James Stephen Romanelli Funeral Home
8901 Rockaway Boulevard
Ozone Park - Queens
New York 11416
Phone: (718) 277-8340
Monday and Tuesday
2-5 and 7-9
The Funeral Mass
Our Lady of Grace Church
100-05 159 Ave
Howard beach, Ny 11414
Wednesday 10:15AM
Friday, August 3, 2007
36 DAYS
36 days ago my mother my mother was diagnosed with cancer and now she is gone. We got phone call at 1AM to go back to the hospital. Every organ had failed even her skin cells were dying. The choices were to wait for her heart to fail or remove the ventilator. We choose the latter. By 3:45AM she was gone and with her are our hearts
Thank you all for your continuous prayers.
Funeral arrangements will be posted as soon as they are finalized.
Thank you all for your continuous prayers.
Funeral arrangements will be posted as soon as they are finalized.
Thursday, August 2, 2007
MY AUNT
About 8 weeks ago my aunt, who is more like a sister to my mom, had heart surgery which later led to cardiac arrest. She has been on a ventilator and unresponsive, for the most part, since then. My cousins have been going through hell trying to get her the best care possible and to remain positive. She was admitted into a rehab center two weeks ago and has been making small advances. Unfortunately her progress is too insignificant according to the insurance company. They will no longer pay for her to stay there. My cousins are being forced to put her into a nursing home. I know that you have all been generous enough to pray for my mom and my sisters and I but if you can find it in your hearts to extend your prayers a Little further my aunt Grace Ann and her girls need them too. Both my mom and her are strong women. They continue to surprise us, and the medical staff each day. Please keep praying for them both we feel the love from everyone and it helps. Thanks
Another Night
Mom started dialysis about two hours ago. So far it is too early to tell if it is giving any benefit but at least there are no complications from it. She bled a lot during the procedure but the docs had it under control.
She was taken off of the sedation IV at 11 this morning. Each day ICU patients are evaluated for responsiveness. Yesterday she moved her hands, head and foot so she was put back on sedation's. Today she hasn't moved at all even without sedation. The doctor seems to think this might be because her prior medication has not been metabolized and is therefore just "hanging around" and still doing its job. We are of course concerned that she may be uncomfortable and just too weak to respond. The doctor said that if she is uncomfortable she would grimace, flinch and/or her heart rate would rapidly increase. If that should happen the nurse will give her sedation again.
My aunt (mom's sis) drove in form Albany today. I'm sure mom was happy to hear her voice. They haven't seen each other in a few years.
I just got off the phone with mom's night nurse. She said nothing much has changed since we left. She took her off of one of her three pressure medications and so far she is holding steady. Her temperature is now 100.2 which is the lowest it has been in two days. A small step for a nurse treating her for the first time, but a glimmer of hope for us. Maybe, just maybe, the dialysis is flushing the toxins out of her body. The doctor also said that 10-14 days after chemo the body starts to regenerate cells and therefore the blood counts begin to improve. Right now we are at day 10 so there is a chance that between that, the antibiotics and dialysis she may be able to beat this infection. Her body is in complete shock right now. Little by little we pray to see improvements.
She was taken off of the sedation IV at 11 this morning. Each day ICU patients are evaluated for responsiveness. Yesterday she moved her hands, head and foot so she was put back on sedation's. Today she hasn't moved at all even without sedation. The doctor seems to think this might be because her prior medication has not been metabolized and is therefore just "hanging around" and still doing its job. We are of course concerned that she may be uncomfortable and just too weak to respond. The doctor said that if she is uncomfortable she would grimace, flinch and/or her heart rate would rapidly increase. If that should happen the nurse will give her sedation again.
My aunt (mom's sis) drove in form Albany today. I'm sure mom was happy to hear her voice. They haven't seen each other in a few years.
I just got off the phone with mom's night nurse. She said nothing much has changed since we left. She took her off of one of her three pressure medications and so far she is holding steady. Her temperature is now 100.2 which is the lowest it has been in two days. A small step for a nurse treating her for the first time, but a glimmer of hope for us. Maybe, just maybe, the dialysis is flushing the toxins out of her body. The doctor also said that 10-14 days after chemo the body starts to regenerate cells and therefore the blood counts begin to improve. Right now we are at day 10 so there is a chance that between that, the antibiotics and dialysis she may be able to beat this infection. Her body is in complete shock right now. Little by little we pray to see improvements.
Thursday Afternoon
We haven't gotten any good news today. Things are pretty grim. Mom's body is just shutting down. Her kidneys are not working at all, her liver enzymes are increasing and her level of oxygen is not steady even though she is receiving full support from the ventilator. Her sedatives were stopped to evaluate her consciousness. When they did this yesterday she moved her hands, arms, feet and head. Today she is staying out even without the sedatives. A last resort is to try dialysis to remove the fluids form her body. Her hands, legs, belly are all twice their normal size form all of the fluids. Mom's platelets level is too low right now for them to set up a dialysis line. We are hoping it will improve soon so we can try. It truly is the last possible thing the doctors can do to help her fight this overwhelming blood infection. I hope to have better news next time....
Wednesday Night
It's late and I am still awake. I should be getting some sleep since I am home but I just can't seem to will body to relax right now.
When we left the hospital tonight mom was completing her last bag of IV fluids. They pumped her with about 5 liters in the past 15 hours in the hopes of stimulating her kidneys to make urine. All she is doing is holding onto fluid. Her stomach is so big she looks pregnant to me and her hands/fingers are 3x their normal size. She also still had a fever.
I spoke to her nurse at 11 o'clock tonight and she said that the fluids had still not worked, mom still has no urine. She said that a diuretic was ordered and would be tried soon. If that doesn't work, the last resort is dialysis. One doctor last night said that she is too weak for that though. So we are really holding our breath in the hopes that mom will be able to get urine out tonight.
The nurse also said she had a difficult time keeping mom saturated tonight. Every few hours they change her position. When they do her oxygen level drops from 94-95 to the upper 70s-mid 80s. That means there is compression her lungs, probably due to fluids. The result will be less movement of now.
The doctors are concerned that mom seems so dependent on the ventilator. She is receiving 100% and still only at an average of 94%. We were told this morning that her condition is still critical. Tomorrow morning when we see the doctors we are sure they are going to be asking for either consent to try dialysis or asking for some very difficult decisions to be made. Either way we will feel helpless and scared.
I am off to get some rest now. Thank you as always for your prayers and good wishes.
When we left the hospital tonight mom was completing her last bag of IV fluids. They pumped her with about 5 liters in the past 15 hours in the hopes of stimulating her kidneys to make urine. All she is doing is holding onto fluid. Her stomach is so big she looks pregnant to me and her hands/fingers are 3x their normal size. She also still had a fever.
I spoke to her nurse at 11 o'clock tonight and she said that the fluids had still not worked, mom still has no urine. She said that a diuretic was ordered and would be tried soon. If that doesn't work, the last resort is dialysis. One doctor last night said that she is too weak for that though. So we are really holding our breath in the hopes that mom will be able to get urine out tonight.
The nurse also said she had a difficult time keeping mom saturated tonight. Every few hours they change her position. When they do her oxygen level drops from 94-95 to the upper 70s-mid 80s. That means there is compression her lungs, probably due to fluids. The result will be less movement of now.
The doctors are concerned that mom seems so dependent on the ventilator. She is receiving 100% and still only at an average of 94%. We were told this morning that her condition is still critical. Tomorrow morning when we see the doctors we are sure they are going to be asking for either consent to try dialysis or asking for some very difficult decisions to be made. Either way we will feel helpless and scared.
I am off to get some rest now. Thank you as always for your prayers and good wishes.
Wednesday, August 1, 2007
Watching closely in MICU Wednesday, 8/1
It's almost 1pm, Wednesday. We are all thoroughly exhausted. As most everyone knows from phone calls and text messages, Mom was intubated yesterday and moved down to MICU. Her BP was very, very low and she was not responsive at all. Dr's first tried a Bipap, but it did not give her enough oxygen, so the breathing tube was warranted. Dee and I basically broke down several times over the course of the afternoon, and struggled with decisions of what to do next. When Jamie and Jeff finally arrived by train, we did it all again. By the time Scott there, we were feeling numb and unsure of what do even do with ourselves.
Several of Mom's doctors have told us that we made the right decision. We were very scared last night when the MICU fellow told us that things didn't look good and that the next couple of hours would tell if she would survive the night. They asked again about our decisions for rescusitation (so naturally, we flipped out again). We were in our most panicked state yet and called Uncle Joe and Aunt Betsy to let them know that we were given such a grim prognosis. Uncle Joe left right away, but thankfully (someone is hearing our prayers) she stabilized and her BP came up. There is still a fever today, but the pressor levels have been reduced a little.
We have no promises, but they think they can fight the infection, stabilize her BP without the need for pressor meds and get her off the breathing tube. She's now getting full assistance from the machine, but the goal is to eventually get her to a point which she is partially breathing on her own, then fully, then extubation. This can take quite a while, and we are just going day by day. She is very sedated and unaware of what is going on. We still try to talk and sing to her whenever we can. We know that she doesn't like the feel of tube, because she was pulling at it yesterday when her sedation needed to be a little lower.
Prayers are the best thing you can all provide right now. We need Mom to take in the fluids she is getting through IV and start passing urine again. Her liver function is also not well, but we are told this is very normal when the body is having trouble maintaining pressure, it is likely functions will return when she is better hydrated.
We are hoping for a quiet day so that we can go home and get some sleep tonight.
Love, Erinn, Dee and Jamie.
Several of Mom's doctors have told us that we made the right decision. We were very scared last night when the MICU fellow told us that things didn't look good and that the next couple of hours would tell if she would survive the night. They asked again about our decisions for rescusitation (so naturally, we flipped out again). We were in our most panicked state yet and called Uncle Joe and Aunt Betsy to let them know that we were given such a grim prognosis. Uncle Joe left right away, but thankfully (someone is hearing our prayers) she stabilized and her BP came up. There is still a fever today, but the pressor levels have been reduced a little.
We have no promises, but they think they can fight the infection, stabilize her BP without the need for pressor meds and get her off the breathing tube. She's now getting full assistance from the machine, but the goal is to eventually get her to a point which she is partially breathing on her own, then fully, then extubation. This can take quite a while, and we are just going day by day. She is very sedated and unaware of what is going on. We still try to talk and sing to her whenever we can. We know that she doesn't like the feel of tube, because she was pulling at it yesterday when her sedation needed to be a little lower.
Prayers are the best thing you can all provide right now. We need Mom to take in the fluids she is getting through IV and start passing urine again. Her liver function is also not well, but we are told this is very normal when the body is having trouble maintaining pressure, it is likely functions will return when she is better hydrated.
We are hoping for a quiet day so that we can go home and get some sleep tonight.
Love, Erinn, Dee and Jamie.
Monday, July 30, 2007
It's Still Monday
Mom's nurses tonight are Alden and Tatiana. Tatiania is new to this wing of the hospital so they are tag teaming it for now. They're pretty good, especially Alden, but not good enough for me to leave tonight. I've made my bed on the sofa and plan on getting comfy soon. The one-on-one person hasn't shown up, but it's probably best at this point for her to have one of "her girls" (as mom calls us) with her.
The new medication for the dizziness seemed, at first, like it may have improved things. However, that was very short lived. Mom is still complaining of a bad headache and of being nauseous. At least, she is staying put in bed though. Any small improvement is greatly appreciated.
Another bump in the road we had tonight is that she has a fever. Her temp has been rather low for the past few weeks....averaging around 95.6. In the past few days it started creeping up to the more "normal" 98.6. This afternoon it went to 99 and shortly there after to 99.7. By 8PM it was 101! Since mom is nuetropenic (very low white blood cell count) having an infection is very dangerous. At the time she started having the fever she was receiving a unit of blood. It needed to be stopped and her blood had to be drawn to check if she was having a reaction to it or if she has a virus of some sort. We are praying there is no virus because that could really set us back.
Due to the nuetropenic state and very low potassium mom's room also needed to be changed today. She only moved around the corridor but what a hassle to move all of her things! She is now hooked up to a heart monitor. So far there haven't been any signs of distress to her heart but so much of what's going on could be taxing to the heart so they want to monitor her carefully.
Mom is very dizzy right now and complaining of difficulty breathing too. She has a great deal of mucus in her chest that you can clearly hear when she breaths. The breathing treatments are loosing it but she needs to get it up for full relief. Whenever she coughs she holds her stomach, so she is holding back due to that pain I'm sure.
As for me, I miss being at home with Tommy in my own bed. He's been so great through all of this. It sucks for him to not have me home but he is of course very understanding. I wouldn't even consider being anywhere else then right here with my mom, no matter what. I can't even imagine going back to work in a few weeks and only seeing her on the weekends. I have to figure something out, and soon.
Good night for now and thanks for checking in with us. If you are reading this right now then you obviously care about my mom and "her girls". Please keep praying and sending positive thoughts this way.
The new medication for the dizziness seemed, at first, like it may have improved things. However, that was very short lived. Mom is still complaining of a bad headache and of being nauseous. At least, she is staying put in bed though. Any small improvement is greatly appreciated.
Another bump in the road we had tonight is that she has a fever. Her temp has been rather low for the past few weeks....averaging around 95.6. In the past few days it started creeping up to the more "normal" 98.6. This afternoon it went to 99 and shortly there after to 99.7. By 8PM it was 101! Since mom is nuetropenic (very low white blood cell count) having an infection is very dangerous. At the time she started having the fever she was receiving a unit of blood. It needed to be stopped and her blood had to be drawn to check if she was having a reaction to it or if she has a virus of some sort. We are praying there is no virus because that could really set us back.
Due to the nuetropenic state and very low potassium mom's room also needed to be changed today. She only moved around the corridor but what a hassle to move all of her things! She is now hooked up to a heart monitor. So far there haven't been any signs of distress to her heart but so much of what's going on could be taxing to the heart so they want to monitor her carefully.
Mom is very dizzy right now and complaining of difficulty breathing too. She has a great deal of mucus in her chest that you can clearly hear when she breaths. The breathing treatments are loosing it but she needs to get it up for full relief. Whenever she coughs she holds her stomach, so she is holding back due to that pain I'm sure.
As for me, I miss being at home with Tommy in my own bed. He's been so great through all of this. It sucks for him to not have me home but he is of course very understanding. I wouldn't even consider being anywhere else then right here with my mom, no matter what. I can't even imagine going back to work in a few weeks and only seeing her on the weekends. I have to figure something out, and soon.
Good night for now and thanks for checking in with us. If you are reading this right now then you obviously care about my mom and "her girls". Please keep praying and sending positive thoughts this way.
Monday, 7/30
Thankfully, last night marked our first night where no one needed to stay with Mom. She was finally having solid sleep. However, today is another story. She is back to being very agitated and unable to get comfortable due to dizziness.
Mom doesn't even really talk to us much right now. She will usually say "uh oh". When we say what's wrong, she will make a circling motion with her pointed finger to indicate that the room is spinning. Meclazine is not touching the dizziness at all. They gave her some Compazine by IV yesterday while I was here, but she complained of nausea and dizziness soon after and it could not be given for another 4 or 5 hours. Dee was able to get her to take the Meclazine in pill form 2 times today. She's very dry in the mouth, but refusing to try to drink. I get her to actually open her eyes and give me a dirty look only when I drip water into her mouth with the straw.
By the time I got her at 5:30, Mom began to get very antsy, complaining of nausea and dizziness and trying to get out of bed. We told mom's nurse for today (a fabulous guy named Andrew) about it all and he called the dr only to be told she can't have anything else. When I threatened to medicate her myself (I learned to be a queen B from my Mom), they decided to show up and hear what we had to say.
Thus, they will be trying a new med for the dizziness and hopefully something for the anxiety if she cannot be convinced to stay put. They suggested they might be able to get a "one on one" for her so that we wouldn't need to stay the night. I'm not sure that she would listen to anyone or feel comforted without us here. When she's in this state, she wants us to hold her hand all the time. Will a one on one do that? Doubtful.
We also talked to the doctors about her complete lack of mobility now that they have transitioned to medications intended to make her less sedated. Um, not really working and she's probably better off on what she was getting before. They took her off the Dilaudid and put her on Morphine, but she's now getting Morphine many more times per day than she was getting the Dilaudid. Is this really what they think "survival" should be?
Dee and I also expressed how angry we are that the port procedure (which they said would make things so much easier for her) led to the punctured lung, collapse and subsequent procedures. We really feel this was the trigger for the downward turn Mom has taken. I think our point was taken, but it probably won't be the last time I bring it up. In our words - how ridiculous.
We'll keep you posted, but suffice to say we are not letting Mom go down without a fight.
Mom doesn't even really talk to us much right now. She will usually say "uh oh". When we say what's wrong, she will make a circling motion with her pointed finger to indicate that the room is spinning. Meclazine is not touching the dizziness at all. They gave her some Compazine by IV yesterday while I was here, but she complained of nausea and dizziness soon after and it could not be given for another 4 or 5 hours. Dee was able to get her to take the Meclazine in pill form 2 times today. She's very dry in the mouth, but refusing to try to drink. I get her to actually open her eyes and give me a dirty look only when I drip water into her mouth with the straw.
By the time I got her at 5:30, Mom began to get very antsy, complaining of nausea and dizziness and trying to get out of bed. We told mom's nurse for today (a fabulous guy named Andrew) about it all and he called the dr only to be told she can't have anything else. When I threatened to medicate her myself (I learned to be a queen B from my Mom), they decided to show up and hear what we had to say.
Thus, they will be trying a new med for the dizziness and hopefully something for the anxiety if she cannot be convinced to stay put. They suggested they might be able to get a "one on one" for her so that we wouldn't need to stay the night. I'm not sure that she would listen to anyone or feel comforted without us here. When she's in this state, she wants us to hold her hand all the time. Will a one on one do that? Doubtful.
We also talked to the doctors about her complete lack of mobility now that they have transitioned to medications intended to make her less sedated. Um, not really working and she's probably better off on what she was getting before. They took her off the Dilaudid and put her on Morphine, but she's now getting Morphine many more times per day than she was getting the Dilaudid. Is this really what they think "survival" should be?
Dee and I also expressed how angry we are that the port procedure (which they said would make things so much easier for her) led to the punctured lung, collapse and subsequent procedures. We really feel this was the trigger for the downward turn Mom has taken. I think our point was taken, but it probably won't be the last time I bring it up. In our words - how ridiculous.
We'll keep you posted, but suffice to say we are not letting Mom go down without a fight.
Sunday, July 29, 2007
Sunday
Well, Jamie and Jeff spent the night with mom on Saturday. In fact Jamie wrote Saturday's blog although it has my name. All day and all night she continued to be restless and grew very uncooperative. After Jamie put mixed medicine into chocolate pudding and persuaded mom into eating it she wouldn't take anything else from her. In fact the only person she responded positively too was Jeff!
By 6AM after having mom on the potty for the umpteenth time and having her refusing to get up and back into bed again, a catheter was put in. This avoids her from experiencing extreme dizziness and feeling like she is going to fall. When the catheter was first put in the doctor said that if she doesn't fill up at least 200cc of the bag it has to come out. Well, she filled it up tp 1400! No wonder she was so uncomfortable. Jamie said that after it was put in mom's demeanor changed immediately. She lay ed back and slept without popping up for a few hours. If only we had known to do this a few days ago.
Today she's been pretty knocked out still. The only time she really budges is when she is moved. She needed to go for a brain CT and an abdomen Ultrasound. Each time she was very uncomfortable because of the dizziness which brought on nausea. She was insisting that she was falling and sinking. i kept holding her hand and reassuring her that she was safe. I told her if I could make her feel better I would. She responded by saying "I know you would, I know" as she patted the back of my hand. A moment of my "real" mother coming through. The brain CT was negative thank you God! The ultrasound results will be in tomorrow although the tech did not see anything suspicious on her gallbladder which the doctors were concerned about.
Tonight mom was also classified as neurophenic (spelling?) That means that her white blood cell count is extremely low. She can't leave her room without having a mask on. If anyone has the slightest cold they must put a mask on to be near her. This is all to risk infection. It is a common result of the chemo but yet just something else to worry about.
Since mom is so lethargic and no longer needs the constant help to get up to the potty I decided to come home to sleep instead of staying at the hopsital. One of our favorite nurses, Traci, is there with her tonight. She's been with us for the past three nights. If it was someone else I know I wouldn't have felt comfortable enough to leave. Traci is very attentive and caring. She took care of mom one day last weekend too when she was more herself. Mom told her about her grand kids and about me getting married. So Traci is invested in getting her better with us. Too bad she will be off for the next two weeks.
I am going to give Traci a call and check in on mom and then get some good sleep. That will make two nights in a row! Hopefully she will hae a good day tomorrow.
By 6AM after having mom on the potty for the umpteenth time and having her refusing to get up and back into bed again, a catheter was put in. This avoids her from experiencing extreme dizziness and feeling like she is going to fall. When the catheter was first put in the doctor said that if she doesn't fill up at least 200cc of the bag it has to come out. Well, she filled it up tp 1400! No wonder she was so uncomfortable. Jamie said that after it was put in mom's demeanor changed immediately. She lay ed back and slept without popping up for a few hours. If only we had known to do this a few days ago.
Today she's been pretty knocked out still. The only time she really budges is when she is moved. She needed to go for a brain CT and an abdomen Ultrasound. Each time she was very uncomfortable because of the dizziness which brought on nausea. She was insisting that she was falling and sinking. i kept holding her hand and reassuring her that she was safe. I told her if I could make her feel better I would. She responded by saying "I know you would, I know" as she patted the back of my hand. A moment of my "real" mother coming through. The brain CT was negative thank you God! The ultrasound results will be in tomorrow although the tech did not see anything suspicious on her gallbladder which the doctors were concerned about.
Tonight mom was also classified as neurophenic (spelling?) That means that her white blood cell count is extremely low. She can't leave her room without having a mask on. If anyone has the slightest cold they must put a mask on to be near her. This is all to risk infection. It is a common result of the chemo but yet just something else to worry about.
Since mom is so lethargic and no longer needs the constant help to get up to the potty I decided to come home to sleep instead of staying at the hopsital. One of our favorite nurses, Traci, is there with her tonight. She's been with us for the past three nights. If it was someone else I know I wouldn't have felt comfortable enough to leave. Traci is very attentive and caring. She took care of mom one day last weekend too when she was more herself. Mom told her about her grand kids and about me getting married. So Traci is invested in getting her better with us. Too bad she will be off for the next two weeks.
I am going to give Traci a call and check in on mom and then get some good sleep. That will make two nights in a row! Hopefully she will hae a good day tomorrow.
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