 2-3 inches high, that fits around half the plate. Food can be speared with a fork; (attached to a splint on Jake's arm) then he pushes the fork to the guard, pierces the food, and raises the food to his mouth. He fed himself cut green beans yesterday. This obviously would not work with soup, but I'm sure OT can handle that too. |
| I spotted a copy of Edgar Allen Poe's stories in the gift shop and picked it up for 25 cents. Jake was excited about that. Seems he's read some of his stories in English class, and was happy that I planned on reading them to him. And here I thought Stephen King was the only author Jake knew. hmmm... Stephen King and Edgar Allen Poe... |
| Jake is allowed visitors between noon and 1:00 p.m.; and again from 4:00 p.m. till 8:00. Please stop by if you are in the neighborhood. Jake would love to talk to you. |
| Friday, August 18, 2000 - day 40 Jake had an allergic reaction to the Compazine he was given yesterday. His jaw locked, and his joints stiffened. Now we have two drugs on the list of no-no's, Compazine and percocet. |
| Jake and I had a good time today. He ate sparingly, but he did not protest. When he said he was done, I gave him a few bites more. He says he can't tell if he's hungry, but he can tell when he's full. Now I don't know if I buy that, but until I'm sure, I stop shortly after he says he's full. |
| We joked with each other; made a big deal about a "bib" when I gave him some soup. The other day I accidentally spilled soup all around his trach. It was a sticky mess. He's not letting me forget that. |
| After lunch he drove away to OT in his automatic chair. They are going to show him how to brush his teeth. The brushing is probably the easy part. I wonder how he's going to get rid of the toothpaste? |
| Today was good. (so far). I know that by the time Terri gets there it may be an entirely new ball game. If it's one thing I've learned, this roller coaster life does not stay in one place for long. |
| Yesterday Jake asked Terri, "if God is so good, why did He do this to me". Oh boy, answers are hard. Especially when we don't know them. Please pray that we may give Jake answers that will not turn him from God., but make his faith stronger. |
| Jake is allowed visitors between noon and 1:00 p.m.; and again from 4:00 p.m. till 8:00. Please stop by if you are in the neighborhood. Jake would love to talk to you. |
| August 19, 2000 - day 41 When I got there today Jake was sleeping. Seems he had trouble sleeping last night so everyone let him sleep this a.m. He asked me if he could sleep for another 30 minutes and I said no. If he wanted to sleep I would go home. |
| Sounds like a bad day but actually it was one of the best days he's had so far. OT came at lunch time and decided Jake would feed himself. Well, I was all for that. It is very tiring trying to coax someone to eat every little bite. OT wheeled a table over Jake's bed so he could reach the food. Then OT (OT is occupational therapy - I would use their names but I don't want to intrude on their privacy) put a fork in Jake's brace. Since he didn't have the benefit of the plate guard today, OT speared the food for Jake. Then showed him how to lift his shoulder and his arm the correct way. Jake hit his nose, chin, finally made it. |
| After a while Jake was doing all the work by himself. I was very proud of him. But the corker... well OT speared about 5x the amount of meat I always gave Jake. And Jake always complained to me that it was "too much, too much". Well, the little brat just kept putting it into his mouth. Chewed it; swallowed it; ate some more. None of this, "I need some water to swallow it". After a while I think Jake could sense that I was staring/glaring at him. He glanced my way and a grin snuck across his face. A silly grin. |
| After a while OT left; I told him I would take over. Then Jake started getting tired, but he managed to eat half the meat; and completely finish the dish of canned peaches. Also drank over half a can of soda. Believe it or not, he is encouraged to have caffeine every day. It helps raise his blood pressure; makes his dizziness abate when he sits up in his chair. |
| RT (respiratory therapy) came in for therapy. It consists of 2 different types. First Jake does his incentive spirometry. I explained this in an earlier post. He does fairly well with this; he is more successful if he is laying down. In his chair, his breathing is more difficult. That's done x2 a day, 20 reps each time, but usually I get Jake to do one round of 5 reps while I'm there. |
| The other therapy consists of a small gadget, sort of looks like a kazoo. Jake must breathe through this for ten minutes - not breathing through his nose. It lessens his intake of air, which means he must breathe deeper/longer to get enough air. It has 5 settings, 1 to 5, 1 being the easiest to get air; 5 being the most difficult. He is still on one. He hates this therapy. I found out today that he usually won't do it. Tells them he's tired; not feeling well. He won't say that anymore. He will do the therapy when asked. |
| The reason that he needed all that suctioning last Monday was because he is not breathing deep enough; his lungs are not being exercised enough. He cannot cough up his normal, everyday secretions. |
| Terri, Jake and I roamed the hospital today. We discovered that getting in and out of an elevator is a challenge... he must either back in, or back out. He |
| Sunday, August 20, 2000 - day 42 Jake was sleeping in his bed when I got there. His chair was not in sight. Seems nobody came in to get him up. Later in the day a nurse said that it was his responsibility to ask to be put into his chair, he should not rely on other people to make those decisions. That sounds good, but someone could have told him that earlier. Oh well, now he knows. |
| He ate in bed today. I fed him. I didn't know where his chair was, and his eating brace was in the chair. I think he ate quite well. Almost a whole serving of swiss steak, and 3 slices of lettuce. He said he has never felt so full. :) |
| At 2:00 p.m., when they transferred Jake to his chair he almost blacked out on us. He had been laying almost completely flat in his bed; they boosted him up, then to the chair. All of a sudden, he couldn't see anything and he almost blacked out. They gave him some oxygen for a couple seconds, then he was ok. His Foley bag had been completely empty right before the transfer; immediately after it was almost full. The nurse thinks that might have caused the near-syncope; that or getting up too quickly. |
| Terri, Jake and I went down to the patio outside the cafeteria. He did quite well in the elevator today. Insisted we wait till no one else was going on one, then he turned around very smoothly in the elevator. |
| Jake just sat in his chair, soaking up the beautiful, breezy, balmy, sunny, wonderful day. It was in the low 70's, no dew point to complain about. He just sat there and grinned. Now when was the last time we enjoyed something that simple? |
| I bought some popcorn and Jake wanted some. I thought he was kidding so I called his bluff. I started to push some popcorn into his mouth. I thought he'd clamp his teeth together, but he opened his mouth. He ate about 1/2 cup. He really surprised me. Maybe we are on our way to gaining a little weight. (just him, I hope). |
| Terri brought her hair trimmer, but didn't get Jake's hair cut before I left. I don't remember his hair ever being this long. Hopefully, she will be able to cut it today. |
| Well, I do believe that we have had 3 good days in a row. Are we on a roll, or what? |
| Monday, August 21, 2000 - day 43 I think we have settled into a routine. Things have been pretty steady last few days. No more sudden drops in that roller coaster. Jake is eating better; exercising his lungs more willingly. He is in a better frame of mind. He is not letting these little setbacks, such as fever, chills, nausea etc., take over his whole day. (actually he hasn't been bothered by these things lately). He is taking a little control over his life. |
| I am disappointed that I do not have any photos to post. I would like to get some of Jake doing his therapy. Some photos beside Jake in his chair or in his bed. Unfortunately, we are highly discouraged from attending his therapy sessions, and we haven't tried to venture into the gym area on the weekends so he could at least point to the apparatus he uses. Sometimes they close the doors. Sometimes we roam the hospital instead. Oh well, most things will come in time. |
| The important thing is that he seems to finally be progressing. |
| Tuesday, August 22, 2000 - day 44 Jake complained of difficulty breathing today. He has not been suctioned for 4 days. He is proud of that. He did his breathing exercises for me today, but did not do well, and he was laying back in his chair, which makes the exercises easier for him. For the past 4 days he has done his breathing exercises for me, and has done them well. Every day the little marker gets higher and higher. |
| At lunch time he started to feed himself. Sliced turkey with gravy. Got 2 forkfuls down and I had to get him to his room, fast. He was sick. Ended up eating 3 mandarin orange slices, that's it. He was nauseated for the rest of the time I was there. I kidded with him that he didn't have to be so graphic about the hospital food. :) |
| But... he slept through breakfast. This was his first solid food since last night. I again tried to make him realize that he has to eat. He must get up in the a.m. He was in bed till 10:30 a.m. He didn't get any pain meds yet today, but he had some last night, they are probably still in his system, yet his stomach is empty. |
| For the past 4-5 days I've thanked him for giving me such a good day. He was miserable today, but he made me feel even worse when he looked at me and said "Grandma, is this still a good day for us?". I told him any day that he is out of that bed is a good day. |
| Thank you for your prayers. The roller coaster dipped a little bit today, but we're on our way back up again. |