July 29-31, 2000
| Saturday, July 29, 2000 - day 20
Jake has had better days. Today was a dip in that rollercoaster I mentioned a while ago. Again, he did not eat any breakfast. "They bring it at 7:00 in the morning!" OK. For lunch, he had a small bowl of watermelon. He complained of feeling very weak, very dizzy, and he had a headache. |
| Last night went well. Jake was off the ventilator from 7:30 yesterday (Friday) morning until 2:00 a.m. this morning. He went back on the vent till 7:30. So in the past 24 hours he was on the vent only 5.5 hours. Tonight they are going to see if he can go all night without it. |
| He is still having a very difficult time swallowing food. He has a tremendous buildup of phlegm in his throat, and it is hard for him to pass food/liquids past the trach tube. When he is in an upright position it is even more difficult for him. (I would think it would be the opposite) He also complains that the tube feels like it is crooked when he sits up. |
| Dairy products immediately produce an over abundance of phlegm, so unfortunately, the milk shakes and creamed soups that would be so good for him, are hurting him instead. We tried to coax him to sip some soup broth, but he objected to the taste. I guess I don't blame him on that count. |
| He was told we could take him outside for a little while today, as long as we knew how to bag him if that was necessary. Because of his dizzy, weak state Terri and I were apprehensive about that. Jake agreed that today was not a good day for going outside. And he was so excited about it at first. He also agreed that maybe tube feeding would be appropriate for a while. That one back-fired on me; I used it as a subtle threat. |
| Occupational therapy worked with him for a while today with an "adapted fork". It's like a small arm brace that can be fitted with a fork. They worked at stabbing the watermelon, and putting it into Jake's mouth. He did most of the work, the therapist only helped hold his elbow. Jake did quite well, considering this was the first time. He told the therapist that he was afraid that he would stab his face. The therapist said "but face-piercing is in this year". Jake may have been grumpy, but that got a laugh. |
| Later Jake will have a helper with his adapted fork. It is a contraption called a BFO. Balanced forearm orthotic. It works on a pulley system to assist in getting food to his mouth. First they work on Jake's muscle pattern, which means working his usable muscles to his best benefit. Right now Jake has to think about how he is going to bring his fork to his mouth. Once he learns this, it will then come naturally to him. When we sit down to eat dinner, we don't think "now I must pick up my fork, then I must stab the food, then I must raise the fork to my mouth", we just do it. That is the goal for Jake. To do it automatically. |
| OT also suggested bringing in a board game like checkers or chess so Jake can learn to concentrate on the game, and winning, not on how to move the pieces. |
| It was also mentioned that a little caffeine in the morning might help Jake's dizziness. My guess is that a little food would help too. :) |
| He again drove his chair around the unit. I paced it. It is about 600 feet all the way around, back to his room. |
| We are all entitled to off-days. Hopefully, Jake's will become less frequent as time goes by. He did accomplish things today. Got his first taste of eating with a fork (pardon the pun) and he took another swing around the unit in his chair. No wheelies yet. :) |
| Sunday, July 30, 2000 - day 21
Jake has been off the vent since yesterday morning (Saturday) at 7:30 a.m. The next 48 hours will tell whether or not he can stay off it. They will monitor his oxygen levels, and how he is handling his breathing. If everything stays stable, and his suctioning gets better, they will pull the trach tube by the end of the week. He still needs suctioning, but it is less than half of what it used to be. |
| He has a toothache. On the bottom - probably his right eye tooth. Froedtert doesn't have dentists here, so we are going to have to find a dentist who will come to the hospital. His regular dentist is in Oconomowoc, 30 miles away, so we will have to find someone closer. It's not the same tooth that was loose. That one seems to be ok now. |
| We got Jake's menu for today in too late yesterday, so they brought him a regular tray. It had a milkshake on it. Jake asked Terri what it was, so Terri opened it up and motioned toward the bed with the cup in her hand. Well, the top part stayed there, but runny milk gushed out from under the top crusty part. All over the floor. Jake started laughing and couldn't stop. His upper chest started hurting (right below his neck) but he still couldn't stop laughing. Terri cleaned it up best she could but all day her shoes made a sucking sound every time she walked. Well that kept cracking Jake up too. |
| Today was a much better day than yesterday. The lunch tray had pot roast, mashed potatoes and carrots, the ill-fated milk shake, and a cherry cobbler. He had a fair-size chunk of the meat, and about 3-5 carrot coins. No potatoes, that doesn't go down well. Then he said that was enough. We were satisfied. It sure was better than yesterday. |
| Jake has developed an open sore on his tailbone. About the size of a pea. He complained to PT that the chair gave it to him. PT asked him what he had eaten yesterday. PT knew that Jake had not consumed much; his balanced diet is off the scale! |
| PT explained that there are 4 key elements for good skin control: |
| keep it clean |
| pressure relief (I explained this yesterday) |
| a good cushion |
| a well-balanced diet |
| A well-balanced diet is essential for quality skin control. Well, Jake knew he lost that round! He really tried today though. And tomorrow he ordered chicken. He loves that. We also asked Dr Waring if Jake could get a multi-vitamin. No sooner asked, then done. |
| Jake drove around the unit again. This time PT didn't come along. Just Terri, me, and Klaas and Sue, Jake's Big Brother and Big Sister. |
| Jake asked me to remind everyone that his phone is a speaker phone. Everyone can hear the conversation. Also to give him lots of time to answer the phone because he may have to go through the whole menu before he gets to the phone selection. |
| Monday, July 31, 2000 - day 22
Oh boy, what a day! Sometimes it would be nice if God would say to you in the morning, "Now today is going to be a rough one, but I never give anyone more than I know they can handle. Just thought I'd warn you". |
| The visit started out normal enough. Jake's trach tube is bothering him very much. He didn't eat much lunch. 1/2 slice canned pear, some apple juice, 2 bites of corn, 2 bites of roast beef. He says the tube feels like it is dislodged, or crooked. It's very difficult to get food around it. Jake is very hungry. The trach gives him too many problems with swallowing. He almost choked on his pills today. Most pills go through the feeding tube, but he is trying to swallow the smaller ones. Imagine trying to swallow something while someone has a choke-hold on you. I guess that's the closest I can come to try to explain his problem. Also imagine a big open wound in your neck. |
| After lunch Physical therapy came to give him his first intensive dose of therapy. You know, there are no surprises here. They warn you about everything that is going to happen. They told us therapy would be tough. |
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As you can see, Terri and I did not do our job very well. He is in extreme pain. |
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| Jake has not seen these photos; he was exhausted when I left and I didn't want to bother him. But I asked him if I could share a few with you and he said he didn't mind. |
| I am very proud of Jake. He never asked them to stop, he continued to follow their direction, their requests until they stopped the therapy. He said he would be ready for the next session. |
| It is extremely difficult to see someone you love in so much pain. To see him sprawled on that mat like a rag doll, not being able to do anything for himself. |
| There was good news. There is always some good news. The docs are so confident that Jake will not need the ventilator anymore that they removed it from his room. The trach will stay in for a while just in case. He has not been on the ventilator since last Saturday a.m. but he still is being suctioned. (not as much as before, though) |
| Terri did her first "cough assist" today. Jake told her it wasn't hard enough. |
| Thanks to God and your prayers Jake is getting stronger every day. The progress is very slow, but it is progress. |
