August 1-10, 2000

Tuesday, August 1, 2000 - day 23
Oh boy, talk about a roller coaster ride! Jake was in very good spirits when I arrived today. He had a t-shirt on. First time he wasn't in one of those hospital gowns. Yesterday before I left I asked him to please wear one today. Hospital attire leaves a lot to be desired.
I suspect that he was feeling good about himself. He passed quite a hurdle yesterday, and I made sure he knew that I was very proud of him. He was proud of himself. I could tell by the way he talked.
I got there at noon. Jake had a breathing treatment, then we headed for the dining area for his lunch.
He is still getting the breathing treatments 4 times a day, and now the therapist has left an "incentive spirometer" in his room. We are to encourage Jake to use it during the day, at least 5 breaths each session. He breathes in while he has the tube in his mouth. It measures how much air he can breath into his lungs.
Spinal cord injury patients have a difficult time breathing when they are sitting upright. My reasoning would be that it should be easier, but that's not the case. When they sit up, gravity flattens out their diaphragm, making it difficult for them to breathe.
I fed Jake today. Terri went to work for a few hours; she came around 2:00. He ate sparingly, as usual, but it went easier today. I warned him that the irony will be that in a few months we will have to monitor his diet very closely; now we'd be happy if we could get anything down him.
Good news! They are planning to pull the trach on Friday. If everything goes ok.
Physical therapy started at 1:00. His arms were worked while he was still in the chair. OT is teaching him different maneuvers, including how to balance himself while he steers so he doesn't tip over. He has a place to rest his arm now; that was installed today.
PT worked with Jake on the mat. He put Jake's arms in slings so Jake could exercise them. He did quite well.
He got a shave and a hair wash last night. That is another reason why he felt so much better today.
His hands are becoming very scaly because of disuse. OT told us to wrap his hands in moist wash cloths for five minutes, then rub away the dead skin. She said this happens because he is not using his hands. The skin on our hands is constantly being rubbed by our daily activities. One of the patients volunteered that vaseline jelly works well after you rub the hands.
Jake's team meeting was today. About 16 people in the room. Now the discharge goal is one month! I'm a little unnerved about that. One month sounds so soon... 6 to 8 weeks sounded safer. But Jake is progressing faster now. It's still a slow pace, but he is so much better than he was a week ago, and the week before that.
He is one tough kid. I don't think I would have handled this as well (at age 17) as he is. Today he said, "one part of me knows that I will walk again, and one part of me knows that I never will, and another part of me hopes I will. But whatever will happen, I'll be o.k."
I will report on the team meeting in more detail later. It is getting late for me.
Today was a good day, thanks to God and your prayers.
Wednesday, August 2, 2000 - day 24
Jake greeted me today with the news that he has a new trach tube in. He's down to a #6, and it's smoother. He is very happy. Swallowing is much easier for him now. When I started feeding him, his comment was "holy cow, I can swallow!" He still didn't eat much, but better than yesterday. And tomorrow will be better than today. He informed me that he had some jelly bellies last night. I brought him some strawberries which he said were too tart, so I had to put some sugar on them. He had green beans and cantaloupe for lunch.
He had another breathing treatment, and I was instructed in "cough assist". I guess I assumed that this need would pass, but it won't unless Jake regains use of his abdominal muscles. All of us need to know how to do it. Jake says I don't do it hard enough. I told him I just needed practice.
Respiratory therapy is getting tough again. She insists that Jake try cough assist first, before requesting suction. Jake likes to take the lazy way out, but if he wants that trach tube pulled, he needs to use cough assist. The suctioning is becoming less and less frequent.
We were shown how to transfer Jake from his chair to another chair, or bed. PT demonstrated this today. I'll give it a try tomorrow. It doesn't seem difficult, but I don't know if I have the strength to do it. But he has lost a lot of weight; I guess we'll see what happens.


Yes, Jake is balancing by himself!
It was only for seconds, but he did it.
Way to go JAKE!

Today was difficult and painful for him, but it's another giant step. He did not complain, he did what he was told to do. We are very proud of him.
Thursday, August 3, 2000 - day 25   Happy birthday Terri!
I arrived about 12:10 today. Traffic was terrible. Jake was waiting for me in the dining area. His lunch tray wasn't appealing, so I heated up some chili that I had brought from home. He ate half of it, about 1/4 cup. That is encouraging.
Then we headed to his room for a breathing treatment. Now the news is that the trach will be pulled on Monday. Respiratory therapy would rather do it on a Monday instead of a Friday. Sounds good to us.
I must warn Jake's friends. He insisted on keeping the trach tube they pulled out the other day. It will be a "show and tell" item.
He tried to swallow a large pill today (cut in half) but it was too much for him. He choked on it. I think if it hadn't had sharp edges maybe he could have handled it. It was frightening for him because he couldn't breath. He knew the nurse would help him, but scary all the same. Guess they'll be crushed for a while yet.
PT took Jake for a walk/ride around the grounds today. He did fairly well. We weren't prepared so he didn't have any sunglasses. Next time we'll be ready.
PT took him to the gift shop. Jake had his first taste of rudeness. It surprised me because you would think that in a hospital of all places people would be more considerate. The ladies who work there especially, but also the customers, had no time or patience for Jake. They were just plain rude. No other word to describe it. Maybe uncaring or indifferent would be more accurate. Jake was apprehensive about driving around in there, but his chair fit, so we went in. No one moved for him, no one even acknowledged that he was there. Jake had to wait for people to decide to move; two people were chatting in an aisle; one of the workers who was behind him got impatient and cut in front of him. And it wasn't the customers as much as the ladies who worked there. I thought it was inexcusable.
I guess it was a good experience for him (and me). He has to realize that most people are more concerned about themselves than about someone in a wheelchair. Sad lesson to learn at 17 years (at any age).
Although visiting hours are from 11:00 a.m. till 8:00 p.m. we are encouraged to limit our visiting hours to 12:00 to 1:00, and 4:00 to 8:00. Up until now we have not felt that Jake was ready for this, but now we think it is time. Jake is not happy with this, but he will adjust. He is an extrovert... wants people around him all the time.
Jake is breathing on his own now; hopefully the trach tube will come out on Monday. His suctioning is becoming less and less. He is becoming quite adept at maneuvering his hand onto the steering bar on his chair. We think he is ready to face the better part of his day alone. I mean without us. He has different types of therapies throughout the day.
I plan on visiting him between 12:00 and 1:00. Then we can visit, and I can feed him. It isn't even 1 hour; he is always late from morning therapy, and he must be in his room at 12:45 for a breathing treatment, but that's ok. It's a good time for me because of my crazy hours.
Jake's updates will be shorter now. At least the weekday ones. On the weekends we plan to be there longer.
Thank you for your prayers. We need them now more than ever. Jake has a lot to learn, and with God's help, and our prayers, he will succeed.
Friday, August 4, 2000 - day 26
Today I arrived early (traffic again-can't win) so I stayed in the cafeteria until noon. Then from noon to 1:00 it is our time together. Well, almost. Jake needed his meds; had a problem with the large pill. They cut it in half again. This time the nurse put it in applesauce. Jake did not want to take it but he did. Choked again; assisted cough, water. We think it finally went down. Then he needed suctioning. Then he was exhausted. Maybe tomorrow they will cut it in quarters. He needs to start swallowing his pills, we can't be crushing them all the time. After the trach is out, it will be a lot easier, I hope. I think part of his problem is the thought that he can't swallow a pill.
Respiratory therapy will pull the tube on Monday if he does not need suctioning Saturday or Sunday.
Last night he had a queasy stomach. Meds didn't help. They started the tube feeding, then he felt better. He said, "maybe I have to eat more food". I guess staying away from the jelly bellies would help too. :)
Speaking of lunch, he ate poorly again. It looked delicious. Beef barbecue, bun, mashed potatoes and gravy, peas and carrots, and cantaloupe. He had about 4 small bites of meat, and maybe 6 of the peas and carrots; 3 small bites of cantaloupe. Granted, he is not very active right now, but the guy is just about 6 ft tall. I don't know what he weighs now but I will guess at 130 pounds. I'll ask tomorrow.
I spoke with Jake about the visit to the gift shop. He said he didn't mind the way the people acted; he was afraid he'd hit someone. Then he said he thought the old lady who worked there, and cut in front of him, could have been a little more considerate. He worded it a little differently, but that was the gist of it.
Well, our hour was up. PT came to take him to the gym. Tomorrow I think we can be there all afternoon. I hope so. Then I'll take some pictures and get more updates on his progress.
Oh, the best news, and I almost forgot. Jake had a little feeling/movement return to his left wrist. Very subtle, but he can move it one way. He still cannot hold his wrists erect.
Saturday, August 5, 2000 - day 27
Well, I had thought I'd have a little more time with Jake today. This noon to 1:00 visit is too short. Especially when half that time is taken up with taking meds and getting treatments.
I got there at noon and coaxed 1/2 carrot and 2 pieces of fruit cocktail down him. Oh, also 5 cherry tomatoes from the garden. He was done. Then I said "let's go outside before it rains".
Well, it seems he woke up at 3:00 a.m. and couldn't get back to sleep. He was very tired. So I watched him sleep! Then at 2:00 Terri came with 2 of Jake's friends. Then Terri and I got kicked out of the room. We came back at 3:00 and got kicked out again. Then I took Jake's friends home. :( No pictures today, hopefully tomorrow.
We discovered that a side effect of one of Jake's meds virtually takes away his appetite! So the doc  reduced the dosage, but does not want to stop it right now. The drug also raises the heart rate and blood pressure, and Jake needs that.
They were going to weigh him today, but I had to leave before they did it. On July 20th, Jake weighed 132#.
Today the nurse dissolved that troublesome pill in some water. Jake said it tasted terrible. So now he has a choice, swallow it whole, broken, or dissolved. Hopefully, in a few days that tube will be out and he will be able to swallow better.
So far, he had to be suctioned once this a.m. Everyone says that is ok. The tube still could be pulled on Monday. I am hoping that once that tube is pulled, his therapy will be intensified. According to the team meeting goal, he should be going home in just a little over 3 weeks. I don't think that 3 weeks is enough time. I see what he can do today, and I know what he did last week. He has progressed, but the pace is slow. I think that is mainly due to his respiratory problems. I hope I see more progress this coming week.
Can anyone tell me of their experiences with rehabilitation? Am I being too impatient, too soon? I would appreciate any comments. It might ease my mind. It might alarm me. But I would still like to hear from you.
 
Sunday, August 6, 2000 - day 28
Terri reports that last night (Saturday) Jake ate a decent dinner. He had a fair amount of baked chicken (dark meat) and a salad. After Jake ate he announced that he felt better than he has all day. Grrrrr.....
They gave him his percocet last night and shortly thereafter he started itching. (again) Terri investigated and discovered that the only med he had been given was the percocet. She asked the nurse if that could be the reason for the itching that has plagued him ever since he stopped the morphine. (almost 2 weeks ago) His pain meds were changed to Vicodin. We have asked numerous people; no one will tell us when he can go to a non-narcotic pain reliever. "it is different for each patient".
He has been itching - even given benadryl for it, on numerous occasions. It is very frustrating when you are trying to sleep and you keep itching. Well, Jake can't even scratch himself. He must endure the itching. Or call a nurse. That gets old fast when you keep calling a nurse to ask that he/she scratch your face. Hopefully, finally, this will ease for him. He was forever asking us to scratch his face when we were visiting him. I was pretty sure it was a drug but couldn't figure out which one. Today he reports that his itching has almost completely stopped.
It took me 2 hours, but I got 1/2 serving of swiss steak down him. 2 hours. We're talking about a piece of meat about 2"x2"x1/4"! He drank over two cups of water with that. He takes a bite, chews for about 2 minutes, then swallows it with a sip of water. Then another sip of water. He wanted to quit. I wouldn't let him. We kept going till PT came to get him. Tomorrow it will be more difficult because we only have about 1/2 hour to eat.
Right now I'm stewing a chicken for him. :)
The trach could come out tomorrow, but Jake is apprehensive about that. He has been told that if he needs to be suctioned, they will go down his nose. He doesn't like that idea. He had to be suctioned this a.m. a few times. Dr Waring will make the final decision as to when the tube comes out.
No pictures. He stayed in his room the whole time I was with him and his room was dark. I don't like to use the flash. So no photos. There is always next weekend.
Tomorrow starts a new week of therapy. I pray that Jake has the physical and mental strength to achieve everything he is asked to do. Thank you for your prayers.
Monday, August 7, 2000 - day 29
I brought some chicken for Jake. Dark meat, boiled. Easy to eat, not dry. Well, he ate about 1/8th of a cup (not bad), and announced that he was getting sick of chicken. He looked at me and then decided that he would eat some more anyways. He also had about 1/2 cup salad with dressing and 2 slices pears. Not bad. Only took him 45 minutes to eat today. I call that a step forward.
Trach still in. He had to be suctioned again this a.m. I asked the nurse if this was normal; she guessed that maybe some of the medications might be causing this. I'll ask the doc next time I see him. Everyone at Froedtert is willing to answer your questions, if they are able to. No brush-offs; no "I'm too busy to bother with you". Jake is in a wonderful place.
The nurse that Jake has had for the past 7 days says she thinks Jake has improved a lot in that time. That made me feel better; I have been very discouraged the past couple days.
Jake announced that his itching has stopped completely. Yes!
Terri got Jake some new athletic shoes; I might have mentioned this before. A size bigger than his regular size. Well, for the past 2-3 days he has not been able to wear them because of red marks on parts of his feet. Today they put them back on. They look nicer than those ortho boots. OT commented that the farther back in his chair he sits, the more likely that he will get the marks on his feet/ankles.
Last night and today Jake has been complaining about his left pinky "burning". He had us put a rolled up tissue between the two fingers so they would stop rubbing together. Terri didn't connect on this last night, and I didn't connect on it today. OT came in the room and I commented on it and she said "this could be good". All of a sudden the lights went on. How could we miss this?
So this has been a great day!
I left him at 1:00. He was on his way to therapy with an apple. Today he will get a lesson in feeding himself. I wonder if he will eat better for himself than he does for me. :)
Thank you for your responses in regards to PT and Jake's progress. Especially Patti, who went through the same thing with her son a few years ago. Patti has assured me that Jake's slow progress is normal for spinal cord injuries. I must admit I have been extremely upset these past few days. Jake just didn't seem to be getting any where. Someone should write a book entitled "how to survive the first four weeks when a loved one has a spinal cord injury". All I wanted to hear was that Jake was doing ok. And Patti gave that to me. :)
Tuesday, August 8, 2000 - day 30
When I arrived today at noon Jake was still in bed. He has a temp of 102.6, down from 102.8 this a.m. He said that last night he was freezing (his teeth were chattering) so they wrapped him in blankets and towels. And now he is warm. The room was warm today. I turned on his fan. He had limited OT at bedside. I fed him at bedside. He had almost a whole slice of turkey, and some grapes. They are discontinuing the med that kills his appetite so hopefully my noon-time job will become easier.
They are watching his temp, but not treating it yet. I guess this is fairly normal with spinal cord injuries. His sweat glands are not working, and that is the normal way for us to cool down our bodies when we are warm.
Jake reports that he did fairly well with the apple yesterday, with some help. The cut-up apple was on a plate; the plate has sides on it so Jake can push the apple piece to the side, then stab it with his fork. The fork is tucked into a pocket on his arm/hand brace. Well, he tried it alone, and was able to raise the fork to his... neck brace, where the apple promptly fell off and landed on the floor. Then OT held his elbow, which enabled Jake to raise the fork above the neck brace. So, once he gets that neck brace off, eating will be easier for him. At least getting it to his mouth.
He is very proud of the fact that he can move his left wrist. He can move it back (extend it) but gravity helps him move it forward (flex).
Therapeutic Recreation Rehab Services visited Jake today. She told him about some of the many services available for disabled people. Also showed him the different apparatus available so he can go fishing. There are many wheelchair accessible piers in our area for Jake to take advantage of.
Tomorrow they are planning a trip to the zoo. Jake is enthusiastic about this. Hope his temperature is stable by then.
Trach tube is still in. They don't mention when it will be pulled. I suspect one day soon I'll walk into his room and it will be out. I don't know if Jake had to be suctioned today. I forgot to ask him. That hour goes very fast. :) Terri has more time with him, but sometimes Terri and I don't see each other (to compare notes and Jake's status) for a while, due to our different work hours.
Wednesday, August 9, 2000 - day 31
Today Jake wasn't in his bed when I got there, he was in his chair, wrapped in blankets, no glasses on, just staring. He was freezing! His teeth and jaw were moving a mile a minute. His skin felt warm to me, well not as warm as it usually feels, but not real cold either. His temp was back to normal this a.m.
His stomach was queasy; he didn't eat at noon. Well, one bite of chicken and two cherry tomatoes. He said his throat hurt. Felt like the trach was in wrong. RT inspected it and said it was ok. Stomach really bothering him.
Dr Waring visited him. It is very reassuring to know that Dr Waring is there. He seems to be on the unit all the time. He examined Jake and discussed some options with him. Jake is on Vicodin now, and ibuprofen. It could be that all those meds are causing an upset. Jake might have to decide between the pain and the upset tummy. Especially since he won't eat. Putting food into his stomach would help him very much, but it hurts to swallow. Back to square one.
Jake wants the pain meds every 4 hours, and since Vicodin has Tylenol in it, every 4 hours is too often for safe dosage of Tylenol. So he gets ibuprofen in between the Vicodin doses. Jake says his neck and shoulders are still very painful. Jake is going to get Darvon for a while.
The doc is also going to have Jake's urine cultured; he could have a urinary tract infection. He still has a Foley catheter in; an infection is not unusual with indwelling urinary catheters. I kind of thought (hoped) Jake might escape that since he drinks a very large amount of water every day.
Rumor has it that the trach might be pulled tomorrow, but he still is being suctioned every morning. I'm not going to hope one way or the other. The doc knows best; it'll come out when he says it should.
Dr Waring is very patient with Jake. He answers all our questions; he's never in a hurry to leave. It is this kind of thoughtfulness that makes me feel reassured when Jake takes a dip in this rollercoaster of life he is on now.
The only thing that truly frightens me is when I don't know why something is happening, and no one can explain it to me. Or worse, no one seems concerned about it except me. It usually turns out that my concerns were for something that is a common event in a spinal cord injury patient, but I don't know that until someone tells me it is so.
Once you know what the problem is, or what you have to fight, well that's half the battle. Or someone who knows about these problems says, "that's not an unusual thing to happen in these circumstances". That's all I want to hear.
Tomorrow is going to be a good day. I just know it. Thank you for your prayers.
Thursday, August 10, 2000 - day 32
Jake has a urinary tract infection (UTI). I'm relieved to know that; you can fight a UTI. Terri reports that Jake spent yesterday (Wednesday) afternoon sleeping; his fellow patients went to the zoo. He'll go next time.
Today when I got there he was in his chair, watching TV. Probably the first time I've seen that TV on in 2-3 weeks. He was dressed. He looked good. How can one day be so completely different than the next day?
The dietitian visited Jake today. She put him on a regular diet; seems he has been on a regular-thick diet, getting all the cream soups, milk shakes, gooey stuff he can't swallow. Now he'll get the Jell-O and clear soups he wants. Terri has been giving him cup-o-soup, he likes that. He ate about 1-1/2 swedish meatball but choked on the noodles (but he tried them - that's my old Jake, he'd try anything... once). A spoonful of corn. Then he tried the lemon part of lemon meringue pie and that was a bad choice. He loves it so much he couldn't resist. Of course, he choked on the thick lemon pudding.
One of his new friends, Jeff, went home today. He and Jake exchanged addresses. Jeff was always there to encourage Jake, and Jake is going to miss him. I'm going to miss him too.
Jake and Terri met with a DVR representative today. That is a state agency, the Department of Vocational Resources. They have arranged a meeting for Oconomowoc school officials to come to Froedtert and meet with Jake's therapists. They will watch a session. Then they can judge how Jake will interact/manage on the OHS campus. He will be a senior this year. Home schooling is planned for a while since school starts in less than 3 weeks. The goal of the DVR is to help Jake find employment after graduation.
Today while I was feeding him I also was rubbing his arm. It's a habit that I got into right after the accident. It made me feel better if I could touch him. Well today he said, "you know, I can feel that". It was his right arm. I asked him if he could feel it before today, and he said he didn't know. I couldn't investigate this further, but will tomorrow.
Jake was very tired today, but was more like the Jake I know. The last two days frightened me. I can't even begin to tell you how much your messages and personal stories have helped me get through this. Just knowing that Jake's turns, both good and bad, are the norm, not the unusual, make me able to go into his room each day with a smile.  Didn't I tell you that today would be a good day? Thank you for your prayers.