January 31, 2009: The results of the CT showed upper respiratory inflammation which is common for RSV. The doctor was checking for pneumonia but thankfully the bottom portion of her lungs are clear. They did however find calcium between the vertebrae It seems that every time one test rules out one thing they discover another. I am sure that all of us would discover many things wrong with us if we had all the tests that Jill had.
Her white count went up and she is coughing a little less. The doctor said she will be contagious for one month after the coughing stops. He stresses that this disease is common and most of us have it and don't know it. It is diagnosed as a really bad cold. Since it affects the upper respiratory bronchi, it also magnifies asthma. Jill's asthma has been horrible and was not helped by the inhaler she takes daily. She had been using it every couple of hours, when it is supposed to be used only four times a day. That is why they put her on breathing treatments.
I know this scared Jill especially when her blood pressure dropped. She kept asking "WHAT DOES THAT MEAN"? The outcome could have been worse so I guess we have to consider that a blessing
This is one more hurdle that Jill has to get through. We will have to stay in the Chicago area 8 days after she is released.
I have to admire the strength that she has. Staying in the hospital for over three weeks takes a lot out of a person. It is something a lot of us will never have to go through. The Chemo is so hard and to top it off she had to get this. Her spirits are still high even though I can see this virus has worn her out.
It is so funny, the doctors come in covered from head to toe. Ernie and I have to keep masks on in and outside of the room. We wash our hands constantly and have to wear gowns to cover our clothes so no droplets get on them.
I couldn't sleep with the stupid mask on. I had to keep using my inhaler too. I took it off when I was sleeping. Tonight I am going to wait until Jill gets her sleeping pill and then I am going to the apartment to sleep. It's just too hard to keep that thing on when you sleep, besides she said all I do is talk in my sleep.
I keep waking up in a cold sweat too. I think Ernie wants to have the test for RSV when he gets home. He is the one that was sick before we left. He was coughing like a beast.
How is BELLA, we miss her
Love,
Doreen
Saturday, January 31, 2009
Friday, January 30, 2009
DAY 8 - FRIDAY
January 30, 2009: After a sleepless night again and endless coughing, another test was taken to identify a suspected viral infection. At about 2 this afternoon the two infectious disease doctors came in the room with gowns, masks, and gloves on. This time the masks were different than the ones they usually wear.
It was not a good sign. The virus was identified as RSV, it is an upper respiratory virus that can develop into pneumonia. It is dangerous for small children, the elderly, and immune suppressed adults. In some cases it can cause death in these groups. There is no treatment for this virus. It just has to run it's course which takes up to three weeks. Jill is scheduled for a cat scan to see if there is any sign of pneumonia. Jill's white count is up to 0.4 today which means that the stem cells are definitely growing.
Ernie and I have to wear the gown, mask, and gloves too. The virus can be spread by droplets from the cough that gets on your clothes. RSV can live for a couple of days on contact surfaces and clothing. They do not want this to spread to anyone on this floor. Extreme caution is taken at this time.
The outlook for Jill is that she will recover as her immune system rebuilds itself. It will probably delay coming home as scheduled. I don't think she can go back to the apartment with this cough even if her counts go up. The breathing treatments are helping. All of us (Ernie, Jill, and myself ) cannot come into contact with our little grandchildren for three weeks. (We can't wait to see them) I guess Mark will just have to let us see them on the Web Cam. We saw Isabelle last night. It felt so good to see her. We were all smiling
I will keep you informed about the results from the cat scan as soon we find out
Love
Doreen
It was not a good sign. The virus was identified as RSV, it is an upper respiratory virus that can develop into pneumonia. It is dangerous for small children, the elderly, and immune suppressed adults. In some cases it can cause death in these groups. There is no treatment for this virus. It just has to run it's course which takes up to three weeks. Jill is scheduled for a cat scan to see if there is any sign of pneumonia. Jill's white count is up to 0.4 today which means that the stem cells are definitely growing.
Ernie and I have to wear the gown, mask, and gloves too. The virus can be spread by droplets from the cough that gets on your clothes. RSV can live for a couple of days on contact surfaces and clothing. They do not want this to spread to anyone on this floor. Extreme caution is taken at this time.
The outlook for Jill is that she will recover as her immune system rebuilds itself. It will probably delay coming home as scheduled. I don't think she can go back to the apartment with this cough even if her counts go up. The breathing treatments are helping. All of us (Ernie, Jill, and myself ) cannot come into contact with our little grandchildren for three weeks. (We can't wait to see them) I guess Mark will just have to let us see them on the Web Cam. We saw Isabelle last night. It felt so good to see her. We were all smiling
I will keep you informed about the results from the cat scan as soon we find out
Love
Doreen
Thursday, January 29, 2009
DAY 7: THURSDAY
January 29, 2009: Jill coughed all night. She had three breathing treatments during the day that seemed to help, but only for a little while. This afternoon, two infectious disease doctors came in to examine her and new blood tests were ordered. They are trying to make sure that she has not contracted a viral infection. It may just be her asthma out of control, or her MS. In spite of coughing all night, she did have more energy than yesterday. Her counts have basically not changed, but it is normal for them to stay low until the new stem cells engraft. I hope she has a better night's sleep tonight. Her cough reminds me of when she was little and had bronchial asthma and coughed all night. It also sounds just like Adele's did too.
She was able to video chat with Mark, Nina, & Isabelle tonight. That made her very happy.
Love to all,
Doreen
She was able to video chat with Mark, Nina, & Isabelle tonight. That made her very happy.
Love to all,
Doreen
Wednesday, January 28, 2009
DAY 6: WEDNESDAY
January 28, 2009: Jill finally had a good night's sleep. She took a sleeping pill that helped. Her WBC was only 0.1 yesterday, but it is back to 0.3 today. Yesterday's counts were the lowest so far. That explains the exhaustion.
She felt better in the morning, but as the day progressed, she was tired again and slept most of the afternoon. The Neupogen shots are causing some pain in her lower back. It could get a lot worse, but we are thinking positive. Her white count went up three points from yesterday. That is a very positive sign because they did it on their own.
She doesn't eat much but she likes her raspberry sherbet! She drinks most of the time instead. The fluids fill her up so fast, she just can't eat. The nurse is making her shakes from orange sherbet, vanilla pudding, and milk. She loves them and it doesn't require any effort for her to drink.
Love,
Doreen
She felt better in the morning, but as the day progressed, she was tired again and slept most of the afternoon. The Neupogen shots are causing some pain in her lower back. It could get a lot worse, but we are thinking positive. Her white count went up three points from yesterday. That is a very positive sign because they did it on their own.
She doesn't eat much but she likes her raspberry sherbet! She drinks most of the time instead. The fluids fill her up so fast, she just can't eat. The nurse is making her shakes from orange sherbet, vanilla pudding, and milk. She loves them and it doesn't require any effort for her to drink.
Love,
Doreen
Tuesday, January 27, 2009
DAY 5: TUESDAY
January 27, 2009: Jill coughed all night and also ran a temperature. She seems to have a head cold because her ears hurt and she has some congestion in her throat. Last night she felt great and walked around the hallways again. She even went on a stationary bike in the visitor's lounge. We don't know what triggered it, but the doctor said that things could be like a roller coaster ride for a while. When her counts come up, she will be more stable.
Tonight she gets a neupogen shot in the tummy, like before, to stimulate the stem cells to grow. There can be side effects like pain in the bones and you can feel like you have been run over by a truck, but that means that the neupogen is working. If this happens, she will be given meds for the pain.
Today her energy level was very low, but she was up most of the night, so that can be one of the reasons. She feels better now and has had another breathing treatment to help with the cough. Her rash is still visible but is fading.
Jill sends her love
Love,
Doreen
Tonight she gets a neupogen shot in the tummy, like before, to stimulate the stem cells to grow. There can be side effects like pain in the bones and you can feel like you have been run over by a truck, but that means that the neupogen is working. If this happens, she will be given meds for the pain.
Today her energy level was very low, but she was up most of the night, so that can be one of the reasons. She feels better now and has had another breathing treatment to help with the cough. Her rash is still visible but is fading.
Jill sends her love
Love,
Doreen
DAY 4: MONDAY
January 26, 2009: Jill started feeling much better in the early morning about 4 am. I noticed that she was walking to the bathroom by herself and didn't call for assistance; this continued all day. She didn't even take a nap today and her appetite came back; she is eating!
Her platelet count fell again so she has to be very careful brushing her teeth. Her gums will bleed easily and can possibly swell. Platelets are the little stoppers that prevent us from bleeding from our orifices.
This afternoon, she walked around the hallway three times. This is a wonderful sign. She is also steadier and stronger. The nurses commented on how much better she looks.
The rash that she developed on her chest and back has faded, but you can still see the distinct butterfly shape. It is puzzling for the nurses and doctors because they have never seen it before. It looks as if someone took an iron and branded this perfect shape on her chest. It is in at least three different places. I looked on the computer and couldn't find a picture to show you so that you could get an idea of what it looks like. It is raised all around the edges and very red. The inside is clear. It looks like she was branded like the way they do cattle. We are watching it closely and trying to see if anything triggers another flare up. The chemotherapy does a lot of strange things to your body.
Love,
Doreen
Her platelet count fell again so she has to be very careful brushing her teeth. Her gums will bleed easily and can possibly swell. Platelets are the little stoppers that prevent us from bleeding from our orifices.
This afternoon, she walked around the hallway three times. This is a wonderful sign. She is also steadier and stronger. The nurses commented on how much better she looks.
The rash that she developed on her chest and back has faded, but you can still see the distinct butterfly shape. It is puzzling for the nurses and doctors because they have never seen it before. It looks as if someone took an iron and branded this perfect shape on her chest. It is in at least three different places. I looked on the computer and couldn't find a picture to show you so that you could get an idea of what it looks like. It is raised all around the edges and very red. The inside is clear. It looks like she was branded like the way they do cattle. We are watching it closely and trying to see if anything triggers another flare up. The chemotherapy does a lot of strange things to your body.
Love,
Doreen
Sunday, January 25, 2009
DAY 3
January 25, 2009: Jill is still feeling the effects from the chemotherapy. She is running a temperature, and she broke out with a rash all over her upper body. It looks like a butterfly rash because of the shape, but it is also on top of her head like eczema. It is very itchy so she is back on prednisone for the inflammation. It was given in the IV line so it would take effect immediately. She is extremely uncomfortable and very tired.
Jill keeps trying to sleep but she is checked around the clock which makes it almost impossible. Her counts continue to fall. Today is only day three although it seems much longer. On day five, which is Tuesday, things should start to turn around.
The girl in the room next to Jill that also had the transplant the same day for scleroderma feels a lot better. Her mother said if you touch her skin you can actually squeeze it a little and see little folds. It was like leather only three days ago. The symptoms for that disease are externally visible, so you can see results right away. MS affects the myelin sheath in the brain, so it takes much longer.
She thanks everyone for their prayers and hopes she will be up to writing soon.
Love
Doreen
Jill keeps trying to sleep but she is checked around the clock which makes it almost impossible. Her counts continue to fall. Today is only day three although it seems much longer. On day five, which is Tuesday, things should start to turn around.
The girl in the room next to Jill that also had the transplant the same day for scleroderma feels a lot better. Her mother said if you touch her skin you can actually squeeze it a little and see little folds. It was like leather only three days ago. The symptoms for that disease are externally visible, so you can see results right away. MS affects the myelin sheath in the brain, so it takes much longer.
She thanks everyone for their prayers and hopes she will be up to writing soon.
Love
Doreen
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