Robin is back at South Seminole. My favorite nurse was taking care of her today. But they've all been good so far. I talked to her surgeon. He was talking again about wanting to feed her through her stomach tube - we'll see. She's also on about the lowest respirator setting, so they said she may come off of that soon. She's heavily sedated, which is probably good right now because she is having stomach pain when she's awake. She's gained about 40lbs of liquid weight. Her right arm was more swollen than her left.
Apparently, any one of 3 doctors can order platelets for her. Dr. Alonso is the Attending Physician so I would use him. You have to make an appointment to give platelets and it takes 1.5 - 2 hours from what I've heard.
Monday, April 30, 2007
Sunday, April 29, 2007
Sunday April 29 2007
Post op Day 8
Just as we are getting settled in to ORMC they tell me that they might transfer her back to South Seminole. We pleaded with the nurse to tell the powers that be to leave her at ORMC where she wants to be. Finally it was up to the attending physician at ORMC who isn't there on a Sunday. But his backup was ok with it. So she'll be staying as far as we know.
She was under sedation today so no communication. They talked about taking her off the respirator. The did take her off the BP med. SHe might have started to run a temperature which would nmean a n infection and would be bad.
The blood donation thing is all messed up so don't worry about that for now.
As I'm writing this the nurse called me to tell me they are moving her back to South Seminole when a bed opens up. Call before you go to visit:
ORMC CCU (321) 841-5200
South Seminole ICU (321) 842-5260
Just as we are getting settled in to ORMC they tell me that they might transfer her back to South Seminole. We pleaded with the nurse to tell the powers that be to leave her at ORMC where she wants to be. Finally it was up to the attending physician at ORMC who isn't there on a Sunday. But his backup was ok with it. So she'll be staying as far as we know.
She was under sedation today so no communication. They talked about taking her off the respirator. The did take her off the BP med. SHe might have started to run a temperature which would nmean a n infection and would be bad.
The blood donation thing is all messed up so don't worry about that for now.
As I'm writing this the nurse called me to tell me they are moving her back to South Seminole when a bed opens up. Call before you go to visit:
ORMC CCU (321) 841-5200
South Seminole ICU (321) 842-5260
Late late sAT NIGHT UPDATE
due to a powe failure at south seminole robin has been moved to CCU #9 at ORMC. iT HAppens to be where she wanted to be so that all her regular dr.s can see her.
Saturday, April 28, 2007
Saturday, April 28, 2007
Post op day 7
They let up on her sedation and she was very awake tonight. Writing lots of notes on the tablet that Ethel and Jackie D. got for her. Very good idea. She asked about the kids. And her medications. She seems to be breathing good to me, but they don't have any immediate plans to take her off the respirator. They wanted to feed her through the stomach tube today but still no bowel sounds. Maybe tomorrow. You can donate blood/platelets for her at any Florida blood Center. It's called a directed donation and they said you'll need her SS# (?) so you'll have to call me for that information. She's at South Seminole Hospital. Different offices are open at different hours. Only a couple are open tomorrow. (Oviedo and downtown).
http://www.floridasbloodcenters.org/Content/fbcDonorCenters.htm
Florida's Blood Centers—Downtown Orlando
345 W. Michigan St., Suite 106 • Orlando, FL 32806
(407) 835-5500 l Fax (407) 835-5505
Hours: Mon 9:00 AM - 5:00 PM | Tue 11:00 AM - 7:00 PM | Wed 6:30 AM - 8:00 PM | Thu 9:00 AM - 5:00 PM | Fri 6:30 AM - 5:00 PM | Sun 8:00 AM - 4:00 PM
They let up on her sedation and she was very awake tonight. Writing lots of notes on the tablet that Ethel and Jackie D. got for her. Very good idea. She asked about the kids. And her medications. She seems to be breathing good to me, but they don't have any immediate plans to take her off the respirator. They wanted to feed her through the stomach tube today but still no bowel sounds. Maybe tomorrow. You can donate blood/platelets for her at any Florida blood Center. It's called a directed donation and they said you'll need her SS# (?) so you'll have to call me for that information. She's at South Seminole Hospital. Different offices are open at different hours. Only a couple are open tomorrow. (Oviedo and downtown).
http://www.floridasbloodcenters.org/Content/fbcDonorCenters.htm
Florida's Blood Centers—Oviedo
1954 W. St. Rd. 426 • Suite 1100 • Oviedo, FL 32765
(407) 588-1291 l FAX (407) 365-9982
Hours: Wed, Fri 9:00 AM - 5:00 PM | Thu 11:00 AM - 7:00 PM |
1954 W. St. Rd. 426 • Suite 1100 • Oviedo, FL 32765
(407) 588-1291 l FAX (407) 365-9982
Hours: Wed, Fri 9:00 AM - 5:00 PM | Thu 11:00 AM - 7:00 PM |
Sat, Sun 8:00 AM - 4:00 PM
Florida's Blood Centers—Downtown Orlando
345 W. Michigan St., Suite 106 • Orlando, FL 32806
(407) 835-5500 l Fax (407) 835-5505
Hours: Mon 9:00 AM - 5:00 PM | Tue 11:00 AM - 7:00 PM | Wed 6:30 AM - 8:00 PM | Thu 9:00 AM - 5:00 PM | Fri 6:30 AM - 5:00 PM | Sun 8:00 AM - 4:00 PM
Friday, April 27, 2007
Friday, April 27, 2007
Post op day 6
Better today. More awake and aware. Asking for water every chance she gets. So if you see her and she looks like she's trying to tell you something it is probably that she wants water. She also is hungry. They have a tablet that she can point at to tell us what she wants. What she really wants is the damn tube out of her mouth. Platelets were higher this morning (36). They gave her more - we will see what it is tomorrow. They also gave her some hemoglobin (blood). No big deal. They've almost had her completely off the BP med. I hate to see her like this but hopefully she is getting better.
Better today. More awake and aware. Asking for water every chance she gets. So if you see her and she looks like she's trying to tell you something it is probably that she wants water. She also is hungry. They have a tablet that she can point at to tell us what she wants. What she really wants is the damn tube out of her mouth. Platelets were higher this morning (36). They gave her more - we will see what it is tomorrow. They also gave her some hemoglobin (blood). No big deal. They've almost had her completely off the BP med. I hate to see her like this but hopefully she is getting better.
Thursday, April 26, 2007
Thursday, April 26, 2007
Post Op - Day 5
They gave her platelets again today. Her # is still low (in the teens - 130 is normal). Most likely the infection in her abdomen caused by the perforated ulcer is using up the platelets. She can't make them fast enough to keep up. Her bowels are still not active - it's one more thing that should start to recover after a surgery.
They are trying to get her to breath on her own so they've lowered the amount of breaths forced by the respirator to 6 from 12 breaths/minute. She makes up the other breaths on her own. They've also lowered her pain med causing her to be easier to wake. It also should help with her blood pressure so that they can take her off that med.
Biggest news is that I talked to her oncologist, Dr. Shah who has been treating her since she was diagnosed. She said she is checking Robin's blood results every morning and that we have to take it day to day. But she also suggested we need to think about the worst case scenario. She has talked to the oncologist at S. Seminole. I talked to him also. He had nothing to add other than they are doing everything they can for her.
They gave her platelets again today. Her # is still low (in the teens - 130 is normal). Most likely the infection in her abdomen caused by the perforated ulcer is using up the platelets. She can't make them fast enough to keep up. Her bowels are still not active - it's one more thing that should start to recover after a surgery.
They are trying to get her to breath on her own so they've lowered the amount of breaths forced by the respirator to 6 from 12 breaths/minute. She makes up the other breaths on her own. They've also lowered her pain med causing her to be easier to wake. It also should help with her blood pressure so that they can take her off that med.
Biggest news is that I talked to her oncologist, Dr. Shah who has been treating her since she was diagnosed. She said she is checking Robin's blood results every morning and that we have to take it day to day. But she also suggested we need to think about the worst case scenario. She has talked to the oncologist at S. Seminole. I talked to him also. He had nothing to add other than they are doing everything they can for her.
Wednesday, April 25, 2007
Wednesday, April 25 2007
Unfortunately her platelet count went down over night. So they gave her platelets again during the day. I didn't ask tonight what her count was. The important thing will be if she maintains the count over night. I got a call from her oncologist's nurse today. She told me the Dr. will call me tomorrow. Not much else to report. She hasn't made any new improvements. It's really up to Robin now - whether or not she wants to fight.
Tuesday, April 24, 2007
Late update
Just returned from the hospital. Robin's platelets were up to 94. This is very good for her and if she can maintain that level it will be a good sign.
Tuesday, April 24 2007
Post op, Day 3
Bad news first. Her platelet count is still very low (12) and that makes the attending physician very pessimistic about her chances. He blames the count on the trauma and not chemo treatments. Despite the low platelet count she has clotted okay and doesn't have any internal bleeding. They continue to give her platelets through the IV.
She has gained 12 lbs of fluid as of yesterday (she gained 70 last time). She is still urinating - her kidneys are working. They pump all that fluid into her and it has only one way out. Otherwise, it gets absorbed by her tissue. Her temperature was low in the morning but seemed to get better by the afternoon. Still on BP meds. There is a bit of fluid in her lungs but they suction that out. When I hold her hand and talk to her she moves and opens her eyes so she is aware - of course she will not remember any of it. I think it's good for her to hear familiar voices. The nurses are more positive sounding about her condition.
Much love and thanks to anyone that comes and sits with her. It takes much weight off of my shoulders. I just don't have the strength I had last time. Let's hope and pray Robin does.
Bad news first. Her platelet count is still very low (12) and that makes the attending physician very pessimistic about her chances. He blames the count on the trauma and not chemo treatments. Despite the low platelet count she has clotted okay and doesn't have any internal bleeding. They continue to give her platelets through the IV.
She has gained 12 lbs of fluid as of yesterday (she gained 70 last time). She is still urinating - her kidneys are working. They pump all that fluid into her and it has only one way out. Otherwise, it gets absorbed by her tissue. Her temperature was low in the morning but seemed to get better by the afternoon. Still on BP meds. There is a bit of fluid in her lungs but they suction that out. When I hold her hand and talk to her she moves and opens her eyes so she is aware - of course she will not remember any of it. I think it's good for her to hear familiar voices. The nurses are more positive sounding about her condition.
Much love and thanks to anyone that comes and sits with her. It takes much weight off of my shoulders. I just don't have the strength I had last time. Let's hope and pray Robin does.
Monday, April 23, 2007
Monday, April 23 2007
Post Op Day 2.
Emergency surgery Saturday night for a ruptured stomach ulcer. She is in ICU at South Seminole. As we learned from her last major surgery recovery in ICU cam sometimes go backward before it goes forward. She is on a respirator and is completely sedated. She gets nutrients, pain medicine, antibiotic, platelets and something that controls her blood pressure via the IV. They occasionally lighten the sedative to check her responsiveness. Her body temperature is good. Her blood is coagulating properly. She has passed the first hurdle to recovery by urinating on her own (via a catheter). It means her kidneys our working and provides a means for eliminating all the fluids that are pumped in to her. Last time she blew up like a balloon and it was painful. Her color is good and she generally looks okay considering. In addition to the respirator in her mouth she has a stomach drain through her nose. She has another stomach drain through a hole in her stomach. Eventually she can be fed through that. They will one by one wean her off of each thing. I'm not sure what order. Maybe
- BP medicine
- respirator
- stomach drain in her nose.
I don't think they will wake her until they get the tubes out of her mouth and nose.
They're are many complications yet to worry about but we'll take them one at a time. I will try to update this everyday.
Emergency surgery Saturday night for a ruptured stomach ulcer. She is in ICU at South Seminole. As we learned from her last major surgery recovery in ICU cam sometimes go backward before it goes forward. She is on a respirator and is completely sedated. She gets nutrients, pain medicine, antibiotic, platelets and something that controls her blood pressure via the IV. They occasionally lighten the sedative to check her responsiveness. Her body temperature is good. Her blood is coagulating properly. She has passed the first hurdle to recovery by urinating on her own (via a catheter). It means her kidneys our working and provides a means for eliminating all the fluids that are pumped in to her. Last time she blew up like a balloon and it was painful. Her color is good and she generally looks okay considering. In addition to the respirator in her mouth she has a stomach drain through her nose. She has another stomach drain through a hole in her stomach. Eventually she can be fed through that. They will one by one wean her off of each thing. I'm not sure what order. Maybe
- BP medicine
- respirator
- stomach drain in her nose.
I don't think they will wake her until they get the tubes out of her mouth and nose.
They're are many complications yet to worry about but we'll take them one at a time. I will try to update this everyday.
Wednesday, April 11, 2007
Wed, April 11 - Go Go on Topotecan and Avastin
Good day. Good News. Plateletes and Hemoglobin are up so I was able to get the Topotecan. Protein count was a 1+ so I was able to get Avastin, which I should have had last week but cannot cry over spilled milk.
the GREAT news is that my bilirubin level is within normal range. That means that it is functioning well. Shah still wants to keep the stint to avoid having to go through this process again, but she is going to check with Radiation to see if there is someway to clamp off the external stent even if only temporary moments.
It was a long visit today, but she will be getting back to me with more treatment dates. She said nothing about scans. I guess she feels that all the signs are looking good and this is still the best course of continued treatment. I've only had 7 or 15 scheduled Topotecans.
Thanking you all for your continued support, thoughts and prayers. I always feels these carry each day.
the GREAT news is that my bilirubin level is within normal range. That means that it is functioning well. Shah still wants to keep the stint to avoid having to go through this process again, but she is going to check with Radiation to see if there is someway to clamp off the external stent even if only temporary moments.
It was a long visit today, but she will be getting back to me with more treatment dates. She said nothing about scans. I guess she feels that all the signs are looking good and this is still the best course of continued treatment. I've only had 7 or 15 scheduled Topotecans.
Thanking you all for your continued support, thoughts and prayers. I always feels these carry each day.
Wednesday, April 4, 2007
Wed, April 4 - Chemo Day Update - NOGO
Last Friday I had a platelet transfusion because they were so low on Wednesday (26). Today they were 64. Still too low for Topotecan. The protein in the urine was 1+ which is out of the normal range; however, Dr. Shah had been giving Avastin at that value. Unfortunately whe was not in the office today and the on call dr would not write the orders. Naturally, I am very upset about this but nothing I can do. So, I got nothing except the nausea medicine and changing of the needle. I also had to go in this week to have my tubing of the bilirium tube check because it had not been draining in several days. It turns out this is not only ok but maybe a good thing in that the liver is starting to process on its own and may be removed soon.
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