I have been here since 11am this morning. At first she was very anxious. The doctors changed her medicine from "Delores" to morphine. They said that would make her more coherent. Well apparently its not as strong. The nurse said that she got 0.5 ML compared to the 2ML she usually gets. After speaking with the doctor her morphine was raised and she got some more. Her pain was gone, but she was increasing anxious.
Finally the nurse gave her Avitan. Much less than the last time. It did the trick.
She fell asleep at 6pm and is still out. Almost 4 hrs now.
I asked the nurse about all this anxiety. She explained that even without a serious illness being in the hospital for such a long time tends to make people disoriented.Faces of nurses and doctors keep changing as does medicines and routines.Its like sensory deprivation. That brings on a strong feeling of losing control and becoming nervous and scared.She's been drinking for me, but no food. She told me she was hungry a few times, but when I try to give her something she says she can't. The nurse thinks that's the medicine. As long as she feels hungry food will come. She did have 2 spoons of pudding to take her medicine. She also let me and the nurse know that she was on to us and very aware that chopped up pills were in there. In her words "You can't pull one over on me". Jeff has been a great comfort for her today. She settles down much faster for him than for me today. As long as she trusts someone ANYONE we're good. Today its Jeff. She lies down for him and drinks for him, and tells him she's hungry so maybe at some point she'll eat for him. We'll see what the overnight brings. I am so proud of Danielle doing this everynight. I was so stressed out when I got here at first. She has been great in this situation.
Saturday, July 28, 2007
Friday, July 27, 2007
Friday Night
I got to the hospital at about 10 this morning. Mom had eaten 5 tator tots (the hospitals version of home fries). I was very happy and relieved. Maybe just maybe she will begin to have an appetite.
It felt good to go back to mom's apartment last night and sleep uninterrupted in a bed. Erinn called at 7AM to make sure I was getting up. It was her first all- niter with mom so she was exhausted. Especially since mom got up so often to go to the bathroom. She went home and worked for awhile and then passed out on her couch for three hours. When I spoke to her was still exhausted. I can't possible imagine how she feels LOL. Tomorrow is Jamie's turn.
The doctors feel bad that we feel the need to have one of us at her side all night long, although they do understand. They mentioned a bed alarm. It works by connecting the patient's hospital gown to a string. If the patient gets up it sets off an alarm for the nurse. The question is does that really secure an immediate response? What if the nurse is in with someone? If it happens 5 times over the course of a night will the nurse lose her patience with mom? The other concern is mom. Many times it is only my sisters or I who can reason with her when she is confused or persistent.
The doctors also mentioned the possibility of mom needed to go to rehab before she can come home. The physical therapist will make that evaluation. She comes in every day around 11 much mom's displeasure. Many times she is in bed sleeping and we have to keep waking her up. About half way through she tells the therapist she's had enough. Most of the time I am able to convince her to finish........but you know that stubbornness she has! Mom's feet and ankles are very swollen. Partly from the fluids she is receiving and partly from being inmobile for so long.
She had a rough period of time earlier tonight. Her head was spinning and she was nauseous. She was also feeling a lot of pressure in her chest. We had close to an hour of her sitting in bed and then immediatley insisting she needed to sit up and dangle her feet. No matter how she sat she was crying out for God to help her. I kept trying to make her realize that the up and down was only making her breathing and dizziness worse but she was so uncomfortable she really didn't know what to do with herself. She was making herself panic in the process. She finally settled down and fell asleep. She stayed asleep as long as I sat and held her hand. When I moved to a seat by the end of her bed she sat up reaching for my hand and said I was too far away. She is in a deep enough sleep right now that I was able to get up.
Well, seems I spoke too soon. She woke up to go to the bathroom and confirmed my reasoning for sleeping in this hospital room every night. The need to urinate woke her up and she paniked. She started hitting the bedrail and yelling "I go to go right now, help!" If one of us isn't here she wouldn't find her call bell nor would she be able to wait long enough for a response. I'm afraid she'll try getting up on her own and fall. We have enough problems on our hands without that. When she was getting back into bed her head started spinning again which caused her to panic again. She compalined of a headache and the pain in her abdomen starting so the nurse brought her pain med. Her blood pressure was high too (158/107) The highest its been in awhile. Someone her nurse Traci and I convinced her to try to swallow her evening bloo presesure pill. Thank Gog for small successes.
I'm hoping she is going to sleep for the next two hours at least since she got her medicine so I shoudl probably stry to sleep as well. Thank you for all of your prayers and concerned calls. We love you for trying to help us through this nightmare.
It felt good to go back to mom's apartment last night and sleep uninterrupted in a bed. Erinn called at 7AM to make sure I was getting up. It was her first all- niter with mom so she was exhausted. Especially since mom got up so often to go to the bathroom. She went home and worked for awhile and then passed out on her couch for three hours. When I spoke to her was still exhausted. I can't possible imagine how she feels LOL. Tomorrow is Jamie's turn.
The doctors feel bad that we feel the need to have one of us at her side all night long, although they do understand. They mentioned a bed alarm. It works by connecting the patient's hospital gown to a string. If the patient gets up it sets off an alarm for the nurse. The question is does that really secure an immediate response? What if the nurse is in with someone? If it happens 5 times over the course of a night will the nurse lose her patience with mom? The other concern is mom. Many times it is only my sisters or I who can reason with her when she is confused or persistent.
The doctors also mentioned the possibility of mom needed to go to rehab before she can come home. The physical therapist will make that evaluation. She comes in every day around 11 much mom's displeasure. Many times she is in bed sleeping and we have to keep waking her up. About half way through she tells the therapist she's had enough. Most of the time I am able to convince her to finish........but you know that stubbornness she has! Mom's feet and ankles are very swollen. Partly from the fluids she is receiving and partly from being inmobile for so long.
She had a rough period of time earlier tonight. Her head was spinning and she was nauseous. She was also feeling a lot of pressure in her chest. We had close to an hour of her sitting in bed and then immediatley insisting she needed to sit up and dangle her feet. No matter how she sat she was crying out for God to help her. I kept trying to make her realize that the up and down was only making her breathing and dizziness worse but she was so uncomfortable she really didn't know what to do with herself. She was making herself panic in the process. She finally settled down and fell asleep. She stayed asleep as long as I sat and held her hand. When I moved to a seat by the end of her bed she sat up reaching for my hand and said I was too far away. She is in a deep enough sleep right now that I was able to get up.
Well, seems I spoke too soon. She woke up to go to the bathroom and confirmed my reasoning for sleeping in this hospital room every night. The need to urinate woke her up and she paniked. She started hitting the bedrail and yelling "I go to go right now, help!" If one of us isn't here she wouldn't find her call bell nor would she be able to wait long enough for a response. I'm afraid she'll try getting up on her own and fall. We have enough problems on our hands without that. When she was getting back into bed her head started spinning again which caused her to panic again. She compalined of a headache and the pain in her abdomen starting so the nurse brought her pain med. Her blood pressure was high too (158/107) The highest its been in awhile. Someone her nurse Traci and I convinced her to try to swallow her evening bloo presesure pill. Thank Gog for small successes.
I'm hoping she is going to sleep for the next two hours at least since she got her medicine so I shoudl probably stry to sleep as well. Thank you for all of your prayers and concerned calls. We love you for trying to help us through this nightmare.
Friday morning
I arrived at the hospital at around 6ish last night. Mom had just finished eating three tiny pieces of fruit. Any eating is good at this point.
Dee stayed with me for a while, and we both got to speak with Dr. Wasserman (Mom's fave). After Mom finished flirting, he watched her do the breathing stimulator and talked with us a little. He reported that the last chest x-ray is still the same as the prior. No more signs of pneumothorax and the haziness looks the same. I asked about her state of mind - confusion, delusions - when will we see an improvement? His feeling is that this is pretty normal. People having chemo react in different ways, plus she is getting a whole host of other things (compazine, dilaudid, etc) that can also make her feel confused and out of it. She should improve as drugs leave her system, although we know she needs to keep getting them, so I can only assume this will be the cycle for a bit. I think Dee and I felt a little better after that, and I called Jamie with the update. Dee went home to clear her head and get some rest.
The resident came in later and echoed Dr. W's feelings. She sees this confusion often, especially in older patients who don't always tolerate drugs as well. Plus, many people become confused just from too much time in the hospital.
Before Dee left, we ordered Mom some dinner. I thought chicken soup would be good again, because she can sip the broth, but surprisingly, she asked for Chicken Fingers!! Is her appetite coming back? We can only hope! She ate two tiny bites of Chicken dipped in Barbeque Sauce then one spoon of chicken broth before pronouncing that we was stuffed. It's going to take some time for her to feel like she can really eat again, but this is probably due to her liver still being swollen and putting pressure on her abdomen. That was the worst feeling when I had hepatitis A back in 1996.
Mom received pre-meds, then platelets with her BP remaining normal the entire time (amen) and then I finally drifted off to sleep at about 11. By 1:30 Mom had to get up to go to the bathroom, then again at 3 and 4:30. Unbelievably, she asked for something to drink (it's been like pulling teeth to convince her to keep her mouth moist) and she agreed to do the breathing stimulator all three times! It's been such a long time since the kids woke me so much, that I've really had a hard time getting back to sleep. A chest x-ray was just completed, so crossing our fingers for things to stay good.
I still can't believe she's been able to get up to use the commode through everything including the chest tube, but I guess that's her true personality coming through. I'm sure that using a badpan will be her very last resort. I think I can see an improvement in her strength tonight, which is a good thing, because I think I pulled a muscle in my back.
Dee stayed with me for a while, and we both got to speak with Dr. Wasserman (Mom's fave). After Mom finished flirting, he watched her do the breathing stimulator and talked with us a little. He reported that the last chest x-ray is still the same as the prior. No more signs of pneumothorax and the haziness looks the same. I asked about her state of mind - confusion, delusions - when will we see an improvement? His feeling is that this is pretty normal. People having chemo react in different ways, plus she is getting a whole host of other things (compazine, dilaudid, etc) that can also make her feel confused and out of it. She should improve as drugs leave her system, although we know she needs to keep getting them, so I can only assume this will be the cycle for a bit. I think Dee and I felt a little better after that, and I called Jamie with the update. Dee went home to clear her head and get some rest.
The resident came in later and echoed Dr. W's feelings. She sees this confusion often, especially in older patients who don't always tolerate drugs as well. Plus, many people become confused just from too much time in the hospital.
Before Dee left, we ordered Mom some dinner. I thought chicken soup would be good again, because she can sip the broth, but surprisingly, she asked for Chicken Fingers!! Is her appetite coming back? We can only hope! She ate two tiny bites of Chicken dipped in Barbeque Sauce then one spoon of chicken broth before pronouncing that we was stuffed. It's going to take some time for her to feel like she can really eat again, but this is probably due to her liver still being swollen and putting pressure on her abdomen. That was the worst feeling when I had hepatitis A back in 1996.
Mom received pre-meds, then platelets with her BP remaining normal the entire time (amen) and then I finally drifted off to sleep at about 11. By 1:30 Mom had to get up to go to the bathroom, then again at 3 and 4:30. Unbelievably, she asked for something to drink (it's been like pulling teeth to convince her to keep her mouth moist) and she agreed to do the breathing stimulator all three times! It's been such a long time since the kids woke me so much, that I've really had a hard time getting back to sleep. A chest x-ray was just completed, so crossing our fingers for things to stay good.
I still can't believe she's been able to get up to use the commode through everything including the chest tube, but I guess that's her true personality coming through. I'm sure that using a badpan will be her very last resort. I think I can see an improvement in her strength tonight, which is a good thing, because I think I pulled a muscle in my back.
Thursday, July 26, 2007
Thursday, 7/26
Another rough night for Dee and Mom. I left the hospital around 8:30 exhausted. I'm not even sure how Dee is still functioning at this point. Mom was still pretty out of it, but we tested her a little to see what she remembered and what she didn't. Family names were fine, but she forgot that she left Howard Beach almost 2 years ago. Dee and I asked the nurse about giving her a breathing treatment to loosen up some of the mucus we hear when she coughs. Unfortunately, some nurses are more on top of things than others, and the treatment did not happen.
At around 11pm, they decided Mom needs to get blood transfused. Dee could not get a straight answer on why or what her hemoglobin levels measured when last tested. They started to transfuse and Mom's blood pressure started to drop. Then dropped more and more. Dee called me at about midnight to tell me it went down to 55 over 33. The nurse was not very willing to get the doctor to her room and suggested that she needed more fluids. Dee insisted that she call the doctor immediately so that she could understand who ordered blood and why and what needs to be done next.
The stopped the transfusion and by 1 am, Mom's BP had returned to normal. Dee sent me back to bed with a "no news is good news" plan. I finally nodded off by 1:30 and called her again this morning at 7:40.
Today's chest xray still showed that hazing, but they don't think it's pneumonia. A CAT scan was ordered, but apparently cancelled. We don't know why or by whom, but I don't think Mom could deal with that now anyway. Another x-ray is planned for today. Mom has still had that junky sound in her chest when she coughs, but today's nurse set up the nebulizer as soon as Dee mentioned it. Thank heavens for small gifts.
Mom has been sitting up a lot and trying to get comfortable. The nurse thinks that the mucus feels thick to her and is making her uncomfortable. I'm hoping that the breathing treatments will help loosen it up as it was previously. The nurse is suggesting giving Mom Ativan. She thinks she's feeling anxious, but we don't really want her having that. Dee is not seeing any real signs of anxiety. Last time they gave her Ativan, she was sooooo loopy and hasn't eaten a real meal since.
The port was supposed to make things easier for Mom. If they hadn't screwed things up when putting in the port, I think we'd have a much simpler situation right now.
Thanks for listening.
At around 11pm, they decided Mom needs to get blood transfused. Dee could not get a straight answer on why or what her hemoglobin levels measured when last tested. They started to transfuse and Mom's blood pressure started to drop. Then dropped more and more. Dee called me at about midnight to tell me it went down to 55 over 33. The nurse was not very willing to get the doctor to her room and suggested that she needed more fluids. Dee insisted that she call the doctor immediately so that she could understand who ordered blood and why and what needs to be done next.
The stopped the transfusion and by 1 am, Mom's BP had returned to normal. Dee sent me back to bed with a "no news is good news" plan. I finally nodded off by 1:30 and called her again this morning at 7:40.
Today's chest xray still showed that hazing, but they don't think it's pneumonia. A CAT scan was ordered, but apparently cancelled. We don't know why or by whom, but I don't think Mom could deal with that now anyway. Another x-ray is planned for today. Mom has still had that junky sound in her chest when she coughs, but today's nurse set up the nebulizer as soon as Dee mentioned it. Thank heavens for small gifts.
Mom has been sitting up a lot and trying to get comfortable. The nurse thinks that the mucus feels thick to her and is making her uncomfortable. I'm hoping that the breathing treatments will help loosen it up as it was previously. The nurse is suggesting giving Mom Ativan. She thinks she's feeling anxious, but we don't really want her having that. Dee is not seeing any real signs of anxiety. Last time they gave her Ativan, she was sooooo loopy and hasn't eaten a real meal since.
The port was supposed to make things easier for Mom. If they hadn't screwed things up when putting in the port, I think we'd have a much simpler situation right now.
Thanks for listening.
Wednesday, July 25, 2007
Wednesday Night
Well those of you who know me well know that if I ddin't have bad luck I'd have no luck at all! I apparently get that from my mom b/c she has had one complication after another. The doctor has no idea what caused all of the bleeding this morning from the site of the chest tube. The most recent X-ray shows "hazing" in the chest wall, assumably blood. It also shows a small area of collapse at the top of the lung. They will continue to take x-rays and evaluate that situation. If it gets worse she'll need another chest tube. That is really the last thing she can handle right now so we need to pray extra hard for that not to happen! Her discomfort is being managed by Dolores.....but it seems to increase her confusion. She has been sleeping most of the day, although she is restless and unable to find a comfy position for long. She will be getting a unit of blood tonight to counteract what she lost earlier today and all of the blood that they keep taking. I am trying my hardest to be positive for her, but seeing her like this is so emotionally draining. Please continue to pray for her health and strength and the strength of my sisters and I.....we appreciate it so much.
Wednesday, 7/25 Morning
I started to worry about Mom last night. Her breathing got really labored and I asked for a dr. to be sent over. After listening a little, the pulomologist ordered a chest x-ray stat (yes, they actually say that in real life) to make sure her lung didn't go down at all. I didn't see that dr. the rest of the night, but the internist stopped in and was so nice. I explained everything that was going on and she took a good listen to mom's lungs. She could hear air going into both, but said it sounds like she was not fully inflating all the sacs. We need her to keep using the stimulator hourly to help her with that.
Dee arrived to relieve me at about 11:30 and stayed over again. By this morning, the full pulmonology team was in again and took another chest x-ray. They confirmed that the lung still looks good and the chest tube can come out today.
By about 10:30 Dee called me to say that Mom was having a lot of bleeding from the area of the chest tube (soaking through pants and bedsheets). Very scary for a little while there. Pulmonology team was back and determined that the most likely cause of the bleeding is the incision and not internal. Probably due to the blood thinners she is on. The tube was removed and lots of pressure applied. Bleeding is under control and she is tightly taped.
After a shot of Dilaudid (or Dolores as Mom calls it), she's feeling a little more comfortable. Our joke has been "That Dolores is one hard working b****. Mom keeps her going all the time." Laughter still helps.....
Dee arrived to relieve me at about 11:30 and stayed over again. By this morning, the full pulmonology team was in again and took another chest x-ray. They confirmed that the lung still looks good and the chest tube can come out today.
By about 10:30 Dee called me to say that Mom was having a lot of bleeding from the area of the chest tube (soaking through pants and bedsheets). Very scary for a little while there. Pulmonology team was back and determined that the most likely cause of the bleeding is the incision and not internal. Probably due to the blood thinners she is on. The tube was removed and lots of pressure applied. Bleeding is under control and she is tightly taped.
After a shot of Dilaudid (or Dolores as Mom calls it), she's feeling a little more comfortable. Our joke has been "That Dolores is one hard working b****. Mom keeps her going all the time." Laughter still helps.....
Tuesday, July 24, 2007
Tuesday, July 24th
Well, we had an up and down night. Connie slept on and off for about 2-3 at a time. She is being pumped with IV fluids so she needs to go to the bathroom often. Unfortunatly it is very difficult for her to get up to go and then even more difficult for her to get situated and comfortable back in bed. She has an extreme bloated feeling in her stomach preventing her from getting any food or drinks down. The bloating and discomfort comes from her liver. The good news is that the bloodwork shows that the liver is responding to the chemo, but in doing so it enlarges. If she isn't able to eat in the next day or so (it's been 5 days) she will need to get some IV nutrients. She also needs to work on breathing into a lung stimulator. It works by breathing in hard , to raise a disk inside the tube. I had one a few years ago when I broke my ribs. It works to keep the lungs inflating to prevent pneumonia since she is nonmobile. Let's pray that she is able to breath into the stimulator, eat and gain some energy so that she can come home soon.
Monday, July 23, 2007
Monday Night
It's now 9:15 on MOnday night. Mom's recent x-ray shows an improvement in her lung (it has gone back up to where it belongs). The chest tube needs to stay in for a few days until they are sure all of the air in her chest is gone. The surgeon said that a collapsed lung is something that happens after having a chest port put in about 1% of the time. Isn't my mom the lucky one to fall into that 1%!!!!She is still uncomfortable and just really out of it. Moving around, sitting up and using the bathroom are all tremendous acts. I'm spending the night here with her so she isn't alone. It's really hard to walk away and leave your loved one's in the hands of strangers........trained or not. I'm thankful for my laptop and the hospital wireless service. It will surely keep me company tonight.
Monday, July 23, 2007
Connie is not feeling great today. She has been utterly exhausted and has not had a desire to eat. I was able to convince her to have 6 spoons of chicken broth yesterday, following by 5 spoons of pudding 3 hours later. She was having a hard time catching her breath anytime she got up and laid back down and her breathing was getting pretty labored.
It got much worse by the time Dee arrived this morning. Doctors has already completed a chest x-ray and determined that her lung was damaged when the port-a-cath was put in. It was allowing air to escape from her lung into her chest cavity which then put enough pressure on her lung to cause a collapse.
Thankfully, they were able to quickly remedy the situation with an emergency procedure (guess you could call it an operation of sorts) right in her room. Dee says she is breathing better now and will need to stay at the hospital at least a few extra days so they can make sure all the excess air is out.
Since she has already completed two days of chemo, we are also nervous about the possibility of infection. Mom is already on antibiotics, so we are saying extra prayers that she has not been exposed to anything that would make this any worse than it already is. I have no idea if they can still do the chemo scheduled for tonight.
It got much worse by the time Dee arrived this morning. Doctors has already completed a chest x-ray and determined that her lung was damaged when the port-a-cath was put in. It was allowing air to escape from her lung into her chest cavity which then put enough pressure on her lung to cause a collapse.
Thankfully, they were able to quickly remedy the situation with an emergency procedure (guess you could call it an operation of sorts) right in her room. Dee says she is breathing better now and will need to stay at the hospital at least a few extra days so they can make sure all the excess air is out.
Since she has already completed two days of chemo, we are also nervous about the possibility of infection. Mom is already on antibiotics, so we are saying extra prayers that she has not been exposed to anything that would make this any worse than it already is. I have no idea if they can still do the chemo scheduled for tonight.
Why a Blog?
First, thank you all for your concern, prayers and positive thoughts. Mom has said that she can feel the love from everyone and it really touches her.
We have all be so consumed by what is going on that our energy is truly sapped the end of the day. We know that you want updates on how Mom is doing, but sometimes we just don't have the energy or desire to get on the phone. I'm sure you understand.
We hope you will accept this website as a way of giving you information when we need a break from talking.
We have all be so consumed by what is going on that our energy is truly sapped the end of the day. We know that you want updates on how Mom is doing, but sometimes we just don't have the energy or desire to get on the phone. I'm sure you understand.
We hope you will accept this website as a way of giving you information when we need a break from talking.
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