Saturday, April 30, 2005

Relief

An update carried over from 4/26 @ 4:00p.m: Donna S. If you could please call my cell phone, I would greatly appreciate it. If you would like to e-mail me instead, you can reach me at asps@berlin.com as I can't seem to get into YM and I have some information I think you need.

Several things to talk about tonight, I will try to make as much sense as possible. I haven’t slept in almost two days. I am literally fighting to keep my eyes open, so please just excuse whatever grammatical errors I might make.

My Dad and Auntie Kay made it into Tulsa late last night. The ambulance road trip was semi-uneventful. They did have some problems before ever leaving, but it was a red tape issue and it was taken care of by late afternoon. By 2a.m Kay was settled into another ICU bay and was resting somewhat comfortably.

Her surgery was scheduled for 9a.m, but after meeting with the surgeon at 6a.m, we all made the choice to do a little watching and waiting to see if Kay’s blood pressure evened out. The theory was that it was elevated due to the stress of the trip. That must have been true, because by 12:30 the decision was made to take her to surgery at 2p.m. Her surgery was estimated to take between five and six hours. She was taken from us at 1:30. We didn’t see her again until 8p.m this evening. The actual surgery took 6 hours and 12 minutes. The surgeon came to speak with us while she was being watched in the recovery room.

Several months ago, Kay made the choice that she would not be undergoing any reconstruction surgery. The surgeon told us tonight that this was a very wise decision as he was forced to take out a greater portion of her chest wall than he first expected. She lost a great deal of blood, but we knew that would happen and the surgical team was prepared. Her blood pressure only skyrocketed once near the end of surgery, but it came back down without the aid of medication.

Her breathing situation has been a major concern. None of us knew how she would be able to handle breathing after being on the ventilator again during surgery. Surprisingly, the decision was made to remove the ventilator while she was in recovery. She has done fairly well with the aid of the bi-pap machine.

She will remain in ICU for a number of days. The main concern right now is making sure she doesn’t end up with any type of infection. Everything else has taken a slightly removed second place. Due to her current immune system, any infection could be tragic, so we want to avoid that in every manner possible. She is not in isolation currently, but I anticipate that if needed she will be.

Although she is still very medicated from the surgery as well as the many medications she is receiving to keep her comfortable, we were able to speak with her a few hours ago. She is aware that the surgery is over, that she did amazing, and that we all love her. She knows you all were cheering her on, so thank you.

Sophie remains hospitalized, but we have been told that she may be issued a pass this weekend so we can take her over to see Kay. I know she wants nothing more, so I hope this is achievable. Sophie slept most of yesterday, she does appear to have a bit more color today. She was able to hold down some soft foods today, and it is major improvement over the past few days. We know that she is trying hard, but she also knows that she needs to take time for her own health right now.

Thank you all for your comments, your arrivals, your prayers, your calls, and your concern in wanting to help. After my mini-nervous breakdown and your lovely outpouring of compassion, I must admit that I am handling things a bit easier today. I knew that they were coming, but when I looked up last night and saw Tessa standing in front of me (carrying a cup of coffee, I might add), I began to sob. They were tears of relief. I don’t think I realized just how much I needed someone else here right now. She immediately sent me to rest, but rest wasn’t possible. Instead I drove around the city while waiting on my Dad and Kay to arrive in town. Today, Tessa stayed with Sophie while we were at the other hospital with Kay.

Tonight, Sophie is having a sleep over with Barb. In the morning, I will return to that hospital to be with her while she goes through some grueling testing. After that we will be working on finding out about the mentioned pass. For tonight, I have been ordered to rest, so I am going to go to the hotel and do just that. Thank you for praying, please don't stop now.

Tuesday, April 26, 2005

Fatigued

Update added on 4/26 @ 4:00p.m: Donna S. If you could please call my cell phone, I would greatly appreciate it. If you would like to e-mail me instead, you can reach me at asps@berlin.com I can't seem to get into YM and I have some information I think you need.
Two Aunts.

Two States.

Two Hospitals.

Two legal medical directors.

Six hundred miles between the two.

If this gives you any inkling as to what we have been doing, I hope you can forgive all of us for neglecting e-mail, phone calls, visits. Things are hectic here right now and this is my plea for some help.

Kay is having surgery on Friday in Tulsa. On Thursday, she will be taken by ambulance to Tulsa, 600 miles from where she is now. We pray for a safe and uneventful trip. My Dad remains in Kansas City with my Auntie Kay. He will be riding with her on Thursday as they make the trip via an ambulance to Tulsa.

She has currently been in Intensive Care for 27 days as of today. She has made some remarkable strides in recovering and we are all cheering her on as she overcomes some major challenges. She is talking and it is a sound we are thanking God that we can hear again. She isn’t walking, but is cooperating in thrice daily physical therapy. We know that it won’t be long before she is walking on her own. For now, we accept her challenges. She is learning to accept them as well. Her long term memory is clear and sharp. At times, her short term memory is the same. Other times she needs to be reminded of things. We can handle this, of all things, this we can handle. As she is given less and less medication, we expect the short term memory to come back full force. For now, we deal with what we need to.

I have not seen Aunt Kay since Saturday as I am running between Tulsa and the Linda. My Auntie Sophie is in the hospital here in Tulsa. She was admitted on Saturday morning at her doctor’s request. This was not an easy choice for any of us to make. However, in light of her own health issues, this is what is best and she understands it. She is feeling better, today. She began to hint at wanting to be released this morning. Unfortunately, we both know this will not happen for a few more days.

I am Sophie’s second choice medical advisor (the first being Auntie Kay), so I am with her. My Dad is Kay’s, it only makes sense that he remains with her. We are both battle worn at the moment. I don’t know how much more any of us can handle. Auntie Sophie is distraught because she isn’t with Kay. Auntie Kay is unaware where Auntie Sophie is because none of us want to put a dent in the progress she has made, which is what will happen if she begins to worry about Auntie Sophie.

This is my plea. My Dad and I need some help. You have all so generously offered help when we have needed it, we have declined in the past. Today, that stops. Today, I begin to beg for help. Those of you that live in the Linda have already asked how to help (Pat, Tide is fine, thank you) and I have offered some suggestions. For those of you who are close enough to come sit with either Sophie or Kay, please call my cell phone so we can arrange some times for you. This would help both my Dad and I greatly right now. Friday, we will need someone to stay close to Auntie Sophie as Dad and I will both be at the hospital across town with Kay before she goes into surgery. We will remain there indefinitely. Anything you can do at this point will not only be appreciated and never forgotten, and it will also be a Godsend. (Jane, again, thank you for the home cooked meals, truly a wonderful gesture, thank you).

I don’t want this post to appear that I might be saying we haven’t gotten any help. We have, I can’t say thank you enough on behalf of our family. Some of you have gotten on a plane in the middle of the night and come here to sit with us. Some of you have brought us clean clothes and home cooked meals. Some of you have tended to the house at the Linda, watered plants, babysat for pets. We can’t thank you enough or stress to you how much this means to us. For those of you who want to help and don’t know how . . . this is my plea. Give us some of your time if you are able. If you aren’t able, could you please just pray for us? Pray that Auntie Sophie is able to begin to feel better, pray that Auntie Kay has no more setbacks, that surgery goes on as planned, that she does well during and in the aftermath. Pray that my Dad and I find some strength somewhere. Just pray, please.

Friday, April 15, 2005

Hope

As I sit here, I am agonizing over what I need to share. I don’t know if I should share with you the tragedies that have occurred in the last nine days or if I just should launch into how grateful we are that those tragedies have not taken someone we love. Should I share where we are from the medical standpoint or should I just tell you how much we have wept in knowing that Kay is alive and still with us? I must admit that my thoughts are running rampant at the moment.

In the past nine days, we have held fast to the hope that Kay could pull out of all of this. We have held fast to the promise that she is strong, that my Mom is watching out for all of us, and that we, as a family, could support each other as we waited throughout some very tense days. Most of all, we have held fast to the hope that all things have a purpose, that there would be meaning to what is going on, that we would be stronger because of it.

Last Friday, Kay was rushed back into surgery to control a massive bleed. This bleed was in a different area than the first bleed and further down than the aneurysm had been. We were told it was an undetected bleed, uncontrollable, and it would take her life. Moments earlier, she had been sitting up, talking, preparing to move out of the Intensive Care Unit. It always strikes me as amazing how fast things can change. One moment you can be talking, laughing even. The next moment, be one step away from death.

She was in surgery for more than six hours, and four of those were spent on a heart bypass machine. Essentially, Kay was medically deceased. We were not sure if she would be able to sustain the strength when it came time for them to end the surgery and pull her from the bypass. We have been told that 99% of patients who go on the bypass will need to have their hearts shocked after they are taken off. Kay showed us all amazing strength in not being one of those people. We have been told that her heart began pumping alone, with no outside help needed.

For the last seven days, she has been on a ventilator while her body had a chance to heal. She has been sedated, lifeless for days. Slowly over the course of the last few days, they have decreased the amount of sedation she was given. This allowed several things to take place. The greatest of these is the fact that we were allowed to see if Kay had continual damage. We knew that there was a very large possibility that she would have some lasting effects of the bleeds. We expected motor damage, possibly paralysis, and many more things. To our amazement, she has shown that she does not have the damage we all expected. One step short of a miracle? You decide.

Yesterday, Kay was taken back into surgery to close the opening on the back of her head. This was left open in the previous surgery due to swelling. While she was in surgery, her chest tube was also removed. At the end of the surgery, the decision was made to take her completely off the vent. Astonishingly, she has done wonderfully without it. She does need some assistance while sleeping, but this is to be expected. She will remain on oxygen as long as she needs it, this could be a lifetime necessity, but we are prepared to handle that.

All throughout the afternoon and evening, she slept off the remainder of the anesthesia. I volunteered to take last night as my night to sit with her so that my dad and Aunt Sophie could manage to get some rest. The ICU has some very strict rules regarding length of visits, etc. However, I am seeing over the course of the past week that they have allowed us to be with Kay more and more. Late last night, one of Kay’s nurses confided in me when she told me that they were calling Kay the "smiling miracle." The nursing staff has been wonderful and they have all fallen in love with Kay. They can see, just as we can, how much of a fighter she is. As I sat with her last night, I watched her breathe while on the aid of a bi-pap machine. Suddenly, I saw her eyes open and I must say that I began to cry.

We have all been told to expect her to have some memory loss, some confusion, etc. This will go away, we have been told. I expected it . . . but had no reason to. I asked her if she knew who I was. A nod. I asked her if she was in pain. No nod. I asked her if she was cold. A nod. After I tucked another blanket around her, I reached up to tuck it around her torso. As I bent over her, I felt her hand on my face. It was the most wonderful feeling, one that made the tears fall that much faster. She quickly fell back asleep and I sat in the silence, crying.

In those few moments, she gave me back hope.

Today, we have received the results of a bone marrow biopsy done earlier this week. The results were not far off from what we expected. Kay has not had chemo in 23 days. Her surgery was scheduled for this past week, chemo should have started shortly after. Right now, she is too weak to go through another surgery. For now, a plan has been set into place. As I type this, Kay is getting a steady drip of Taxol. She has been given Ativan and Zofran beforehand and will be given them as needed throughout the next few days. The Taxol is only one of three chemotherapy agents that she would normally be receiving. Although the Taxol is one of the more severe agents, it is also one of the more effective agents. A smaller dose can be given and be much more aggressive than some of the others.

She was alert enough this morning and seemed to understand what was taking place. We did give her the option to decline it, but begged her not to make that choice. She didn’t and Taxol began after a round of pre-medications were given. Due to the combination of medications, she is sleeping once more. However, it is not sedation and we are grateful for that.

Over the course of the next few days, several things will happen. One of the most important for us is that Kay’s vocal chords will begin to return to their normal size. Right now, they are very swollen due to some effects of the days on the ventilator. As the swelling goes down, her ability to speak will return, something we are all looking forward to! As the next few days unfold, we will also be able to tell if there any other residual effects of the bleeds or the surgery. The medications she is being given in adjunct to the chemotherapy makes it difficult to gauge how much, if any, damage is actually present. As these wear off, the ability to gauge will become clearer.

Also happening during the course of the next few days is something that is going to be harder for us to deal with. Although Kay is weak right now, we also have to remember that she has a cancer that is going to ravage her body if we don’t take some action. Decisions will be made this weekend that won’t be easy to make, I am sure of this. Please pray that we are guided to what is best for Kay, not for us.

We would like to thank each of you individually, but we honestly are so blessed that it is impossible. On behalf of our family, I would like to express our appreciation for a few special people.

Tessa and Denver, you already know how much we love and we all want to say thank you for being here so much during the past few weeks. You both have dropped everything to come hold our hands and we are forever indebted to you.

Andy and Barb, we know how much you care for Kay and for all of us. I speak for each of us when I say we love you both. Thank you for taking care of so much without even being asked. We are grateful for your support.

Mike, Rob, Andrew: Words cannot express what it means to our family that you have done this. It touches me to know how many have pulled together this event. Thank you so much for all of your help in making the arrangements. I have no way of making it clear how much we appreciate your presence in our circle of loved ones.

Donna, I have so many words for you that I had hoped to share with you this weekend. For now, I will save most of them and share them with you soon. For the time being, please know we all love you and we count ourselves blessed to consider you family. Your prayers, thoughts, compassion, and love for all of us has always been (and always will be) appreciated.

Jane, Ellie, Rush: You have no idea what it meant to me to look up and see you all standing there. Thank you for coming, for holding us up, for making sure we had the chance to tend to some things outside of the hospital. I know that I speak on behalf of the entire ICU staff when I say thank you for dinner. Your thoughtfulness of bringing a home cooked meal to us was astounding. (Jane, my Dad says to make sure I say thank you....he said there was nothing better than your banana pudding! The rest of us wouldn’t know, HE ATE IT ALL!)

Most of all, for those of you in Linda, thank you so much. I have said it before, but you can’t know how much it means to us that you are tending to the mundane things for us right now. We can rest easily knowing that everything there is taken care of, thank you all.

For everyone else that I have not mentioned, there are so many of you that have touched us in one way or the other. Please know it hasn’t gone unnoticed and we love you for just being there, for constantly praying, for always supporting us.

I had promised myself I wouldn’t cry, but here I am. During the past 16 days, we have been on a constant roller coaster ride, not knowing if it would ever stop. Right now, it hasn’t stopped, but it has certainly slowed down.

For that, we are grateful.

For all of you, we are thankful.

We love each of you.

Wednesday, April 06, 2005

Whirlwind

I have been asked to write an entry that summarizes the past few days for our family. As I sit here in what was once my sister’s favorite room in this house, I am reminded that nothing is how it should be. This house should be filled with laughter and love. There should be the smell of fresh baked cookies floating up the stairs. My daughter should be outside with her Aunt and her Grandfather, tossing a ball back and forth. Nothing is how it should be.

My sisters are gone. My mother is gone. My father feels like he is losing his family. My Aunt Sophie is trying to figure out how to care for the love of her life. My husband is a thousand of miles away, once again caring for our daughter by himself. Kay lays in the intensive care unit 200 miles away, struggling for her life. Nothing is how it should be.

Since Saturday morning, I have remained in close proximity to Kay’s side, to help support my family as we prepared to say goodbye to yet another person we all love. When I boarded the plane on Friday morning, I had no idea if I would see her alive again. She was dangerously close to death and there was no one on her care team that believed she would make it through the night, much less make it until today.

Kay has shocked us all by making it past those first few hours, making it through not one, but two major brain surgeries in the past four days, and making some serious strides in proving she can fight more than any of us ever thought she could. While she is still in very serious condition, she is stable. That is a true miracle.

While none of us want to release the breath we are collectively holding, we all know how fast things can change. We, as a family, would like to thank you for your prayers, well wishes, comfort, and support. So many of you have e-mailed, called, visited, or stayed on the sidelines and helped us during this time, we are unable to thank you each individually. Please know that your kindness is appreciated, noted, and it means more to us than we can tell you.

Many of you have asked how you can help right now. First and foremost, do not stop praying or thinking good thoughts. Kay is not out of the woods, so to speak. She has many things going on right now and while it looks like we have escaped a brush with death, we all know that her body is in turmoil right now. It is becoming increasingly harder for the medical staff to pinpoint what is the biggest concern right now. Please pray that they are able to help her in every way possible.

For those of you that live in the Linda or the Joplin area, thank you so much! I didn’t know what to expect when I drove here today, I am amazed by your generosity and compassion for our family. To each of you who have taken it upon yourselves to do so many things, you don’t know what a relief it is to not worry about the mundane things of life right now. From the bottom of my heart, I speak for our entire family when I say thank you.

I will be returning to the city in a few hours. For now, I think I will sit here in the silence, remember what once was, what should be, and now, what is.

Friday, April 01, 2005

Missouri

They say it will be nothing short of a miracle if she makes it out of surgery alive.

They say it has been there for years, waiting for the right moment to attack.

They say she is in critical and not stable condition.

They say it could explode at any moment and they can’t stop it.

They say she could bleed to death during surgery.

They say any sudden movement could cause it to burst.

They say she needs prayers and a miracle to survive.

They say it is an anomaly.

They say it is fatal 99% of the time.

They say they don’t expect this to be the exception.

They say she is not conscious.

They say this is so she can remain calm and not become agitated.

They say she won’t feel it when it does burst.

They say she won’t feel the pain and her death will be near instant.

They say she isn’t aware how close she is to death.

They say she may be gone before I get to say goodbye.

They say I need to come, come now.

They say they need me now.

They say please pray.

I’m going to Missouri.