| July 25, 2000 - Day 16 Jake was off the ventilator for 3 hours yesterday. Today it was 3-1/2 hours. He wanted to stay off longer, but the respiratory therapist says she wants to strengthen his lungs, not tired them out. |
| He keeps spiking temps. 101.8, 102.3. Dr Waring, who is his primary physician now, says it is probably chest related. He still has the pneumonia, but he is being suctioned much less than before. |
| They are going to get an ultrasound of his legs to make sure he is not developing blood clots. I gather this is rather routine, because of his immobility; but they also mentioned the fever. |
| He was in bed all day today - no chair. Mainly because of the ultrasound. The docs want the test before they put him in his chair. Well, he liked that, because he does not like that chair. The test kept being postponed for one reason or another. Since he is on a ventilator, a nurse or RT person has to stay with him in x-ray. |
| The staples in the back of Jake's neck came out this a.m. That made him happy. |
| Yesterday they stopped tube feeding. They figure if he gets hungry enough he'll eat. Ate a little last night (Monday), no breakfast, a little lunch today. I would guess about 1/8th of his tray. He had ground turkey (I couldn't help it, when Terri said ground turkey, my lip curled - he saw that), mashed potatoes and gravy, fruit cocktail. He actually said the turkey tasted better than the beef did from Sunday. He drank a lot - cranberry juice, milk and water (no, not all together). After about 15 minutes he was very uncomfortable. Said he ate too much. He probably consumed about 150 calories from the food and drink. |
| They want to put a smaller tube in Jake's tracheostomy. He has a #8 in now; they are going to replace it with a #7. Then he will be able to talk. |
| He was not extremely happy today. He was
cold. This is unusual because he is in a very warm room, and more often than
not he complains of being too warm. His face, his whole head, itched today. It drove him (and Terri) crazy. At first I thought it might be a drug reaction, maybe the Percocet, but it's only his head. His shoulders/upper arms don't itch. That is terrible, to itch and not be able to scratch. At one point he raised his arm in a futile attempt to scratch, and ended up hitting his chest real hard (he had the splints on). The look on his face made me wish I had my camera. To be truthful, I burst out laughing. |
| During his occupational therapy session the therapist explained that Jake has biceps, but not triceps. He has shoulder and elbow movement - he can raise his arms but it is very difficult for him to lower them. He cannot hold his wrists erect; he has some feeling in his thumb. It seems that each joint is related to a different vertebrae. He is rated as a C-5 injury. |
| Jake is still bothered by a sore on his lower back. He must be moved from right side to left side every few hours. He is not supposed to lay flat. This is a minor sore; they do not want it to become major. That is why they keep moving him now. |
| Terri reads a few cards and emails to him every day. He enjoys this very much. Thank you for all your correspondence. |
| I printed his web page updates from Sunday. He is finally aware of the fact that there is one. He grinned from ear to ear when he saw the pics of himself - and he liked it when I read him the page. He could read it himself, but my arm gets tired holding it out in front of him! |
| Every week each patient on the spinal cord injury floor (SCIC) has a team meeting. This includes everyone who has a role in his care, plus Jake and his family. There were 17 people there, including us. |
| Among the things mentioned (I wrote as fast as I could) were: |
| he is going on a regular diet - PIZZA, anything. We just have to tell the nurses if we bring anything in for him. Maybe he'll get an appetite now. No more ground turkey. |
| needs the trach downsized - I mentioned that earlier. |
| he absolutely needs to be in that chair more. |
| Jake is anxious about leaving his room. They are going to work on that. |
| his stay, because of his chest problems, will probably be 6-8 weeks. |
| pneumonia probably from the lake water (Jake asked that question) |
| all of his lab values are pretty normal except his white blood count is slightly elevated |
| his whole right lung is collapsed |
| A lot more was discussed, but that's the gist of it. These team meetings are held at the same time every week. This is a fantastic concept. Everyone involved in his care! From the primary physician to the social worker, chaplain, psychologist, PT, RT, OT, speech therapy, nurse, even the person who maintains contact with the insurance provider. There were 14 professionals there, all involved in Jake's care. And we could ask all the questions we wanted. I find this mind-boggling! One of these days when news is slow, I'm going to devote a whole page to the incredible care that Jacob, and all of us, have been given at Froedtert Hospital. There is total involvement; total commitment. These are dedicated, caring professionals. |
| I have found that he is able to keep his arms "palms up" now. He makes a point of showing me this every once in a while. And they are closer to his body. They took the needles and iv's out of his right arm yesterday. I don't know if that's the reason, or if the PT (physical therapy) is making him stronger. In earlier days, when I would move his arms to the palm up position, they would slowly migrate back to a "handshake" position. Now they stay where I put them. He can even turn them a bit himself. |
| Thank you for your prayers. We still need them. We have just started on a very long journey, with Jake in the lead. God is carrying him right now. God is carrying all of us right now. |
| July 26, 2000 - Day 17 Jake kept spiking temps last night. A little worrisome. But he slept well. In fact, nurses said he was so tired that he almost slept through his therapies. They put a cold pad under him. It was hooked up to a machine. Generated cold. Today, at noon, his temp was 98.8. |
| His shoulders are extremely sore... from the therapy. Sandy, one of the therapists, showed us how to massage his upper arms/shoulders to relax them. She said that painful shoulders is a common complaint with spinal cord injuries. Jake is keeping his shoulders too tense. He needs to relax them. He has to think about relaxing them. |
| He was disappointed that I did not bring my camera today. He took a drive in his chair. He has a control on the right side, sort of a "u" shaped object that he must lay his hand on. He needs to work on that, but once he had his hand on the control, he was able to maneuver the chair quite well. |
| He ate a little more today. Some Italian chicken and noodles, 2 slices of peaches and 1/2 carton of chocolate milk. He ate in the SCIC dining area. He cannot yet feed himself, but that is one of the goals. First we must lick this darn pneumonia. |
| He has the smaller, #7, trach tube in now. He did NOT like that procedure. He can talk fairly easy now, when he's off the vent. When they put him on the vent they must put the cuff down so he can speak. This allows air into his throat so speech is possible. He doesn't like this because it's very uncomfortable. So consequently, when he is on the ventilator, he cannot speak. |
| His trach is very painful today. The smaller tube is causing him problems, it's more painful. It was explained that it is like trying to fill a hole with a plug that is too small. I don't understand the mechanisms, I'm just reporting what I was told. |
| Jake was off the ventilator for 4-1/2 hours today. When they finally put him back on, he fought it. He didn't like the large amount of air he was getting. This is because he takes shallow, small breaths when he is on his own, and the ventilator gives him normal breaths, like we take. He had a bad coughing attack while he was off the vent. Now I know why this terrifies him. It terrified me, and it wasn't happening to me. The physical therapist, who happened to be in the room, "cough assisted" Jake, then he needed suction. |
| PT is firm - we were warned this was not going to be easy. Right after the coughing attack, he had Jake in the hallway, driving the chair. Jake was very weak, but he managed fine. |
| They put a binder around Jake's lower chest/stomach today. He likes it. It makes his dizziness go away. Yeah, I needed that explained to me too. The chest binder, and the leg bindings, help the blood move through his body. It helps his blood pressure to stay up. When we get up quickly, our blood pressure drops, but then rises again. When Jake sits up, his blood pressure drops, and stays there. His blood needs assistance in moving through his body. |
| He is much calmer about leaving his room today. I think he didn't want to be away from his ventilator. He feels safe in his room. |
| The Doppler (ultrasound) he had yesterday was negative. That was good news. |
| Jake has three incisions in his abdomen and we can't figure out what the 3rd one is for. So far, everyone we have asked does not know, but they said they'd read his chart and find out. He had a thoracocentesis (when he had the pneumothorax) and he had a gastrostomy (for the feeding tube). The third incision is almost in the middle of his abdomen, next to the gastrostomy. I figure maybe they needed two incisions, but one of the docs said that normally that isn't the case. She said maybe he had a laparoscopy, but I don't think so. Doesn't make sense, and anyway, that incision is too big for a laparoscopy. I'll get back to you on this one. |
| He sat in the chair for a long time today, but I didn't find out how long. |
| From now on he must go to the dining area to eat lunch and dinner. He is allowed breakfast in his room. This is good for him, and he will enjoy this to the max when he unloads that pneumonia, and ventilator, and is able to talk. My Jake loves to talk. :) |
| Dr Waring says Jake's right lung sounds better than it did yesterday. He is now off antibiotics, as he has finished the regimen. If he spikes another fever, they will do blood cultures. I pray this doesn't happen. Jake does not need to fight sepsis, along with pneumonia. |
| Right before I left, Jake motioned to the window. Old eagle eye had spotted Flight for Life and he wanted me to see it. (he knows I have a passion for helicopters and airplanes) I said, "they are going to get someone who is sick or injured". He said, "they are lucky", referring to the patient. He has a fantastic attitude right now. With God's guidance, he will retain this in the days and weeks to come. |
| Tomorrow I will take the camera again. Told Jake I'd take some pics of him doing wheelies in the hallway. :) |
| July 27, 2000 - Day 18 Today Jake told me to get my notebook out and write this down. "I was off the vent for a total of 11 hours yesterday. 5 hours in the morning and 6 hours last night." |
| Today they want to see if he can go all day. They took him off at 7:30 a.m., and at 2:30 p.m., when I left, he was still doing fine. |
| Jake spiked a temp early this morning again. At noon he was back to 98.8. No blood cultures done yet. Now they say they will culture his urine again. If he spikes again, they will put him on another antibiotic. It confuses me a bit that the different doctors say different things about his fever spurts, and treatments/diagnostics. Today one of the physicians said the fever is probably due to his body trying to regulate it (his temperature). I don't buy that. Jake asked me why. He liked that answer. Well, if that were the case, why were they trying to find a reason for the temp spikes? When it first happened, they said nothing about his body trying to adapt. He agreed with me once he reasoned it out. A fever is an indication that there is something wrong in your body. It is not an illness or disease, it is a symptom of an illness or disease. |
| He didn't get up to his chair while I was there so the pics will have to wait. I promised I would bring my camera every day. Yesterday he was in his chair for a good portion of the day. Today he still hadn't made it there by the time I left. His life is like a rollercoaster ride. One day up and the next day down. |
| Dr Waring is going to supplement Jake's caloric intake with tube feedings at night, about 1000 calories. At least until Jake starts eating more. I brought him the first 3 cherry tomatoes from our garden. He savored them; ate them slowly. (he ate them slowly because of the trach tube, but he still enjoyed them to the fullest). I'm going to have to search the plants each day for him. For lunch he had 1 swedish meatball. He did not eat breakfast, the fever put him out of sorts. |
| His throat is starting to feel better, and it is easier for him to swallow around that #7 tube instead of that #8 tube. I guess we must remember that he is very weak, not only from the fever, but from lack of calories. |
| He said that a sub sandwich sounded good. All the food sounds good to him. He mentioned fried rice, a pizza, etc. But he has to work so hard to chew, then swallow (past that darn trach tube); he gets pooped after a few bites. Last night Dr Waring brought him a couple pieces of pizza. He had 3 bites. He enjoyed it, but that's all he could eat. |
| It just occurred to me that he ate lunch in his room. He didn't go to the dining area. |
| Jake was very thoughtful today. He talked a lot about his future - what he would be able to do, what his limitations would be. He has a lot of positive thoughts. He is so weak that he can't get fully into his therapy yet. I think once he is healthy, and eating properly, things will go better for him and he will be able to concentrate on setting, and reaching goals. |
| The pneumonia is almost gone. X-ray still sees a small infiltrate in right lobe. |
| He claims he can sometimes feel it when someone touches his right toes. I don't know what to say when he says that. |
| We could pray that he's right. |
| Friday, July 28, 2000 - Day 19 When I arrived in Jake's room today he announced that yesterday he was off the vent for 15 hours! Doc thinks that if this keeps up he might be weaned completely in 2 days. What great news! |
| He didn't eat any breakfast again this morning. When I asked him why, he shrugged his shoulders (gently) and said "I don't know, just didn't". Then it occurred to me that he never really ate breakfast before the accident. He'd want to be up and around for a couple hours before he ate. |
| Terri brought him a sub. He was so excited. Took one bite - couldn't swallow it. I felt very sorry for him. He wanted that sub so badly. He's hungry. The bread was too hard to swallow. He has a lot of phlegm in his throat, and he can't clear his throat like we can. He doesn't have those muscles working at full strength yet. When he tries to clear his throat, it is not painful for him. It just takes more muscle than he has right now. Try clearing your throat. Then you will see just how many muscles you use just by that little effort. Now try clearing your throat, but don't use any muscles below your shoulders. That's Jake's dilemma. |
| The soup for lunch was a cream soup, and that made his throat thicker. So Terri found him some raspberry tea. That seemed to help. He ate his salad, and the canned pears. |
| When Jake is off the vent he has the sense of smell. When Terri made the tea, he grinned because he could smell it. We tend to take everything for granted until we lose it. |
| The doc says that Jake's lungs sound clear. He still has major problems coughing. Asking for "cough assist" a lot. Terri doesn't want to tackle that yet. I don't even like to be in the room when he gets that. |
| Four times a day he gets breathing treatments. He likes them because it clears his lungs. He can breathe easier afterwards. Air is pushed (by machine) into his lungs as he takes a breath. There is medication in the air. It forces Jake to take a deep breath. |
| When Jake is sitting in the chair his position must be moved every ten minutes. (That is, forward or backward). It's called "pressure relief" and it's his responsibility to remember this. He saw a short presentation on bed sores today so he is willing to do this. Even if he is only moved an inch or so, it makes a difference. This is when he is in the chair. When he is in bed, he is positioned leaning a little to either side. |
| Dr Rao stopped by today. He said that recent cervical x-rays show excellent positioning. He thinks that Jake might be out of that collar in 3 more weeks. Jake is lucky. A lot of spinal cord injury patients need that collar, plus a halo. Dr Rao predicts that Jake should get 80% of his head movement back. I never thought to ask him what head movement that would be. Next time. Dr Rao told Jake that he looks 150% better than 4 days ago. |
| Terri had been testing Jake when Dr Rao walked in. It seems Jake still claims that he can feel it when she pinches his right toes. Well, she put a pillow in front of him so he couldn't see when she did this. He got it right all the time. Then he said that they were tingling again; she squeezed too much. Dr Rao just gently brushed his fingers over Jake's toes, but Jake was done for the day. Too much "tingling". |
| Even though Dr Rao is not Jake's primary physician anymore, he still comes and visits with Jake. Talks to us, answers our questions. He said he will follow Jake's care until he is ready to be discharged home. |
| Jake drove his chair completely around the
unit today. I'll count the steps tomorrow, but it's a good distance. Didn't
hit anyone. Almost took off his hand once when he got too close to a door
handle. The physical therapist is having him use his right arm because it is
stronger, and also because that is his dominant hand. PT said he wished he
could alternate Jake's driving hand; it would be good for Jake, but that
takes a lot of moving and switching things. He needs to get an arm rest for
his arm. Half way through his excursion, he needed someone to hold his elbow
so he could drive. He now has a "sip/blow" air manipulation system that is more sophisticated than his other one. The occupational therapist, Paul, set this up for him. Jake can answer the phone (speaker phone), call the nurse, turn off the light, use the TV and raise/lower the head of his bed. |
| For dinner tonight Jake ate all his catfish (he loves fish) and two small salads. Every bite was followed by a drink. He handled his dinner much better than the sub sandwich. His intake is still being supplemented by nightly tube feedings. |
| This was a good day, thanks to God, and your prayers. Thank you. |