Sunday, October 30, 2011
Linda is looking very "Linda". She does get tired and has pain, but other times very normal.
She liked the "get well soon" balloon, and enjoyed the news from home (snow storm).
She talked on the phone to family, and seemed to enjoy it.
She is continuing the clear liquid diet, although they let her have some cereal (I don't know how that worked since she can't have milk).
Anyway, another positive report.
PS Donna Anthony drove down Saturday ahead of the storm and also was happy to see Linda so much better.
Friday, October 28, 2011
We (Paula and Barbara) arrived about 11 am. Her appearance was much improved, and she was chatty and more coherent than the last time we had seen her- 2 weeks ago for Paula, and 3 days ago for Barbara.
She demanded food and something to drink throughout the morning, saying she was starving and wanted Hagen Daz. The nurse said she would have to wait until she talked to the doctor. Fortunately, they were making their rounds and came in. The attending doctor said she was responding nicely to the treatment, and therefore they don't feel the need to change her drug therapy to a stronger steroid (they had planned to do so if she didn't improve by today. The doctor didn't agree to the ice cream request, so she settled for the clear, liquid diet plan. She had a few spoonfuls of jello, broth, cranberry juice and lemon ice. I think the anticipation was more exciting than the actual consumption. oh well....it was still the highlight of the day!
The doctor said she really needs to sit up - a chair would be best. But,she wasn't allowed do it without a physical therapist being there. Apparently her heart rate, etc needs to be monitored while she is up since she hasn't,t been out of bed for almost three weeks. We left around 3pm. Physical Therapy hadn't come yet. But Linda was napping when we left. All in all, it was a better visit than either of us was expecting.
When we called the nurses station tonight, they told me that PT didn't come today, but will be there tomorrow. We hope so.
Thursday, October 27, 2011
Dr. Stadtmauer (sp?) came in with 5 residents late in the morning. He said her numbers were good, and she looks great. He noted that her stool liquids were slowing down (good sign), and that they would be adjusting the IV liquids to match that. She has had some swelling in her arms from water retention due to the IV vs stool mismatch, so this should help that. He thought (but did not promise) that she would be able to start eating and drinking early next week. He was generally very happy with her progress. Side note: it was fun watching the verbal sparing between the doctor (from NJ) and the patient (from Brooklyn).
She has been lobbying for the removal of her biopsy stitches, and they did that this afternoon. They also gave her some sugar water IV to counter a low blood sugar.
The afternoon was rougher, with more pain and drowsiness. The PT person came and got Linda on her feet, but the movement seemed to increase her stomach pain. The afternoon was filled with sleeping and discomfort, on and off clarity, and general crankiness. She insisted that I leave around 4 pm.
Visitors should ask the nurses about cleaning/rinsing Linda's mouth, since it gets dry and "cottony" very easily. The foam rubber swabs dipped in ice water help when she is uncomfortable.
Wednesday, October 26, 2011
> The thruway extension becomes simply I 476 at the I 276 connection. Toll Plaza there, stay far left if you have Easy Pass.
> Continue on I 476 going south until you get to I-76 exit. Stay in the left lane of the exit to get on I 76 going East (about 42 miles total from Allentown)
> I 76 east takes you straight into Philly. The left lane exits to I 676 (12 or 13 miles from start of I 76)
> Stay on I 76, and about one mile past the I 676 exit be in the left lane and take the exit for South St. At the top of the exit turn right onto South St.
> At the next light turn left onto Convention Blvd. About 50 yards on is another traffic light. Immediately after the traffic light turn right into the Penn Towers Parking Ramp.
> (they may have that entrance closed. if so, continue forward and around the corner to enter the parking ramp. there will be signs).
> Take the elevators to the Bridge Level. that will lead you straight on over a pedestrian bridge into the hospital.
> There is a security point and info desk not far past the pedestrian bridge, but you can simply continue to walk along the corridor to the end, which will have the Rhoads Pavilion elevators.
> Go to the 6th floor. Linda is second room on the left (room 6002).
Tuesday, October 25, 2011
Linda is looking better, and is sounding more coherent.
She is still occasionally talking in a depressed way ("I'll never get better"), but this will pass as she improves.
The liquid of her diarrhea seems to be slowing down, and is less colored. A good sign.
Pain is still a problem which the doctors are working on.
If her gut does not improve by the end of the week, they intend on changing the med approach.
Generally an optimistic visit.
Monday, October 24, 2011
I visited Linda this morning and have to say that she looked SO much better than last week.
She was much more oriented (although not completely consistently) and was interested in talking and interacting.
She did not seem depressed,only wondering how much longer it will be (no one can say,of course).
She told the nurse to tell me everything so I was able to see her labs. Most of her chemistries are in the normal range although her liver function tests have not changed much in the past few days and remain mildly elevated (this is not unexpected).
Her current team came around when I was there and I was able to speak with them.
At this point it is mainly a matter of waiting for the gut to improve.Dr. Loren said that if it does not by the end of the week they may add some meds.
Lee was there this afternoon:
I arrived about noon. Linda was sleeping peacefully, so I waited. She woke about 1:30, and was quite normal; talkative, animated. She insisted on hearing about all that had been happening in the last 2 weeks (which she thought of as 2 years). Reminded me of names that slipped my mind (very normal Linda).
By 2:30 she was tired again and in pain. They were trying to limit the pain med, but she was not happy, so they have hooked up the self-med pain button, and upped the amount she was getting.
By 3:15 she was dozing in and out of sleep. Still complaining of pain in her gut, but that slowly trailed off and she was sleeping soundly by 5:30.
I left her sleeping at 7pm.
Sunday, October 23, 2011
I know you talked to Tim already but we are back. I wanted to stay until she got another dose of he pain meds in her. Overall, she was pretty alert- and I thought seemed to be pretty clear- talked about my job, asked me about Kelly's boyfriend, wedding dates etc- all stuff I wouldn't have expected her to think about- and she actually did talk a fair amount- I was surprised. I told her not to feel she had to talk and sometimes she did and sometime she closed her eyes but wasn't asleep- she is obviously weak. But she did say she was happy to see me there every time she opened her eyes- so I hope it helped her in some way. She asked me to get the nurse for her meds twice, cover her up, etc - but the nurse told me she was more alert this weekend. I had nothing to compare to so I am not a good judge. She got pain meds about 3:30 and a few minutes before 4 she was sound asleep - i whispered I was leaving and she didn't even stir. Considering she was alert most of afternoon (we got there about 12:30) she may have been tired. I felt OK leaving her at that point. A doctor was also in while I was there- she said they were happy that Linda was less confused and they were trying to balance pain med dosage and wanting to maybe keep her more alert- she was asking Linda how the meds were working. I could tell toward the end of the two hour period between both times- Linda did start to say she was in pain- and they gave her meds at that point. I made sure the call button was right at her hand before I left so she could get them. And it is nice she is right by the desk- they heard her call them! She did complain about her mouth being dry -it must be yucky she cant drink anything. I got the nurse who had her rinse her mouth with stuff, then with some ice water, then put some stuff on her lips because they were pretty dry. She also got an injection for diarrhea and another for insulin when I was there. Poor thing- she is a trooper through all this. I had absolutely no idea it was as bad as it must have been- since I suspect she was even much worse. I hope I got all this straight for you. Thanks for the updates too.
She received an infusion of platelets to reduce GI bleeding. This resulted in an expected reaction (hives, swelling, etc) which was counteracted with Benadryl and was followed by general drowsiness / grogginess.
- Linda's GVHD is very severe. Paula says Loren said it is a 'C,' or next to worst.
- Her skin and mouth look good, but her GI tract and liver are still on hold.
- They are still in the process of balancing her meds for best effect on GI and liver. Probably be a week before we see any improvement there.
- T cells will be tested soon. Loren says would not be surprised if they are at 100%
- The time until Linda can go back to work is estimated at 4 to 14 weeks. Loren would be surprised if she is there by Thanksgiving, and she might need PT after that period.
- Her liver should be OK eventually, but they will test for ongoing problems.
- Linda is confused some of the time, which is due to the painkiller, the liver treatment, and the steroid treatment. They will be lowering the dosage as soon as they can.
- Depression is normal in these cases, since it seems like pain and discomfort with no end. People holding her attention seems to help.
- Loren is worried about infection. Any visitor should not be actively sick, and should wash hands and use the sanitizer on the wall by the door.
Paula and Marcia revise and annotate as needed.