Date sent:11/17/99 09:40 AM
discharge planning...

Good Morning,

News from this end was delayed yesterday because we waited until after 10:00 pm for the resident (Ravi) to get out of surgery to do Dan's drainage procedure. Ravi was not able to get any cyst fluid out that way again. It could be that the cyst fluid is just too thick to come out by this method, and it could be that Ravi doesn't know what he's doing. I give it even money.

Yesterday we talked with Paul Faircloth (the social worker who coordinates the care needed after leaving the hospital) about beginning discharge planning. There are several elements involved here... when we get to leave, what kind of care Dan needs at home, outpatient rehab therapy.

About when we can leave: Dr. Black also came by very late, a little before 10:00 pm, after being in surgery for 12 hours. When I asked about an apparent confusion in our previous conversations about leaving Thursday vs doing 2 more drainings, ... basically asking if we could clarify discharge criterion.... he said, we would see what happened with the fluid that Ravi gets out (assuming he would get some out, which he didn't), also see if Sunday's drainage grew in culture, and look at the next CT scan, and then decide. He will get scanned today. I think I might request that someone more experienced than Ravi try to drain one more time before we say it is definately all tapped out.

About what kind of care Dan needs: He will be going home with the PICC line and IV antibiotics. At the moment it is an antibiotic regimine that needs to be set every 4 hours. This is not a system that is very condusive to home living. So, they will either figure out how to administer the same thing spreadout over 24 hours, or they will change the antibiotic to something more managable. Also, there is an "infusion" company that will come set it up for home use, and teach us how to administer it. Which is ok for the days that I am at home but we will need to figure out what to do for work days. Since Dan's left arm/hand are still weak, he won't be able to do it one-handed.

About the rehab: If he still needs to do the antibiotic every 4 hours (ie the plan can't be modified in some way) then they were suggesting that he get at home therapy for a couple of weeks. We still prefer the outpatient, I think, so we will try to work that out today.

About how Dan is in general: Yesterday and today, Dan has felt slightly nasusious (queezy) and very tired. He is a little nervous because we are so close to being released and that there still may be something wrong. We have tension around wanting so much to come home, and not wanting to leave before he is really ready to come home.

On the side of progress: Yesterday Dan had a great therapy day. He was able to walk with and without his cane, unassisted. PT also brought and exercise bike to his room to use. He really enjoyed that (Does anyone out there have an exercise bike they are not using and would be willing to lend us for awhile?). He was sitting up in a chair for a good part of the day, and had two naps.

For OT he worked on isolating muscle groups. For example, much of the time, he will have his left hand across his chest, elbow bent, and his fingers curl in naturally. If he straightens his arm out from the shoulder through his elbow and fingers, everything goes in the same direction out... So, the next goal is to try to say, bend at the elbow and straighten the fingers or straighten in the arm and bend at the fingers... bringing out the next level of coordination. This work is very hard for Dan and takes an immense amount of concentration. Like everything Dan does, he takes it very seriously and works very hard.

The way they worked on this activity yesterday was to use a small board that is padded on one side and has wheels on the other. That way, Dan rests his arm on the padded side and the wheels rest on the table. He can then push the board around either away or toward something, and the wheels reduce friction. Yesterday the OT had him knock his waterbottle off the table. There was a satisfying THWACK when it hit the ground.

The plan for today is CT, talk with Dr. Black, talk with Paul, try to bike some.... Keep pressing toward the going home type activities.

With Love and Peace, Abi and Dan

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