Monday, January 31, 2011

It is me again--a couple of days later, and hopefully somewhat stronger. My sister-in-law, Nancy, left...and I have to say I miss the extra pampering she gave to me. Spence just took me out on the treadmill, and I walked (very slow speed) for a big 5 minutes! Yesterday I walked to the end of my street...and got to see some of my neighbors. Today was somewhat rainy and cold,and I really don't want to get I stayed inside.

Can you believe this? I ate some lasagne, some bread, and some salad tonight. WOW--is that ever progress!! I stilll eat fairly small amounts, and am reminded to eat them very slowly...but it is wonderful to eat REAL food. (the orange jello and chocolate pudding in the hospital don't really count as food!) Both Brady and Kelsey gave us a concert tonight (that was our family night)--Kelsey on the piano and Brady on the guitar. It was very relaxing and nice.

My friend, Eileen Allred, came over to stay with me this morning. We are still a little nervous about me staying alone, but actually I can do it just fine. Eileen has been a tremendous support to me during this whole time, and has helped me often.

I am going to include some pictures for you. I know several of you have seen my new look through Facebook...but for those of you who don't have Facebook, you can see the new me. I am also going to include a picture of the scar on my neck--it is amazing how little you can really see it, and it is healing well. So here are some pictures for you to see.So that's the latest from here--hope you are all doing well. Love you lots, Louise

Friday, January 28, 2011

Great News from the doctor

Yesterday I went to the doctor and went to have another blood sample taken. The doctor's appointment was very positive. We had to wait for a while, and I found myself getting pretty uncomfortable sitting there, but then they called my name. We got to see the whole team that we saw every day in the hospital, so it was nice to see them all again. I am sure they missed seeing me in my lovely blue hospital nightgown! The doctor basically told us that things really looked good. He told me that I looked good--that I had good color...and that I was doing well. He was very positive about the way the surgery went--that there were no cancerous lymph nodes that they found, that there was less scar tissue than they had expected, and there were no more cancer cells. THere could be no better report of what the chemo and radiation had done. He looked at my incisions, and was very pleased with how those were healing. He also told me that I could probably get my feeding tube out in 3 weeks--that is a yay hurrah! We all felt like there could have been no better report to get. We don't know what the future might bring (because we all know that cancer can reoccur), but for now the report couldn't be any better. Isn't that wonderful? I am so blessed--now I just need to keep working on this healing process.

Kelsey and I had a much better experience drawing blood this time. We had an appointment, and had to wait maybe 5 minutes to get in. It was great.

I've had some more visitors, and gotten some beautiful flowers--so I continue to be spoiled. Nancy has been so good to me--and waited on me, hand and foot. Your prayers and thoughts continue to give me strength and help. I love you all, Louise

Wednesday, January 26, 2011

Just hanging around...

Hello to everyone. Today is a pretty normal day--if you call it normal, laying around, eating from the feeding tube, and talking as much as you want. :) Spence's sister, Nancy, and I have a lot of fun, hearing about the details of each other's lives. Today I had to put myself in my room, just so I would get a nap! Marti, another of Spence's sisters, came to visit. It is good to have visitors, and they don't even mind that I entertain them in my pajamas!

I have been trying to sleep on a wedge, but it is pretty uncomfortable, so last night I just slept on my recliner...and did much better. My back gets pretty sore on the wedge, and the recliner just makes it a little more flexible to sleep. I LOVE taking showers.

I still have some pain in my chest and in my back--however, I have mostly been able to get relief from Tylenol, which is far better than the harder stuff they were giving me in the hospital. Nancy is good at giving me little meals several times a day--so I am improving on my eating. She's a great cook, so that helps too!

We walked a little in front of my house yesterday--don't do it still as much as I probably should, but we're working on it. Anyway, that's just a little update--I take life pretty slowly, but I think that's ok. Have a good evening. Love you, Louise

Tuesday, January 25, 2011

Adjusting to home life

I have now been home for 6 days. I didn't ever feel like I was going to come out of the hospital. It seemed like I was doomed to be there forever. Fortunately, that was NOT the case! Sorry I haven't written for a couple of days. Yesterday was a little different than we thought it would be. I had to go to a lab to make sure that the levels are right for my blood. Having the blood clot means I need to be sure that my blood is thin enough, but not too thin. So they needed to do some blood work. We waited 3 hours to finally get in...for a 30-second blood test. It was crazy. Nancy, Spence's sister, kept trying to get some idea of when I would get in. When we first got there, it was going to take 1- 1 1/2 hours, and we felt like we could wait that long...but the time kept stretching out. It was super frustrating. However, we did get to know many of the people there who was also waiting. They cheered when my name was finally called! By the time I got home, it was nearly 1:00, and I was I spent a good part of the rest of the day resting. I get tired so easily!

I am eating some now. Believe me, the food here is a lot more appetizing than the hospital food. In the hospital, it was different colors of jello or pudding--everything was sweet, and they never could be convinced that I didn't drink coffee or matter how many times we told them. :) The last few mornings I have actually had raisin toast--that has been wonderful. In fact, last night Nancy made us meatballs, and I ate a whole one. However, we did find out that I can't eat quite that much yet...I was full and didn't feel so well when I went to bed. It's all a learning process.

Nights have been a challenge. The first couple went pretty well, but now I need to change positions--get off the wedge I'm sleeping on, and sleep for a while on our recliner. The change of position really seems to help. I am still having some pain in my chest, but usually Tylenol can help relieve that. (I would much rather do that than go to "La La Land" with a bunch of heavier pain medications)

Spence is back to work, but still worries about me from there. It is good for him to get some of his work done--we're working towards normal. We're not there yet, but hopefully we'll improve each day. Thanks for your love and support, Louise

Saturday, January 22, 2011

Happiness is being home...

Hello everyone. I am home from the hospital...and that is a great feeling. I wish I could do a little more--I know I will improve, but right now it is all I can do to walk from my room to our family room. However, my family keeps cheering me on, like I'm running a marathon...mabye in my own little way, I am!

Wow--what can i say? You have all been so loyal and caring through our hospital experience. I can't thank you enough for waiting until late at night to read the latest posts from Spence. You not only read them, but commented so often on them--that means so much. Spence would keep me daily informed on what each person said, and that was so touching to me. Didn't Spence do great on the blog? He is so good at explaining things, and he always adds a little bit of his crazy humor. He is a good writer--now you'll have to put up with me again. :) It is time for Spence to go back to work, and not be full-time nurse and caregiver. Our daughter, Emily, is here from Utah, just till tomorrow. It is wonderful to have her here, and to be back home with Kelsey and Brady. I am so thankful to have my family around me--wish they all could be here, but I'm just glad for who can be here. Tomorrow Spence's sister, Nancy is coming to help for the week. I am so spoiled.

Thank you for your prayers also as we've gone through this. Spence was pretty positive in all his posts, but I definitely had my down and discouraged times. Knowing that so many people were praying that I could feel peace and comfort was a huge help. You are like a huge family to me--giving love, encouragement and support every step of the way. I will be writing more--but just wanted to say that I do not miss having my vitals taken eveery 4 hours, or being poked and prodded. I may move slow...but thank heavens i am HOME!! Love to all, Louise

Thursday, January 20, 2011

Day 18 ....There Is No Place Like Home!

Louise entered her home about 1:30 today. Everyone was so excited to have her home. Even our dog Sport was all over her. There were no complications today that would keep her in the hospital. Her white blood count was down to the normal levels. The doctor thought that she had probably walked too much the day before and then had had so little sleep because of the Mexican party going on in the bed next to hers to all hours of the night. Otherwise she probably could have easily gone home the day before. But she is doing so well. She had to lay down and catch her breath in the hospital before she left because putting clothes on herself for the first time in 18 days was a much bigger job than she thought. The doctor was very pleased with her progress and his prognosis was very good!

Emily flew in from Utah last night to take care of her for the next 4 days. She and I brought her home today and I finally could go back to work and try to start my recovery from under a lot of back-up work. My company has been so patient and supportive through this.

So thus ends a big chapter in Louise's road to recovery!!


Wednesday, January 19, 2011

Day 17: An easy quiet day still in the hospital

I posted an early blog today at 3 pm to let everyone know that we need to wait another day to hopefully get released. Apparently the blog that I posted didn't allow comments. So I will give a short update in this second blog.

Even though her white blood cell count was very elevated this morning, I don't think that there is anything really wrong other then the fact that she has been ripped apart a few times and this poor body is trying to repair many hot spots. Of course, I am no doctor and don't know a thing but I thought I would make an educated guess. She showed no signs of anything serious going on. She never had a fever. Her vital signs were great all day and she didn't really feel achy or otherwise sick. We lounged in her new private room with the door closed all day so it was very peaceful. I would be surprised if they don't let her go home tomorrow. They will do the blood test early, so we should know early if she can go. Louise was very patient with the extra day. We will let you know tomorrow what the new verdict is.

Thanks for your attention.


Quick update. Oops didn't go home today

Wouldn't you know it. When we are all geared up to go home, they change our plans again. Last night, in the middle of the night, Louise had chills and hot flashes for a while. Early this morning they did a routine blood test and found that her white blood count had gone up significantly. They didn't want to send her home with an infection, especially one that was in the lungs. They decided they wanted to monitor her for at least another day to see if it was anything. They are not putting her on antibiotics for now. They said it could just be the body further healing. She has not had a temperature through the night or through 3 pm today.

She did get a private room out of it. Her roommate was a hispanic lady who didn't speak English. They had a party by the next bed and kept her awake until 11:30. Once Louise complained they kicked the party out and promised Louise a new private room today (which we are enjoying now).

Obviously we were disappointed that this happened but she sure didn't want to take an infection home and maybe have to return. So we are okay with this little setback. But as for me, if this goes on much longer I'm going to be on the rolls of the unemployed. I still have not gone back to work in the month of January.

From the homeless and unemployed!

Tuesday, January 18, 2011

Day 16: Homeward Bound

Tomorrow she comes home! Last night I truthfully thought she was not ready to come home yet. Monday she had spent most of the day in pain or out cold because of the narcotics they gave her to fight the pain. Louise is so sensitive to drugs that I usually tell anesthesiologists to make aspirin the general anesthetic when they need to knock her out. Yesterday she had no energy. Even getting out of bed was a real strain. So as I left her last night I went to the nurse and almost demanded that she not be given the narcotic they had been giving her if she had pain. Give her Tylenol. When I arrived this morning she was a changed person. She felt so much better. She had little pain and had not been given any pain medicine overnight. She could roll out of bed on her own and use the bathroom without help. She was ready to walk. Five times we took walks around every pod on the 7th floor. She had energy and she was a happier person. She even doubled the height on her spirometer. That gave her so much confidence.

So then at about 1 pm, Dr. Perry comes in and tells her she is cleared to go home tomorrow (Wednesday). He was very pleased with her progress. Louise was very excited. Last night she really didn't feel like she was ever going to be well enough to get out. We both feel she is now. Not that it will be easy being home without a call button and a shot of pain killer with just push of a button. But the comforts of your own soft bed and your own pajamas that don't have tubes coming out of every opening is so exciting. I'm home now trying to arrange for alarms to go off every 10 minutes and I'm training the kids how to wake her up every half hour to take her temperature and draw blood. We don't want her to get too comfortable all at once and feel too strange in a dark room all night with no noise.

We met with the dietitian today and set up the feeding regime. She will remain on the same feeding pump that she was on before the surgery. She can pretty much get most of her daily nourishment needs from the pump overnight. Then as she is allowed to eat more as time goes on, we will cut the amount of feeding nourishment she gets. Right now she will stay on soft foods until the doctor is sure that solid foods won't hurt the connecting tissues in her neck. We don't know how long that will be. She also might have to take home an oxygen tank for a little while.

So this was the best day she has had in the hospital, not only for getting the ticket to go home, but also to finally feel better and be more mobile. We will let you know how home feels to her tomorrow. Thanks for caring!


Monday, January 17, 2011

Day 15: ICU C Ya

Greetings to all of the followers of Louise's journey to recovery. Today is the 3rd Monday in this hospital. Her operation was two weeks ago. In our 36 years of marriage, this is the longest consecutive time she has stayed anywhere besides our two homes. Its a good reason to call it a home away from home. So her room assignment changed from the penthouse ICU to the seventh floor in a semi-private room. They asked her if she wanted to make the transition by wheel chair or walk. She chose to walk. Wow, that was the longest walk she has had since she walked into the OR two weeks ago. Before she left, they removed three more drainage tubes and took half of her staples out. She also has no monitors hooked up to her. All she has is an oxygen tube in her nose and the feeding tube connected to her intestine.

So, with all these transitions and with very few tubes to get in her way in and out of bed, you would think that she would have begged to run in this marathon which ran past her hospital window yesterday. Not so! She is still in a marathon recovery stage. Except for a few wonderful visitors that she had today, she basically slept the whole day and evening. She didn't have much energy or appetite to eat anything all day. She did have several doses of pain killers because she did have pain. The pain is still in the scratched chest and where the big hoses used to be. I think this particular pain killer that she had all day makes her very sleepy. Today's naps were longer and deeper than in past days which I think is good for her.

Nobody has said a word about release date so I can't bring you up to date on that. It is probably is at least Wednesday. My 93-year old Uncle Bob, one of the former chiefs of staff here in this hospital, gives her the message to not leave the hospital too soon. She worried today if she could make it at home yet. So maybe it is good to slow down a little and make sure she is ready to get out. She has had so much going on in this body. Another few days might be a real blessing.

So that is the 15th day in the life of Louise in the hospital. Thanks for your wonderful well wishes and comments.


Sunday, January 16, 2011

Day 14: Hurting Hoses are History!!

Louise lost 4 tubes but, most importantly, the last two hurting hoses were removed. Those chest tubes are what have caused her the most pain in the hospital. You would think it would be her two big incisions or the new connection of her stomach and esophagus. No, it was mostly these big chest tubes. They were probably 1/2 to 3/4 inch in diameter and were put in between her ribs all the way to the middle of her back on both sides. They have been there for 14 days. Today the last two on her right side were taken out. She also lost the epidural in her back and her catheter. It will help her so much not to have that pain. But it also means that her lungs and chest cavity are working the way they should and there are no air pockets left in her chest. It also means the fluids in the chest can be easily absorbed by her body. That marks a ticket for her release soon.

I wish I could say that she was without pain, but I can't. I think her braised chest is still pretty painful. That pain is supposed to go away soon. But she still has to get pain medication and it still played tricks on her conscious mind. She can fall in and out of sleep in 2 minutes and have something silly to say each time she wakes up. But she laughs about it too because she knows she is daydreaming. She had a very good afternoon and even got a visit from my parents. That was real fun for her. She walked 3 laps around the pod and it was so amazing to see how much faster they could get her ready without all the tubes. She still has 3 drainage J-tubes on her neck and abdomen, but they are small and so are the containers they are attached to. They won't come out until she leaves the hospital. She also has a feeding tube that will stay with her after the hospital until she can get enough oral nourishment. They also will need to take out the thousands of staples she has all over her body before she leaves. Right now she looks like she has several long zippers.

As you can tell I am anxious to see her released from the hospital. I think she is getting close even though she is in ICU still. She really qualifies to be out of ICU at this point, but I think this hospital has open beds in ICU and not in the other rooms. I am guessing, if nothing else goes wrong, that she could be released from the hospital on Tuesday or Wednesday. They haven't told us that but that is my guess.

I apologize for rambling and I know my grammar is atrocious, but you'll have to decipher what you can from this since I'm in a hurry to finish and go to bed.

Good night to you late readers who comment at all hours of the morning. You need to go to bed earlier also.


Saturday, January 15, 2011

Day 13: Less Drama, The Light In Her Eyes Returns

Phew!! I was ready for a less eventful day and more sparkle in her eyes to return. When I arrived upon the scene this morning, Louise was already sitting up in her chair. I could tell that she was no longer heavily drugged, but she was kind of in the "hangover" stage. She still had some pain in her upper chest and hadn't been able to eat anything for breakfast. Her heart rate was at 128 just sitting there. I was concerned and let the nurse know that she needed to do something to make her feel better and get the heart rate down. Sometimes the nurses need to worry more. They can take lessons from me because I have the reputation for knowing how to worry. Anyway, she went and called the doctor who suggested that Louise was probably dehydrated. So she brought one bag of saline, hooked it up and within 20 minutes her heart rate went down to about 100 and she started feeling a lot better. As the morning wore on, you could really see things changing. The pain was less and the old Louise was coming back. Both Kelsey and I really saw the light come on in her smiley eyes. What a relief.

The big bonus was that they came in and removed the left side garden hose like they said they might. That leads me to think that tomorrow they will remove the other two right side tubes and finally take out the main source of pain. Most of the rest of her pain has been caused by her upper chest abrasion which is not controlled by the lower epidural. That pain is supposed to go away soon also.

This evening, before she went to bed (for the first time today) she took two laps around the pod. She did well with that. I think she will do so much more of the walking in the days to come. She needs to find her strength back because she has been pretty weak. She also ate her soft foods very well both lunch and dinner. I am so encouraged by some of the things she can now eat. They won't let her eat real solids yet, but what she is eating, like thick pudding and thick soup is more than she could ever eat before this surgery. What a blessing to see her eat again!!

So, we are so thankful that prayers have been answered and that she really turned the corner today. Thanks again for your concern. Sorry Peggy that I was late with my post!


Friday, January 14, 2011

Day 12: In Pain and LaLaLand

Before I begin this next episode I want to thank so many of you for your concern and love for Louise and for me. Your comments, emails, phone calls, etc. have been so appreciated over all of these days. Most of them have been read to Louise also. I am amazed at how many people that I had no idea were following this, have surfaced in comments and emails. When Louise becomes Louise again, she will want to write each of you a thank you note and put each of your well wishes in a scrapbook. That is how she is!

But today, Louise was not with us very much. She was in the dream world and she kept waking up to doctors and nurses and telling them strange things about her dreams. One poor pain doctor was a little shocked when she told him that he probably would never drive with her again because she was so tipsy. I know you have never heard this about Louise before, but she is right now high on drugs.

Last night she came out of surgery and they had not turned on the epidural medicine and they had not given her pain killers. That half hour of pain for her was the worst. She had me put on soothing music and I caressed her arms and hands until she finally fell into deep sleep. She said she slept pretty well last night. This morning, though, she was in a lot of pain for most of the morning. They really tried to keep her out of pain but not drug her up too much because they could see how loopy she was. Finally about 2 pm the pain subsided somewhat and her heart stopped racing. I think she finally was relaxing. But she still couldn't ever stop from going to sleep. It was almost scary. She kept asking what day it was and whether it was day or night. She had trouble talking clearly and eating by herself. I'm sure it was the drugs. The one drug they gave her that knocked her out was called fentanyl which is supposed to be 4 times stronger than morphine.

Even with her being so drugged, they still made her get out of bed and sit in the chair. She sat in the chair for close to 3 hours. The surgeon did not want her to just lay in her bed all day. He worried about lung infections. She did develop a fever of about 101.5. The surgeon felt that it was probably due to last night's surgery where they scrape her chest and then throw inflammatory medicine on it to make it sticky. Talk about burning. It hurts to even think about.

Even though it was one of Louise's toughest days, there was some good news. The surgery last night accomplished everything that it was supposed to. This morning's x-ray revealed that the leak in her lung was gone and the lung had inflated completely and everything looked very positive. the surgeon even thought that she might get the left tube out tomorrow and maybe the right tubes out as early as Sunday. The epidural would come out at that time too. She will remain in ICu at least one, maybe two more days. So that seems to be the story for today. thanks again for your concern for her. We all appreciate it so much. She is worth it!!


Thursday, January 13, 2011

Day 11 Second Surgery Successful

I did one of these computer things where I wrote this blog for the day and then lost it before I could post. So I will try again and maybe include less detail.

Last night Louise was able to have the transfusion without any reaction and it fixed her blood so that it would coagulate. Today's surgery was scheduled for 5 pm. So it seemed like a long day just waiting for the time. Louise was able to sleep for most of the day. She was in way less pain but she also never got out of bed.

She went to surgery on time and it took about two hours. Dr. Standerfer was pleased with how well it went. It went as he thought it would with no complications. He found that both lungs had adhesions from her first surgery. The adhesions had kept the lungs from moving freely and expanding and contracting as they should. What I don't get is that he created tissue in the upper chest wall that would make the right lung adhere to the chest wall and seal the leak. So he eliminated adhesions and created adhesions and made the lungs work like they should. Go consult with your local thoracic surgeon if you want to understand it because I sure don't. He also put an upper and lower tube in her right side and just an upper tube in her left side. Yes these are the same size as the last ones but he also put an epidural in her back that should take most of the pain away from the tubes. We will see. He didn't think it would take the scratched chest pain away so we hope that doesn't hurt too much. She did not have to have a ventilator put in like they said she might. thank goodness. She is breathing well on her own. the doctor even showed me several pictures that he took with the scope. He used the pictures to explain what he did. They were beautiful full colored pictures of her lungs. But I don't think we will use them on our Christmas card next year. I didn't understand them very well either. Anyway, the doctor was very pleased with the surgery and said it was really the right time to do it.

When they finally brought Louise back into her ICU room, she was in so much pain. they had not started the epidural in OR. they waited until she got situated in her room first. that was a big mistake. It took at least 20 minutes of starting the medicine and then another shot of benedryl before she actually fell asleep. Until then she had me put music on and I rubbed her arm to try to ease the pain. It was the most pain she has been in since we came into the hospital. So I don't know how the night will go and how she will feel in the morning but right now she is sound asleep and all of her vital stats are real good. I better close now because it is late and I need to go home and sleep it off myself. Thanks for your interest.


Day 10 Continued

Please read the prior post, "Day 10 Tough Day, Longer Stay" before reading this to keep the chronology of the ongoing saga.

They finally got the lab reports done at 11:15 last night. They told me at that time that the x-ray, the EKG and the blood work indicated that there was no heart trauma from the transfusion or from any other source and they felt confident enough to give her the new transfusion. So, at that point in time, they thawed out a new plasma bag and gave her the transfusion at 2 am. She had no problems with that transfusion and seemed to sleep pretty soundly through the night (as well as you can anyway in a hospital room). It is now 6:30 am and they are waiting for lab reports to determine if her blood clotting is right or if they will need to give her 2 more units of plasma so that she may safely be operated on at 5 pm.

Our prayer today is that she can have a less-suspenseful day and a perfect operation that fixes her lungs and takes the pressure off her heart.


Wednesday, January 12, 2011

Day 10 Tough Day, Longer Stay

This has been a hard day and somewhat tense. When I walked in this morning I could tell right off that things were not right. Louise was feeling pretty bad. She was short of breath and sweating pretty bad from her head but not from a fever. Her heart rate was 120 just sitting in a chair. It didn't take me long to let the nurse know that she had problems and something needs to be done now. The nurse was really proactive and agreed with me that something needed to be done. She called Dr. Perry, the original surgeon and a pulmonary doctor on duty. Before long they were taking more x-rays and doing some other tests. Louise was pretty scared also. She wondered if she was having a heart attack. They gave her anxiety medicine as well as several pain killers.

Dr. Perry recognized what the problem probably was and called in Dr. Standerfer, who is a cardiac thoracic surgeon. He came in and explained to us that Louise had a small leak from her right lung, probably caused by surgery. They had been trying for days to remove the air between her upper lung and the chest cavity and they had been using the chest tubes to suck it out. Every time they did, the air would come back and the doctor said that the air could only come back from the lung. He also said that the chest tubes have only been taking the lower 2/3 of the fluid out and they need to move the chest tubes to the upper lobes of the lungs. So this doctor recommended that she have surgery to put the tubes in the upper chest and (this is laymen terms) he would fix the leak in the lung(s) by scraping the chest wall so that it would adhere to the lungs. Once the lungs adhere to the chest wall, without an airpocket in between, the leak in the lungs will be patched by the adherence to the chest wall. That probably doesn't make any sense to you, but that is how I interpreted his explanation. The procedure is called thoracoscopy and pleurodesis. This surgeon said he had performed this surgery about 300 times and had success in almost every one of them. It is arthroscopic so it is not very invasive. He wanted to do an epidural on her back which would deal with her pain while she wore these new tubes and healed from the scraping of the chest cavity. Both would be very painful. After the surgery she would need to have the tubes in her at least 3-4 days and then they would spend another day making sure the lungs would stay inflated and the problem was solved.

The doctor was planning this 2 1/2 hour surgery for this evening until he found out Louise was on blood thinners. He can't operate if she has no clotting ability. So the next problem was to reverse the blood thinners by giving her a transfusion of plasma and Vitamin K. So when they were about to give her the transfusion they told us in very rare cases she could could have a reaction to the plasma and that if it happened it would probably happen in the first 15 minutes. Well, wouldn't you know, after they had just started the transfusion she got a very sharp pain in her right chest area. It was scary. They stopped the transfusion and called the doctors. They are now doing blood tests and chest x-rays and an EKG to see if the transfusion was the source of the pain or if something else was the source. If they decide that it was not the transfusion, they will start the transfusion again tonight. We will hold our breath if they start it again. If the transfusion works and her blood count is right, they will operate tomorrow evening at 5 pm. If they choose not to try a transfusion again, she will have to wait 7 days until the Coumadin is out of her system before they can operate. They don't feel like she will correct the lung problem without the operation so we are hoping she can have the transfusion tonight and that she won't have the severe pain she did last time. It is 10 pm right now and we have not gotten the lab results yet. Now they have to throw out the first plasma because it has been out too long. So they will have to thaw out the second one which will take at least another hour. This transfusion will be the early hours of the morning at this pace.

So this is the drama of the day. Louise slept from the drugs most of the day. She suffered quite a bit of pain this evening until now. We are sure hoping for success tonight and a successful operation tomorrow evening. I will sign off tonight and maybe update you on the transfusion situation in the morning.

Good-bye for now.

Tuesday, January 11, 2011

Day 9 Not So Fine

This was one of those step backwards days. We had hoped to be without tubes and monitors and making advances to being released. Instead they found through the early morning x-ray that Louise has a partially collapsed lung on her right side caused by the continual build-up of fluid in her chest cavity. They not only left all of the tubes in but they put the right one (that hurts so much) on suction again to try to drain her chest faster. She has been trying to suck on this gizmo that helps exercise her lungs but as hard as she tries she can't get it too far up. Her lung capacity is going down rather than up. It affected her when she tried to stand or walk. She only made one lap because the therapist noted that her pulse was up to 145 as she was walking. Her heart is working too hard. So she really didn't get up any more during the day. She had to wear the oxygen in her nose most of the day. She spent most of the afternoon in the chair which is about all she could do.

And yes we are still in the intensive care unit. I called it the intensive-not-there unit. I couldn't find any nurses all day so I was in charge. I did things there I never thought I would get to do. I know where every piece of linen is, how to fix every alarm and where all the be pans are. I won't go into all of my chores for the day but suffice it to say that I'm going to offset my large hospital bill from Good Sam with one of my own that I submit back to them. Mary Lee Nelson, our ward Mayo nurse, would be so proud of my nursing skills.

Louise did eat more today. She loved their thick soup and ate her whole bowl. She ate many other soft foods and is certainly making progress in that area. Who knows what will happen tomorrow but we are praying she can move forward again and her lungs will improve. That's the latest scene from General Hospital. Signing off.


Monday, January 10, 2011

Day 8 Still living in the penthouse

We can't believe that we are still here in the ICU. The doctor was very impressed with all of Louise's stats and ordered a change of venue this morning. However, in this huge hospital they couldn't find one bed open so they left us in the penthouse. Louise gets wonderful service here even though she should be in the semi-private Motel 6 wing of the hospital. I'm pretty sure that tomorrow she will get into her new digs.

She had a pretty good day today. Unfortunately she couldn't shed any of her tubes or hoses. She seems to be a human fountain still. This would be too easy if she didn't have the pain tubes. She has had less pain today but it doesn't go away.

She also graduated today from the clear liquid diet to a soft food diet. The speech therapist watched and felt her swallow, asked her questions and said she is doing great. She ate some yogurt, pudding, thicker soup, etc. She never ate too much of anything though. Here she has been begging for food for so long and when they finally gave it to her, she only picks at it. What we don't realize sometimes is that her stomach is a tube now and it doesn't hold very much. My brother-in-law, Alan had stomach bypass surgery and that has been his blessing also. The stomach fills up quickly, and you don't have any need to overeat. But I'm sure her appetite will increase with time. She also has a feeding tube feeding her 24/7. Tonight the nurse came in and said that her Coumadin would now be given to her in a pill. She said, "Oh I don't take pills." The nurse said that she thought she could. So she did and it went down fine. I threw my arms up over my head and said YESS!! You have to understand that Louise has been throwing up attempted pills for 5 months. So I have been crushing up her six pills a day (sometimes twice a day) and then inserting them into her feeding tube. I, almost exclusively, have done it every day for 5 months. So now you know why I was so excited. My pharmacy days are coming to a close. Each day is showing us that she will be eating the same foods as the rest of us very soon. No more throwing up several times a day because she tried to eat something that might have been a little bit more than a liquid. To us, this is a big thrill.

Louise has done a lot of chair time and some walking but a lot more getting up and down because she needs to use the bathroom so much. That can be like a bug trying to get out of a spider-web with the many wires and tubes that are all over her. I'm convinced that she would be progressing a lot faster if she didn't have to maneuver through the web each times she wants to get up or lay down. But the doctors are looking at possibly Wednesday or Thursday for release and I will be glad to be the one to pull everything off of her and let her go home untethered.

Well I must close now. Thanks to all of you for caring enough to follow these boring medical reports.


Sunday, January 9, 2011

Day 7 Sunday, A Day of Rest

So many things happened in the last two days, but today, everything slowed down quite a bit. The doctors didn't really order many changes to take place. The many drainage tubes are still in. She seems to be constantly draining fluids. The right side chest drainage tube is the worst. It seems to cause her terrible pain especially when she is getting into bed. For some reason they want to keep her in ICU longer. I also don't think she will be ready to be released next Wednesday. Things are progressing but slower than we thought.

She had a very difficult hour this afternoon. She had pain in her chest (from the tube I think) and her back. They gave her lots of pain medication but for an hour or so she was really having a difficult time. I didn't know what to do but let it run its course. And then it finally passed and she was able to get up and sit in the chair for 3 hours this afternoon. She did one hour in the chair this morning and many laps of walking. She was so comfortable this afternoon. I hated to see her get back in bed. She is back in bed and suffering some again now at 9 pm. It is funny that the pain she has had in the last two days is related to the chest tubes (garden hoses) and her back. Both aren't really related to the actual surgery itself. I ache for her so much at these times. I guess it is part of the whole package.

Louise said today she is so much happier that it is Sunday, the 9th as opposed to Sunday, the 2nd. She was very nervous for her operation on Monday and now she has a whole week of healing behind her. So time does help and we can't wait for another week to pass so she can feel so much better.

I pray that she may have a restful night tonight and get over some of this pain.

Until tomorrow, thanks for all of your concern!


Saturday, January 8, 2011

Day 6 Eat Drink and be Merry!

As I walked in to Louise's room this morning I saw two things I had not seen in a week's time. First I saw a big smile on her pretty face and second I saw her drinking water through a straw. She was so happy. I first thought she had found some naive nurse that she convinced that she could have water and she got it. But then she convinced me that the speech pathologist cleared her to drink. They started her on ice chips but let her graduate to water. I think she wanted to drink a gallon but she did take it slow. Later she had a sprite and drank it all very quickly. You would think that she had crawled across the Sahara for 5 days looking for water, the way she guzzled.

Last night she discovered that the little sponge sticks drenched in water to moisten her mouth could hold quite a bit of water. So she had me running back and forth to the sink to get more water for her lollipop sponge so she could have water. Desperate people do funny things sometimes.

Also last night they started her on her feeding tube nourishment feeding. This feeding tube is connected directly to her intestines right below her stomach. She has now been on it for 24 hours with it dripping 30 cc's of nourishment into her system. They have monitored it and I think her intestines and bowels are responding and waking up again. So that is also very encouraging.

Then, this evening they brought her a 5 course meal. She ate clear broth, green Relief Society jello, grape juice, grape icey slush and water (she turned down the tea). It was so good to see her eating everything. She couldn't eat as big of bites of jello before her surgery. It wouldn't go down. This did!! Half of the jello made it to the towel under her tray because she is so out of practice in shoveling food to her mouth, that she missed half the time. Anyway, I really think her new esopha/stomach is going to let her eat everything. She did have some coughing attacks while she drank and ate today but I really do think she is learning to swallow all over again with her new plumbing. Her eating and drinking today certainly made her merry. I can't tell you how excited she was, as well as all of the rest of us.

Today she slept the least that she has. She had more determination to sit in the chair and walk. Those are the keys to faster recovery. She sat for two different sessions in a chair for over an hour each time. She walked four laps and then two laps. She walked fast. No shuffles. She felt some real exhaustion from so much activity. I have to say that today she probably felt the most pain that she has since she has been here. The two big tubes in her side, to drain her chest are still in and are still draining a lot of liquid. They are giving her a lot of pain. Also her back seems to never be comfortable. So she has had quite a bit of pain killers. I think when the surgeon changed all of her plumbing around, he forgot to cap off certain pipes in her chest area. It seems the IV liquid goes from one bag on the pole to another container on the floor via Louise's body. They keep promising to take these drains out soon. She still has several other belly drains that are smaller and don't hurt but are still draining fluids. The only tube she lost today was the oxygen tube to her nose. Her breathing continues to improve.

Some of you have wondered how long she will be in the hospital. Before surgery they told us about 10 days. That would make it Wednesday of next week. I can't tell you if that will be the date of release or not. She hasn't even been released from ICU yet. But I think that will be soon. If she is released next Wednesday, our daughter Emily is flying in from Utah to be her home nurse from Thursday through Sunday. My sister Nancy is coming from California to take care of her from Monday, Jan. 18th through Friday. The following week my sister Marti, who lives in Gilbert will take care of her mornings and Kelsey afternoons. We are hoping that will get us through January at the Lippizan hospital with the best care. What about me you might ask? I think I will be on a cruise somewhere in the Bahamas. This hospital work I'm doing has convinced me that my post retirement profession will not be a nurse. I'm tired.

With that, I will close and try to go home and get a little sleep.

Good night,


Friday, January 7, 2011

Day 5 No leaks, no drinks, no nose tube, one blod clot and one big miracle

Day 5 we are still in the ICU unit and I have no idea when we are leaving it at this point in time. Today we had many events happen and one bit of miracle news that I will save to the end. I guess I will go in chronological order. Early this morning Louise had her barium test which disclosed that there did not appear to be any leaks in her new esopha/stomach connection. That meant that she was sort of cleared to start drinking water. Dr. Perry told her that she could have her nose tube taken out and that she could drink after the speech therapist came in to see how she was swallowing. He said that after this type of surgery, patients lose their ability to swallow and they wanted to make sure she could. They did give her a little water after the barium and she loved it. We have been begging all day for the speech therapist but no one showed so she has to wait till tomorrow to start drinking. Poor Louise is still begging for a drink from anyone. She is mumbling right now that Sharie would give her a drink if she were here.

She did get her nose tube taken out. That tube was such a bother. It went all the way down to her stomach and was there to remove bile from her stomach. Her voice went down an octave after they took it out. She is sounding more and more like the old Louise.

Then comes the bad news for the day. they were still concerned how swollen her left arm and hand are and they ordered another ultra sound. If you remember that two days ago they found no blood clots. Today, however they did find one right around her picc line that she has had in her arm since August 5th. That line has been used for chemo, hydration and blood draws for all those months. they have been using it for IV.s for this operation also. So they have taken that picc line out and have immediately put her on blood thinners as well as coumadin. She will need to stay on the coumadin for at least 3 months. They are concerned about it because they don't want it breaking lose and going to the lungs. They feel like they have caught it and can watch it while she is in the hospital and she should be okay. I wondered if the blood thinners would hinder the healing and clotting of the blood where the blood should be clotting around wounds. The doctor said she is 5 days into the healing and so there is no problem with that.

So then, this afternoon, she got out of bed easier than yesterday and did a marathon walk around the ICU pod not once but three times. She walked well and was in no pain as she did it. It gave her a lot of confidence. Then she sat in a chair without her legs up for over an hour. That was great progress. Her breathing is much better. Her blood pressure in not having a good day though. It is too high.

And now the miracle news for the day. This is the result of Priesthood blessings, great faith, all of your fasting and all of the prayers. We got the results of the pathology report on all tissue taken out of Louise. That includes the old esophagus, the 1/3 stomach and all of the lymph nodes that were taken out. They tested every area of all tissue and didn't find one cancer cell in any of it. We immediately asked them why in her endoscopy before her operation they had dusted the area and found some cancer cells. The doctor says that she doesn't know about that but she did know that there were none found at the time of surgery. Maybe they died in between. Or maybe the first endoscopy path test was wrong. And I ask myself, maybe that last test cinched the fact that that we were going to have this surgery. I asked the doctor. Were we right to have this surgery? She said absolutely. Like Dr. Lewkowitz said, this insures that the cancer would never come back from the esophagus. That is the main thing. We are trying to insure that cancer never comes back. So we are so thrilled to get this news. The doctor is now a big believer in the chemo/radiation treatment before surgery. Both doctors were so impressed with how it eliminated an inch and a half tumor and affected lymph node to no cancer anywhere. We know also, that there was another great power involved in this miracle, that power from God!

So that's the mostly good news from ICU for now. Thanks for your continued thoughts and prayers. Can we ask for no visitors still until she at least leaves the ICU. It is hard for her to do much socializing still.

Thanks again, Spence

Thursday, January 6, 2011

Day 4 Less eventful, more stability, a day of rest

The day was a lot less eventful and that is good. For Louise it was a rough night. She hit the call button for the nurse about 30 times at 3 am. Why, the heck, didn't she come? Finally she came in. Oops Louise had hit the wrong button 30 times. She hit the pain medication button. So she was so overdosed on pain medication that they had to give her a shot to reverse the narcotic in her. Too much medicine had caused her lungs to slow way down and she was breathing very shallow. They called in the respiratory doctors who put a mask on her and told her they might have to put the respirator back on. They didn't but she was so scared that she started coughing and felt like she was going to throw up. It was a real long night for her.

However, by morning she was fine. She was not drugged at all and seemed to be feeling well. She did sleep most of the morning. Because she has had these respiratory problems and fluid build-up in her chest, the doctor has stayed very conservative with her. He kind of gave her another day to improve before he starts doing more tests. She has gone another day without getting any nourishment into her intestinal feeding tube. Her intestines and bowels are still "asleep" and they want to wait another day before they try to put anything in them. She also has not had anything go down her throat. They fear that it might leak and the more days of healing that go by before they try anything, the less likely there would be a leak and infection. They won't even let her have ice chips. She is still asking everyone to sneak her a drink.

They have told us that tomorrow she will be tested for swallowing. They will let her drink a little barium and they will watch it through the x-rays to see if it leaks. So her first drink is barium. Yuk!!

They had the physical therapist come to help Louise get out of bed to sit in the chair for longer than yesterday. After they spent the 15 minutes disconnecting, reconnecting and changing all containers to a little cart so she could walk 2 feet to the chair, they decided she was doing so well that they took her on a walk around the whole ICU pod. She did great and was not in much pain as she walked. it did wear her out but we were all very encouraged with the first walk. She then set in a chair for over an hour which they say is also very good for the lungs and heart. As she sat in the chair, Kelsey and Brady had her watch her favorite DVD, episode of I Love Lucy. I even saw her crack a smile once in a while. She was very happy and ready to jump (or rather gently flop) into bed thereafter.

So as I said at first it was a less eventful and hopefully healing day. Louise was a lot more in tune today. Thanks to all of you for your comments and emails. I have read them to her and she has been so happy to hear from you all. I'll be back with another update tomorrow.

Gute Nacht!

Wednesday, January 5, 2011

Day 3 2 Steps Forward, 1 Step Back

Day 3 was supposed to be a tough day according to the doctor before the operation. I expected it to be one where Louise would be in a lot of pain. I hate to answer for her, but it seemed like her pain was pretty much controlled. However, the pain medication that she had in her made her so sleepy and quite loopy today. It was hard to communicate much with her.

She had an x-ray this morning which showed that she had a build-up of fluid in her left chest area outside of the lung. She had a drain on the right side which had kept the fluid drained on the right side. So, instead of taking the drain tube out of her right side, they put an additional drain tube on the left side. They really aren't too concerned with the fluid build-up, but it did slow down her ability to breathe deeper. They also had to give her morphine and other pain killers as they put in the new tube. Well you can imagine what that additional medicine did to her state of mind.

The other problem today was the swelling of her left arm and hand. The doctors were worried about it and they called in an ultra-sound to be performed on her shoulder and arm. The radiologist who performed the procedure was very concerned about something and went over and over it for at least 1/2 hour. She didn't say anything and she had me very worried. I knew she was looking for blood clots and from what I could tell, she had found some(I'm so good at reading those kinds of things..not). Then she said that she thought it was probably a nerve bundle but she needed to call in a second opinion. The more experienced radiologist confirmed that it was not blood clots and I was so relieved. We don't need blood clots right now. We still don't know where this swelling has come from but it is probably just part of this trauma of surgery that she is trying to heal from.

They did get her up to sit in a chair for over an hour which is the first step to walking. Hopefully tomorrow she can walk a little. They still haven't let her drink any water (for 3 days). She constantly asks for it. She has also had no nourishment for 3 days except for IV sugar water. They are so concerned that the connection from the stomach to the esophagus will leak, and cause all kinds of problems. So they try to avoid any swallowing for as long as possible to allow the connection to heal. Tomorrow they plan to put nourishment through the feeding tube that is now in her intestine. She is still in the intensive care unit and you can see why. She probably will be there at least two more days.

So, in summary, it was a day where I don't think she was in too much pain but a day where she had some setbacks with fluid build-up, swelling and some breathing problems. We are looking for a better day tomorrow. Thanks for all of your great comments and responses. I am passing them on to her as much as her sleepy mind can understand. I hope I haven't overwhelmed you with too much detail, but most of you seem interested. So, I will check in again tomorrow.

Good night, Spence

Tuesday, January 4, 2011

Day 2 Good Progress

Greetings from the ICU of Good Samaritan Hospital. Louise has had a good day so far on one of the days that was supposed to be the worst. This morning about 8 am they woke her up. They took her off all sedation with the hope of testing her to make sure she could come off of the respirator. She passed all of the tests even though she had a hard time puffing for cancer (you old timers who have followed the blog from the beginning would understand that). Anyway, they found that her lungs were strong enough to breathe on their own so they took the respirator out about 10 am and she has done fine breathing ever since.

Since she couldn't talk with the respirator in we had no idea if she had any voice at all. One of the problems with this type of surgery is that they often times damage the nerve of the larynx and the patient becomes hoarse or loses her voice. Louise does not talk loudly when she speaks but she sounds like she has her complete voice back and won't even be hoarse. Yay!!

When she had the respirator in we had fun trying to communicate with each other. She tried to say things moving her lips and expected me to understand. I couldn't even see her lips through all of the pipes, let alone try to read them. So she would do feeble hand motions. I would just laugh. So I did all of the talking for a while. I told her how blessed she was, how the surgery only lasted 3 hours and was totally successful. I told her about all of the people of the world who were interested and how we spent the afternoon and evening answering calls and getting the word out. I told her how my parents, sister Marti, George Reeves and later sister Barbara came to be with me and Kelsey and Katie in the waiting room and how our dear neighbor Lea came all the way from Scottsdale to bring us a basket of goodies to eat while we waited. Tears welled up in her eyes when she heard of all of these things and of many more well wishers who called and commented.

After I had her write her questions on paper, we could communicate so much better. Can any of you imagine Louise being speechless? Forget the pain and the other frustrations, not being able to speak was the most difficult.

So then when she finally could speak, Brian, Katie and I had a real fun time talking with her. Being on pain-killer narcotics she said some funny things. She said how glad she was to be on drugs. She kept telling us that she had had surgery and we shouldn't forget that. She asked at least 6 times what day it was and when was Brady going to come visit. Some of her humor was intentional but some was intoxication. We all laughed including her and that was so good to see on a difficult day.

They have actually eliminated several tubes and drains and slowly she will get to the point where she is down to maybe only 5 or 6 that she has to drag around with her when she walks. They are planning to get her up to sit in a chair and maybe walk in another hour.

I watched them change all of her dressings so I could see all of her scars. Yikes again! Her neck wound was not 2 inches, more like 4 inches long. Her abdomen scar seemed like almost 12 inches (from breastbone to past the naval). But they looked very good. I sure can't staple anything that straight. As they have reduced her pain medicine, she has felt pain but not horrible. She received a blessing that her pain would not be unbearable and so far it hasn't been. Just as I write this she is having quite a bit of pain where her chest tube (that looks like a garden hose)is connected. However, I am very encouraged and pleased by her progress today.

To close this today, let me tell you one more very interesting side notes. Debbie might kill me for saying something but I don't care. Louise has a best friend (she is our whole family's best friend). She lives in the Newport Beach area and spends time every year with us at the beach. She also came and stayed with us in September and was the nurse for Louise for a week. You have seen her comments in the blog under Deborah or Debbie. Well a few weeks ago she called to let us know that the doctors had found a 4-inch cancerous tumor on her kidney. She had to have her kidney and the tumor removed by surgery soon. She had her surgery yesterday at the very same time as Louise at the UCLA medical center. They were successful in removing the tumor and the kidney and she seems to be recovering well. What a coincidence for these good friends to have cancer surgery at the exact same time. Good luck Debbie in your recovery. Our prayers are with you!


Monday, January 3, 2011

Surgery is very successful!

Here is our first posting after surgery. Everything went well. We started late because the hospital lost the insurance authorization but the surgery itself only took about 3 hours. Dr. Perry and his team of doctors are so experienced at this surgery, that each one worked on her in a different area. They did everything just like I told you earlier in another blog that they would do. They cut her esophagus off at her lower neckline. They cut about 1/3 of her upper stomach off and eliminated that part of her body. They tested all of her margins and did not find any cancer in the remaining esophagus and stomach. They also took out all surrounding lymph nodes and found no cancer in them. Dr. Perry was impressed with how much good the radiation and chemo had done and how little scarring had occurred. They took the remaining 2/3 of her stomach and attached it to her remaining esophagus and stapled it together. Her new esophagus/stomach will act as both soon.

Dr. Perry and his assistant told me that there were absolutely no complications and everything went as smoothly as possible. Louise is in good shape and her vitals were strong through the whole operation. They have left her in kind of a sorry state right now. I am sitting with her in the intensive care room. She has a respirator in her mouth. They have kept her sedated the whole time so she doesn't even know what you know about what happened. They have lowered the sedation a few times because her blood pressure is too low. Each time she wakes up a little. She opens her eyes and nods or shakes her head to communicate. But she is really out of it. I'm not sure she will remember much right now. They really want to take her off the respirator in the morning and wake her up but they will have to test her then to see if she can breathe on her own by then. She could be on it longer. She has every drain tube and feeding tube that you can even believe coming out of her. She might have to stay in ICU for several days and it would be good for her not to have any visitors until she is out and has some abilities to communicate. I will make many posts to this blog and will keep you as up to date as I can. i will not be leaving her side much for at least a week. She still has a real tough road to endure especially in the next few days. But she is certainly a fighter and she will win this fight also.

Thank you all for your prayers and fasting. The Lord has recognized your faith and has answered all of our prayers. Keep them coming to help her make it through this tough recovery. And as you do, please thank Him for the blessings he has bestowed on Louise and all of her family.

Love, Spence

Saturday, January 1, 2011

Happy New Year!

This is to all my dear friends--happy new year to you all! It is good to have new years and new beginnings...and hopefully, having this surgery right away will get us going on the path we need to go on. Tonight Spence and Brian and Michael, my 2 sons, (we don't believe in that son-in-law stuff!) gave me a blessing. It was very comforting and touching...and gave me some good "food for thought." I was especially grateful that Spence blessed the doctors and my family in that blessing--I know that will give extra help and strength to everyone.

It has been a good day. We are trying to do things (like laundry, ironing and clean up) which will make the next several days go smoother. Emily, our daughter, offered on Thursday to help us put away Christmas--a brilliant idea!! While we were at the hospital yesterday, doing some lab work, the kids took down everything...and by last night, everything was back up in the attic. That was absolutely fantastic!! What a tremendous help that is to us--usually it's my job, and it drags on for weeks after Christmas. :)

I also have a new "do." (even less hair.) My hair is starting to grow, but the little wispy things left from my old hair, were looking kind of say the least. We had a family council and unanimously agreed to let Keri, my daughter-in-law (again, forget the in-law stuff!) cut off all the wispys! She did a great job, and now for the first time in our lives, my hair is shorter than Spence's! Sometime, if I get really brave, I'll show you a picture. :)

So...a new year, 2011. May it be a good one for all of us. May we all have the strength to meet whatever challenges may come our way. May we especially feel and show and express gratitude for all our blessings, large and small. I feel especially tender tonight about my family. We are not perfect, but we love each other, and I am so grateful for the time we've had together. It's been an awesome time!