September 16-30, 2000

Saturday, September 16, 2000 - day 69
"Now that's the Jake that I remember!" This is the comment Terri received from the night nurse when Terri called this a.m. to check on Jake's progress.
Terri said that the minute she walked into the recovery room last night she knew that Jake was better. His speech was not gurgling any more. He got rid of the marbles! His face looked better; not the sick gray look that had slowly crept into his face over the past few weeks. This a.m. the nurse reports that Jake's temp is normal.
The docs removed a lot of pus/junk from his neck area. He also had a scope procedure which showed a small tear/hole in his esophagus.

 
Continuous tube feeding started early this afternoon. After a couple hours the RN checked, and Jake seems to be digesting it ok.
He is allowed up as soon as he wishes. I thought tomorrow would be a good start. Then we could go to the multi-purpose room to watch the Packers. (it's a big TV)
We are anticipating that Jake will return to therapy on Monday.
I had another lesson from OT about ranging Jake's arms. OT is very patient with me, explaining what to do, and why. I appreciate that.
As mentioned previously, Jake can eat or drink nothing for one month minimum. We pour soda or water into his mouth, to freshen his dry mouth, then he must spit it out into the suction hose. He must also spit out his saliva. Today he was still coughing up phlegm but the doc says that will become less each day. The problem now is that he cannot swallow anything, so the suction hose must be made available to him. It's possible to affix it to the nurse call puff straw, but it is very noisy, and that bothers Jake. Also it is constantly sucking air into the hose, and that makes his mouth dry. So hopefully, this annoyance will soon subside (the excessive phlegm).
Eventually he will regain 80% of head movement, but right now, with the recent surgery, it is too painful for him to move his head more than an inch to right or left because of the incision. So he cannot leave the puff straw on the side and then just move his head to capture it with his mouth. In a week or two he probably could do this.
Today Jake was more like himself. Joking and laughing with me and with the staff. He actually started planning his first meal when he gets home! After he had received tube feeding for a couple hours they gave him some pain meds (Darvon). Then he started getting a little tired.
So did I. I left at 4:00 when Terri arrived. (2nd shift).
Thank you for your prayers. They worked again. :)
Sunday, September 17, 2000 - day 70
Jake didn't get into his chair today. We watched the Packers in his bedroom. I told him that this was a special occasion - we were celebrating his recovery. Next week we'd go to the multi-purpose room to watch the Packers. It's too hard on my neck. That TV is definitely placed for the patients comfort. Anyways, it's more fun watching a football game with lots of other people. It just occurred to me that maybe my actions during a football game may embarrass him. I really don't think so, but I'll ask him. I get a little vocal sometimes. I like the game. :) Actually I'm rather passive - his mother puts me to shame when it comes to vocal/physical actions during a game. I'm a fan; Terri's a fanatic. But I digress...
Jake's coughing is slightly less, but his secretions are way down. This is good news.
The ENT docs insist on changing Jake's dressing, so it is done once a day, in the a.m. Today when they removed the dressing they removed a lot of junk from the drain. It completely grossed Jake out. It was the odor, but also Jake made the mistake of looking at what they removed from the drain. Now you have to agree that it takes a lot to gross out a 17 yr old boy. :) It must be bad.
Jake was very social today. Kris and Mark visited for quite a while. He joked with us; had a good time. He enjoyed watching the football game with us.
I left on a good note. I'm not visiting tomorrow. He handled that news a lot better than I thought he would. It is becoming very difficult for me to manage 40 hours at work and visiting Jake every day. I still have to make room in my week to move many many items in our house. And of course uploading this page every day takes a little time also. What's left? Oh, eating and sleeping. :) Well, since Jake doesn't need me there to help him eat, I decided to visit on Tuesday and Thursday, and work longer days on Mon, Wed and Fri. Then I won't have to work every day of the week and I can still visit Jake on both Sat and Sun. Sounds like a good plan.
So there will probably not be a report tomorrow unless Terri leaves me news when she comes home tonight.
Tuesday, September 19, 2000 - day 72
Not a good day for Jake. He is still fighting the nausea. This is partly due to the draining of the fistula. Some of that junk is probably finding its way into his stomach.
He was in bed when I got there, pretty much out of it. They had given him Ativan, and a couple of stomach meds too. He was also worried that I would be upset that he was still in bed. :((
I should not be one of Jake's problems. That makes me no better than the insensitive, belligerent, uncaring PT person that Jake was unfortunate enough to get as his main therapist. (just one, all the rest of the therapists are pretty special people)
The other part of Jake's nausea is due to anxiety and fear. He is anxious to please everyone, yet he is very weak; he has no confidence in his ability to physically perform the duties we request of him - perhaps we must move a little slower, set our goals a little more realistically. The pressure (from us, and hospital staff) to perform is making him ill.
The fear is of the future.
He is getting full nutrition from the tube feeding, and so far, he is digesting it ok. I am hoping he will gain some weight. The other day an aide said "Jacob, you could hula-hoop in a cheerio!"
I won't be visiting tomorrow. Long work day for me. Next report will be Thursday unless something comes up.
4:00 - I just finished talking with Terri. Team meeting today. Jake has four different "bugs" in him. I told Terri she must find out the names of those "bugs" and where they are - in the drain, the urine, the blood?
When I left Jake he was sleepy but not hot. When Terri got there about 2 hours later he felt hot so she took his temp; he was running a 102.8 fever. They gave him Tylenol and are taking more blood cultures and a chest x-ray.
It has been recorded in Jake's record that he is non-compliant with his therapies, I guess since last Wednesday, when the infection in his throat succeeded in taking over his body and leaving him bed-ridden. This is so ludicrous that is it believable.
Terri was also informed that it was Jake's fault that his legs weren't ranged for the past 5 days. He should have told someone that he wanted it done! I guess we need to find someone who will stay with Jake 24 hrs a day, and co-ordinate his care so that when he is burning up with fever, or throwing up, or trying to forget about his pain, or completely out of it because of the "bugs" in his body, someone can remind him that it is another day, and he needs to request ranging, meds, etc. Oh, and he must trot on down to PT, too. (Must not be non-compliant).
We are fully prepared for them to tell us that it was Jake's fault that he has a fistula and needed the surgery, but it still hasn't come - want to bet it will?
Sometimes we wonder who is on the patient's side.
Thank you for your prayers. Please put one in for a very frustrated mother and grandmother who love Jake more than life. We look at Jake in his bed and we see someone who needs a lot of help. Not fault-finding.
Thursday, September 21, 2000 - day 74
Terri left me a note this a.m. :
Mom,
Jake was in good spirits tonight. (Wednesday night) He was in his chair for an hour and five minutes. He's very dizzy from laying in bed for a week.
The doc said that what he's feeling now may also be "aftershock" from the surgery. The antibiotics (he's on three) should start working pretty soon now. The "bug" doctors were in again, but didn't have any new news for me. They just asked Jake a couple questions on how he felt and left again.
Also, Jake's temp has been normal for 24 hours now! Plus no vomiting today!
Love, Terri
I'm afraid that's about all the news I have for you today. I visited Jake - we had a good visit. I'll post a longer report tomorrow. I'm tired.
Friday, September 22, 2000 - day 75
I have drawn a very, very basic sketch (I do not have a pen, used the mouse) of Jake's problem fistula. A few people have asked me what it is. A fistula is an "abnormal passage" or "pocket".

 
1... the site of the tracheostomy, also site of the drain from the most recent surgery (last Friday)
2... trachea, (windpipe) leads to lungs
3... esophagus, leads to stomach
4... the fistula
5... spine
red horizontal rectangle is the drain that was placed last Friday - this may not be in the correct spot, but it is from the fistula through to the skin on the front of Jake's neck.
It isn't drawn to scale, but the fistula is about that big, from the drawing the ENT doc did for me.
As you can see, the small hole in the esophagus formed a pocket (fistula) between the vertebra (spine) and the esophagus. Every time Jake swallowed something some of it got caught in the fistula, and brewed... probably for close to 4 weeks.
It brewed:
staphylococcus coag +
strep milleri
streptococcus viridans
and last, but not least... candida (yeast)
So maybe, just maybe, this is why Jake's had nausea and vomiting for the past 4 weeks? Why his throat was constantly sore? Why he didn't want to swallow anything? Why he slowly kept going down hill... until by last Wednesday (09-13-00) he was too weak and too sick to get out of bed. This is probably about the time that PT labeled Jake as refusing his therapies; being non-compliant.
Jake's vomiting has finally stopped, but he still has a lot of nausea. They are still draining a lot of junk from the fistula and I guess that might be the source of most of his nausea. At least I hope so. Right now he is on 3 different antibiotics. One of them has got to help him!
Yesterday Jake and I went outside for a while. If you recall, it was a beautiful Wisconsin autumn day - sunny, breezy and about 60 degrees. (and typical Wisconsin weather - today it is 50 degrees, raining all day). He just sat there and smiled. We had to go back in before either of us really wanted to. I had forgotten to check his Foley bag before we went out, and it was full. Believe me, I was sorely tempted to just "accidentally" empty it into the bushes, but I couldn't do that - but not why you think. :) They are closely monitoring his intake and output and I didn't want to screw that up.
Now that Jake is not allowed to eat anything he is constantly talking about food. We are planning his first meal at home. His first meal in the hospital. His first drink of water... "I'm going to drink 3 gallons of water". (he loves his water)
He's talking about returning to PT (slowly - I don't want problems. We are going to go at his pace, I don't care if he's labeled "non-compliant". Jake's going to do it his way). He's talking about how he'll go out with his friends "they can toss me in the car, put my chair in the trunk". The good news is that he's talking about the future. That is fantastic news. :)
After we returned to his room, PT gave me a lesson in transferring. I let PT do the actual transferring - I am very afraid that I will hit his trach and/or the drain. I asked PT if there was a dummy I could practice on. Both PT and the RN looked at Jake. He cheerfully protested. :) It is so good to have him back again. :))
Saturday, September 23, 2000 - day 76
This a.m. Terri reported that Jake got up for his daily cares yesterday a.m. He got into his power chair for 4.5 hours. He even started back to therapy. Everyone greeted Terri with smiles and good news about Jake's progress... the RN's, PT, doc, aides - even the patients! They were all bragging about how well Jake did that day.
Today Jake had some therapy. He worked his arms on the skateboard. I've posted pics of that in previous reports. Since it was Saturday, that was all the therapy he received. Which was probably the best for Jake, since he's starting from the beginning again. He's going to have to go slow to start.
Jake and I watched the Badger game (it was a good game until the end :( .
3 of Jake's fellow patients have left. Two went home and one, Nick, left for a week, then he's coming back. All of these friends arrived after Jake. He sure is going down a rough road. BUT, I think that road has just become paved... here's to smooth driving for Jake in the recovery/rehab stage of his life.
I need to make a correction to the drawing I posted yesterday. I found out today that the drain was not left in Jake. They drained the fistula, then they packed the opening with gauze - this is what the docs change every day. So that red rectangle is the passage they made to drain his fistula, but the actual drain is not in him now.
The RN said the opening is pink, the edges healing healthy. Jake reports that his nausea is still there, but much less than before. It this the beginning of recovery for Jake? Yes.
Wednesday, September 27, 2000 - day 80
Jake is going to start one of his tutoring classes. Probably 3X a week, 1 hour each day, to start with.
His caloric intake is being increased to 150 cal per hour, up from 100. Yesterday he weighed in at an alarming 104.4 pounds. (He's a tad under 6 ft.)
The trach tube is going to be pulled as soon as respiratory dept. is agreeable to this. Jake started asking about it's removal the Monday after his surgery. He hasn't needed to be suctioned since his surgery. The junk (goop, purulent drainage, whatever you want to call it ) that is draining from his fistula seeps over to the trach tube. It is sticky, and thoroughly grosses Jake out. He wants the trach out. I worry that the drainage will start another infection, maybe his trachea or lungs.
He is going to start all over again with the manual chair. Hopefully, by Saturday or Sunday we will be able to take him away from the hospital for a couple hours. Short trip to the zoo, or even a shopping center or something. Can't take him home because we couldn't get him into the house yet. :)
He is doing so well... both mentally and physically. Once those nasty bugs were discovered and dealt with everything started to change for Jake. Hopefully, now we can start dealing with rehab. His therapy is starting to go full strength. He's doing more and more every day. My goodness, I don't think he's been "non-compliant" yet this week! :)
Since he is feeling so much better, he would really love some company. He can have visitors every day after 4:00 till 8:00 p.m., and from noon to 8:00 p.m. on the weekends. He would sure appreciate it if you would stop by and say "hey". Especially his friends from school. He misses you. :)
Well, here's to another good day tomorrow.
Thank you for your prayers.
Jake's Progress Thursday, Sept 28, 2000 - day 81
Jake's nausea got the better of him today. I think it's a combination of the pain meds and the antibiotics. He was not feeling well at all. Every time he moves the nausea gets worse.
btw, he still went to therapy. :)
Sometime today they are going to insert a "pic" line so that they can remove that troublesome IV. The "pic" line will probably go into his upper arm. I'll try to explain that in more detail on Saturday. The reason for the pic line is that Jake needs to be on antibiotics for the next 6 weeks. One of the meds, Cipro, is not doing its' job, so that was discontinued and they started Bactrim. All these drugs, including the pain meds, are gut busters so that is probably Jake's main source of the nausea. Of course, the second source is the vile junk that is still being removed from his drain site.
Hopefully, we'll have a good report on Saturday.
Saturday, September 30, 2000 - day 83
We did not get to go on our outing today. And tomorrow looks doubtful. Today Jake was in bed when I got there. His nausea is constant, never-ending. After a while it can wear a person down. The docs are changing antibiotics again. They admit that the meds Jake is on are gut-busting. They are not worried about fungal infection anymore, but Staph is their main concern. So Jake is now going to be on Vancomycin and Timentin. Jake must be monitored closely while on the Vancomycin - for both kidney problems and hearing loss. We were warned that they would be taking a lot of blood samples.
We watched the first half of the Wisconsin-Michigan game, then I watched the 3rd quarter while he snored. I left at the beginning of the 4th quarter. I listened to the rest of that awful game in the car. It is very difficult to watch TV in his room because of the angle of the screen. My neck couldn't take any more of it. Jake understood. He felt bad that he had slept. I put him at ease about that.
Hopefully, these new meds will not cause the degree of nausea that Jake has had from the previous drugs. Then he can again try to move on with his life.
The "picc" (peripherally inserted central catheter) line is in his right arm. It consists of a very small piece of white tubing that tunnels into his arm, right above his elbow. It is not bothersome to Jake, nor is it painful like the iv was.