Special Thanks

I am ending this blog with a special thanks to everyone who has said prayers, sent food, sent flowers, and especially those who stood by our sides the past few days. The wake and funeral are horrible to go through, but I know that the hardest part is only just beginning. It's in the day to day living without her that seems impossible right now. My sisters and I do realize how lucky we are to have not only eachother, but to be surrounded by great friends and family members. So again, on behalf of the three of us, our families and our mom;s siblings Thank You.

He only takes the best

~~He Only Takes The Best~~~~

God saw you were getting tired,
and a cure was not to be.
So he put his arm around you
and whispered come with me
with tearful eyes
we watched you suffer,
and saw you fade away.
Although we loved you deeply
we could not make you stay.
A golden heart stopped beating,
Hardworking hands to rest.
God broke our hearts
to prove to us,
He only take the best


By Jordan Memmel

Join the Angels Mom

Join the Angels Mom

A daughter without her mother is heartbreaking enough
But God did the right thing when he saw you suffer so much,
You will still be there to guide us in life, but just from another place,
And it is now Heaven’s angels who are blessed with your loving face.

So join the angels mom, they are lucky to have you,
But don’t forget we love you and you’ll be greatly missed too
Memories of you will be nothing but fond,
Its going to be hard without you mom,
but it wont be for long

I am no longer scared of death, I no longer live in fear,
For I know that when God calls me, you’ll be near,
We’ll try our best to make you proud and always smile,
Even though being happy again, may take a while

Just promise to look down on us
and help us in times of need,
Now go make the most of it mom,
from the pain and suffering
you’ve finally been freed.

Memories for broken hearts
So many memories in all years past,
So many jokes, so many laughs,
So much love you liked to share,
You never said, but we knew it was there.
The love you had for everyone, was the rarest you could find.
That love is sacred and will follow us through time.

We knew you didn’t want to leave,
You hated all goodbyes,
But this was by far the hardest,
you loved the life you would leave behind.

We knew you would be going soon,
You were leaving us in that room,
It wasn’t you upon that bed,
You weren’t Mom we all said.
You were just a figure.

In our hearts you kept a beat,
In our thoughts you would now be.
So as your body draws to a close, we say,
We love you, and you love us too,
And that will always be the way.

All you wanted was to be free,
From pain and misery,
You just wanted to walk for miles around,
You wanted to be with nature and the faintest sound,
That’s all you wanted, just that wish,
You’ve got it now,
You are in peace,
Your wish has come true
your happy now and we are too.

Your spirit it wanders and watches us,
and if you could speak,
I know what you’d say,
I’m sorry,
I’m sorry everyone,
I must go now, I can not stay.

Thoughts....

Well, just when you think things can't get worse they somehow do. Yesterday, Jamie, Erinn and I had to plan our mother's funeral. We needed to choose a casket to bury our mother in. I remember being in that same room choosing a casket for my dad a few years ago, yet it seemed like only yesterday. We had mom then, now we only have eachother. I say only but I know how lucky we are to be able to lean on eachother. Whenever we feel like no one can possibly understand what we are feeling we can find comfort in knowing that we are each going through the same thing. Other people who've lost their mother think they understand but unless your mother was your bestfriend, your heart, your soul......you can't possibly understand.
Tomorrow begins the morbid part of this whole process. To view my mother in her coffin is going to be so difficult. As difficult as watching her take her final breathes? No, but horrible and gut wrenching no less.
I don't know how to go on living day to day without being able to talk to her. I know what she wanted for me and my sisters I just don't know how to do that for her.
I feel like I can't breathe. There is this constant tightness in my chest as if my heart is being suffocated. There is no doubt in my mind that my heart broke when my dad died. Now it has surely been severed, beyond any repair. My heart will never be the same........I will never be the same.......Our family will never be the same.

Laying Mom to Rest

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

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.

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.

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.

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.

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.

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.

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.

Saturday

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.

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.

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.

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.

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.....

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 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.

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.