Sunday, August 31, 2008
A weed is no more than a flower in disguise. - James Russell Lowell (1819-1891)
Tomorrow we are having a Labor Day picnic at Mom & Dad's. I am looking forward to a swim in the pool - I have only gone swimming a couple of times this summer. Butch can rest in the shade in the recliner and watch us swim. I am going to make ham and scalloped potatoes in a few minutes to take over there tomorrow.
Saturday, August 30, 2008
Life is Life - fight for it
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.
By Mother Teresa
I think the above is a wonderful philosophy - we should all live by it. One thing this whole journey has taught me is that the above writing is oh, so true, and we will try to live each day from now on remembering it.
I have been reading our AARP magazine for this month. Ithaca, NY(Alan's town) is listed as # 1 - top towns - for greenest commuters (percentage of people who walk or bike) That is something, if you consider all those hills in Ithaca! Also - top towns - for skinniest (lowest average BMI) - 4th - Melbourne, Florida (Tom Clegg's home now) and 8th place - Sarasota, Bradenton, Venice (Mom & Dad).
I got my hair cut today - it needed it badly - it grew so fast in the last two months. I stopped on the way home and picked up bacon - to make BLT's tonight - that is the choice that Butch made for supper using those home grown tomatoes I told you about, and he specifically asked for iceberg lettuce. We have an ongoing disagreement about iceberg lettuce - it has NO nutritional value, and I don't think it tastes nearly as good a loose leaf lettuce, but - it is what he likes, so - I guess if he eats it - iceberg lettuce it is. I am going to make corn chowder, also - have some fresh corn left over from yesterday - we had corn on the cob.When we were at the Doctor yesterday, Butch weighed in at 149 pounds. That is the scale he weighed 166 pounds on when we left. I don't know which scale is correct - UPMC scale said 160, Select Specialty said 160, ours here at home said 155! As of today , on ours, today - he weighs 145 pounds. He is bony, no meat - it is a fight to get him to eat. We will have to fatten him up. Sharan sent us some stuff today that is a calorie booster - benecal, for one thing - it is a powder (supposedly tasteless) that you add to any drink - add 350 calories! Also drinks called "arginaid extra" - for wounds - it says "arginine-intensive drink with specialized nutrients to provide support during wound healing" - 250 calories (wildberry flavor), and another cherry flavored drink mix that is "arginine-intensive". Arginine is an amino acid that - among other things - improves immune function and helps with the healing of wounds. In fact, the book that we follow very closely - "Beating Cancer with Nutrition" - states that formulas that combine arginine with fish oils and RNA not only accomplish these two goals, but in addition is thought to reduce tumor Burden. It sounds wonderful - We'll see if he can tolerate it. Thanks so much, Sharan, for sending that and - as important - for being a cheer leader throughout this entire saga.
Butch and I are incredibly blessed in that our family's - both sides - are just filled with exceptionally strong, loving people who have been our support system throughout this journey, and the search for a solution. Sharan, my Brother Alan, and I grew up together way back in the 50's, in a big two family house on Conklin Rd. that was filled with family - Parents, Grandparents , Uncles, etc. We lived through a large part of our childhood together, and have remained very, very close to this day. We have been through a lot together, and have been fortunate to have this close relationship to lean on when life gets tough - as it very often does, unfortunately. We have this "collective memory" that no one else shares with us, as do siblings all over the world, I suppose, and, although our lives have gone in very different paths, we have always had each other. Butch's Sister Carolyn brought over a poem that she wrote for Butch the other day, and it brings tears to my eyes when I read it. It is all about THEIR childhood and growing up together - there were 5 brothers and Sisters, but Carolyn and Butch are much younger than the other 3, so they grew up together. They had that same kind of close relationship that I am talking about. All this, and our wonderful friends - our "extended family" have meant so much to us at this time in our lives.
Speaking of childhoods, I had some sad news this morning. Mom called and told me that Uncle Norm passed away last night. Norm Blewett, that is. Aunt Rick and Uncle Norm are Mom's oldest friends - Mom and Aunt Rick have been friends since grammar school, and Mom dated Uncle Norm 1st! They are wonderful people, and have always been such a comforting presence in our lives. They had 6 children and live out in Windsor. We spent a lot of time together over the years we were all growing up, and I loved my Uncle Norm - just as I love Aunt "Rick" (her maiden name was Rickerson, and the nickname stuck! He was a truck driver prior to retirement, and I remember almost whatever we were ever doing when we were together - Uncle Norm was sleeping in the chair! Uncle Norm was 80 years old, and has been ill for the last few years, and he is now in a place where there is no illness. Although we will miss him on this earth, we will all surely see him again when we get to heaven ourselves.
Friday, August 29, 2008
Take heed: you do not find what you do not seek - old English Proverb
Home Health came today and re-set up the wound vac. It started beeping at 2:00 this morning, and I couldn't get it going again - usually I can, but the dressing had to be changed - it got an air pocket in there, and messed everything up. I put a manual dressing on until she got here, and told her I want to be off-duty at 2:00 in the morning!
Melanie and her family came for dinner last night - she made ziti that was just delicious, and brought it with her. It was great to see them all - the girls were very anxious to see Grandpa and I. Butch is eating better since he is home - not great, but - better. Caroline was also over to see him, and to bring us the rest of our mail - TONS of it, for goodness sake. She made a loaf of blueberry banana bread, and Butch has asked for a piece a few times - high praise, right now! Alan drove down from Ithaca and brought us an orchid plant - it is beautiful, with a big purple orchid in full bloom.
We called Pittsburg to find out what time the appointment was next week, and she said Dr. Gamblin would not be there that day - one of his associates would cover. I said that would not work for us - we are NOT driving all the way back to Pittsburgh to get a Doctor that has not been involved in this case. We worked it out that we will be going on the 10th of September - we will probably go down the day before and stay over, coming back after the appointment (I think it is at 12:30).
The j-tube has not been filling up as much, and I believe that is good - perhaps they will be able to take it out in the near future - we will see. The wound vac is not collecting much either, so - maybe that can go also. All to be decided in the future.
Next week we will be calling the oncologist and setting up an appointment to go see him. We don't know yet when he will begin chemo, but Dr. Gehring thinks we should at least talk to him (the oncologist) about it.
Wednesday, August 27, 2008
The Flowers are beautiful
Everything looks beautiful here - Zinnia's, Asters, Black-Eyed Susan's, Gay Feathers, marigolds, many others (Weeds too) - all in full glory. After I chauffeur Butch to the barber (yes - he still goes to his barber of 30 years - Frank), I will go to the produce stand over by the Blue Dolphin, and shop for groceries. Then - the weeding begins! BIG project, but - I am up to it. We have many tomatoes in the refrigerator. Irene picked them and put them there as they ripened - also have some green peppers to pick, and I saw one puny cuke (I garden in a barrel out front - gone are the huge vegetable gardens of yore). A funny thing - a bird must have carried a corn seed, and it is growing - one corn plant - in the middle of my flower garden out front. Glenn came yesterday and mowed the lawn, so that is all done - he (and Irene, much to our chagrin) kept it in shape for us while we were gone.
We feel like George Bailey in "It's a Wonderful Life" - hugging trees, seeing everything through new eyes, just enjoying the wonders of everyday life we ordinarily take for granted. I had a good time just watering everything this morning, and checking it out - 5 1/2 weeks inside a hospital does wonders for your perspective.
Flash is sticking pretty close to Butch - doesn't quite trust us not to disappear again - he also demanded extra treats.
We are so grateful for God's continued grace in our lives, and look forward to his leading us thru the coming months and years.
Tuesday, August 26, 2008
Home, Home on the Range - Old Cowboy song
Tomorrow, Butch will get a haircut, get hooked up, and we will call the doctor. I am confused - they (the attending physician) gave us a prescription (along with 10 others) for digoxin - that is the heart medication, and - I don't know why! I will find out though.
Flash is happy we are home - acted kind of stand-offish at first - I guess he was mad at us - he got over it though. He has sat with Butch all night - stayed away from his stomach, too! What a good dog he is - we really missed him a lot.
Dinner went well - everyone said they loved the goulash, and I felt real good about the whole thing . I am going to bed now - ready to collapse in a heap, I think.
Monday, August 25, 2008
There's noplace like home, noplace like home, noplace like home (Dorothy, in the Wizard of Oz)
Alexandria went to orientation for the high school today - oh my, oh my!
We are coming home a diferent way - up 79 to Erie, and across on 17 - little bit different for us.
When next I write - we will be home.
Sunday, August 24, 2008
Home is a place you grow up wanting to leave, and grow old wanting to get back to. - John Ed Pearce
Numbers are still all good, and therapy says he is in good shape. He still gets out of breath from any activity, but I guess that is normal - it is improving. He can get the spirometer up past 1250, and that is acceptable. In a few minutes, we will go outside - I must tell you, after I left last night, he read a book. He brought along Don Rickles book, which came out in paperback before we left, and he said it was pretty good. I think that is a VERY Good sign - he is coming back to the land of the living.
I am very excited. All of us on cholangiocarcinoma.org are composing letters describing our journeys with this horrible cancer. We are to complete them by September 15th, and are going to try to get Oprah to do a segment on it. We would like to raise awareness, and increase funding toward facilitating a cure. One of the women on cc.org wrote a poem last week, called "wish I had breast cancer", a kind of tongue-in-cheek look at all the things that are wrong with having this rare cancer. And, of course - most funding goes to the cancers that affects much larger groups of people, so we would like to make the public aware of us.
Saturday, August 23, 2008
Happiness is a choice that requires effort at times. - Anom.
Butch is sleeping in this morning - while the IV drips away. That could be a soap opera name, couldn't it - "as the IV drips" - instead of "as the world turns" - catchy, don't you think?
Did I ever tell you about Marty? He is a quite a character - 74 years old, married 53 years, owns a home remodeling business near Dushore, Penna. He is also a self-described "evangelist Minister" - he is a real prayer warrior! He prays for people on the bus, prays for people in the hospital, prays for all the folks at the house, etc. His wife got sick in March - gall bladder, and they brought her here. They found cancer when they opened her up to take her gall bladder, and many complications ensued. This is the 6th time this lady has fought cancer, but she was so weakened by all the complications that ensued that she had to go to a nursing home back where they come from, instead of home - a temporary situation, they were told. They didn't take care of her properly, and she contacting MRSA. That caused problems with her heart and her kidneys. They shipped her back here last month, and - she is on a ventilator and dialysis. Marty lives at the house and comes to the hospital every day. The Doctor was pushing him to turn off the ventilator, and he is resisting - he says God will take her when he is ready - he is not going to be the one to do it. Yesterday He fired that Doctor and got a different one, who is going to try a couple of different things. I ask you all to say a prayer for Marty and his wife - these are difficult gut-wrenching decisions that people are forced to deal with - they are amazing, both in the love they share with their life partners, and the love they have for the Lord.
I realize now how fortunate we were that Butch was able to come out of that last infection in as good shape as he has. We got a letter from the medical director of UPMC this week - informing us of the infection that Butch acquired while a patient at the Presbyterian campus of UPMC. On July 31, 2008, your wound was noted to be positive for an infection with Klebsiella pneumoniae ". Incidentally, this is one of the infections listed on the information sheet in the bathrooms that you must wash your hands to avoid giving/getting. It did cause the cardiac problems that he was experiencing, however his heart seems to be OK now. We also think the lungs are clear now, and the only thing left to lick (from the infection) is the weakness - but - we need to remember - he was weak coming in - from the chemotherapy.
Friday, August 22, 2008
We all live with the objective of being happy; our lives are all different and yet the same. - Anne Frank
It is HOT - high 80's, and it feels funny after all that nice, cooler weather. I walked down to that IGA I told you about (there are 21 steps to get to 2nd floor - elevator was all tied up), and the sun was beating down on me on the way there. I buy Butch's Fusion there. Later today we are going to try to find a scale to weigh him again - we would like to know what he weighs now, before discharge.
Since I have been at Family House, many people have come and gone - returned home, I mean. Quite a few people have passed on, also (6, I think). There have also been some happy news - people got their long awaited transplants (Not Susan , unfortunately), and some have returned to Family House after being released - for transplants, VERY serious operations, etc. I have learned quite a bit about many very rare diseases, as this is one of the places people come when they have one of those rare diseases, and seen a side of life that most of us never see. Joy - The lady who heads up the cooking crew most of the time (seeking out cooks, cooking and cleanup crews, shopping crews, etc., has the time because her son is waiting for a transplant. They got called to the hospital in the middle of the night this week - the organ was bad, but - that means he is close - Thank the Lord for that.
Butch has completed his therapies for the day, and his IV's (until the 11:00 PM one). Ankles are still a little swollen, but - not much. We are going outside now to enjoy the birds - we will take some bread to feed them. I must remember to ask the Doctor about coumadin for when he gets out of here - I would assume they would know, but - I've learned NEVER to assume!
Thursday, August 21, 2008
Seek advise but use your own common sense - Yiddish saying
We talked to Butch's Brother Tom yesterday - he is in Melbourne, Florida in the path of Tropical storm Fay. He said he is stranded in his trailer until the waters recede, but is OK - he has food, etc. He lives in a trailer park alongside Indian River, with the Ocean on the other side of that, so - this has happened to him before! Good luck with that cat scan Tom - we'll be calling soon.
Mom and Dad went to the Adirondacks today with the Conklin seniors - sounds like a fun trip - ride up on the bus, great lunch, train ride through the countryside. Dad has surgery on the 1st knee on October 13 . He is able to have the surgery after all, which is great - micro surgery, as I understand it, and the poor guy will be able to walk again - he has been in a lot of pain for a long time. We're happy you are going to get the surgery, Dad.
I asked the attending physician to run the other tumor marker test - the CEA - for us, and they took the blood this morning. We discussed that cat scan and told him we didn't want the test - he agreed, but said if any of these tests results go against us, he would have to do it anyway - we agreed, but said we would rather wait. The CA 19-9 came back at 3,100. We must have looked unhappy, because he told us not to panic - said to remember that he said there is approximately a 20 % error ratio either way, so we don't really know if it is trending up yet. It does, however, confirm our suspicion that we had better get back and begin chemo as soon as he is able to. I expect that we will be discussing this at length with Dr. Gamblin when we see him after discharge. I wish SO MUCH that we knew what it was before the CC was diagnosed - it would be so helpful.
Wounds 101 - I did change the dressing yesterday - on the j-tube, and the wound - under the watchful eye of the wound care nurse. I am quite proud of myself, but - hope Sharan is right - I will be glad to leave dressing changes and wound cleaning to the Home Health nurses - this is just "in case" - sort of an insurance policy, they said. I have learned many new skills over these last weeks which I sincerely hope I will never use in the future!
Wednesday, August 20, 2008
Remember yesterday, dream about tomorrow, but live today - courtesy of Sharan
They will teach me how to change the dressing for the wound - starting today, I will be changing it, under their tutelage (at least, that is what they said yesterday). That way - if Home Health doesn't get there for some reason, I can do it. This morning, they said they would hire me - I am a quick learner! The case manager says she needs to get a small, portable unit to go home, and she MIGHT not be able to get that by Monday - she is just determined not to discharge us - they must need Medicare money REAL bad here! They also mentioned this morning that we might need to stay another day because I need more training - imagine!!
Also this morning, they came in and started to give Butch an IV - to put contrast through his system for a cat scan that the attending physician ordered - to be sure all infection is gone from the wound/surgery site. Butch was also to drink a bunch of that contrast. Well - in the past , they have given him half doses of that contrast, and avoided testing as much as possible when contrast was involved, as it is VERY bad for his kidneys, and we know the trouble he has had with his kidney's. We insisted on speaking to the Doctor about this, and they have put it off until we do - he will be in later today. I would like to hear what he has to say about the kidney problem - just because the functions are good right now doesn't mean we should put pressure on them , I should think. And, in addition to the kidney problem, we asked why they couldn't put that thru the pick line, and they said they can't - have to insert an IV, N0w, we got that pic line on their advise - they said they were afraid his veins were going to collapse. I hate to sound suspicious, but - if a vein collapses, or the kidneys act up - that means more time in the hospital, doesn't it? Isn't that what they want and we don't want? I leave it to all of you - I know what I think.
I am also having a hard time getting therapy in here - the nurses have him on IV drips almost all the day today - and I can't for the life of me figure out why they have slowed that IV down to almost a stop. I swear they are plotting against me. I went down to the therapy department between IV's, and asked her to come to the room and help walk Butch up and down stairs - he did 8 stairs! She told them to hold off on the IV until we were done, and told us she would be back VERY early tomorrow to get it in before they start. Then we talked the nurse into holding off until we went outside for awhile - this is no rehab unit, I will tell you - rehab is last on their list. Most of their patients are too sick to get out of bed, so that works out for them! But I am determined that he get as much rehab as we can push them into - it will make it easier for him next week. We have not not seen the occupational therapist, except for her to introduce herself, since we got here - but - no problem - we have done well for ourselves - just putting those sneakers on and off has kept him moving!
Tuesday, August 19, 2008
What good is running when you are on the wrong road? Old German saying
We are getting a walker today - we don't need the wheelchair anymore - yesterday, Butch pushed it to the elevator and down to the solarium, carrying the wound vac in it!
We need to ask the Doctor if the glucose readings - which have been going higher and higher - are permanent or not. They told us the shots were temporary, but the numbers keep climbing - we will find out. His lab work shows he is still anemic, although better than he was. The electrolytes are better now - fluctuating slightly, but no real problems. He is taking zinc to aid with the healing process, and the Doctor wisely ordered him an anti-depressant, which I think is helping. I don't know how he got through this far w/o one - he kept insisting he didn't need it. I attribute my getting through this whole mess to #1 - prayer, #2 - support from family and friends, #3 - good food, and #4 - medication! Anyway, his lab results also indicate a continued problem with the bile ducts (we know he still has the sclerosing cholingitis - it didn't go away, as it was in the bile ducts outside the area that was removed) , and the GI Doctors say he is going to have that j-pouch for a long, long time - we need to know what that means, but I don't think they are sure - months, probably. It is filling up - a 3 mm pouch - twice a day, so - it is draining properly, but - it is a pain in the neck (abdomen, actually). It would have been better if they could have put the stents in, but, as Butch says - it is a small price to pay. Liver and kidney functions are still very good - the Doctors think he is doing very, very well. I told the Doctor that I have always referred to him as "the wellest unwell person I know"! Basically, he agreed - or - agreed that he is getting back to that place.
Monday, August 18, 2008
With a stout heart, a mouse can lift an elephant - Tibetan saying
The physical therapist had Butch climb some stairs this morning - 4 up and back down. He did well. Then we walked, and she gave him 3 more exercises - marching in place, etc. She will add 2 more tomorrow - he is working away, and doing better every day. The progress is a little too slow for him (and me, I'm afraid), but they say he is doing excellant. He says he feels like he is ready to turn that corner, but - hasn't done it yet. He needs to get rid of that washed out feeling - they assure us this is normal progress - 3 weeks of time for every week spent in bed to get back to normal. Occupational therapy is coming in after lunch, then we will go down to the courtyard and play rummy - big excitement!
They tell me that the temperature is to be in the 80's this week - much warmer. I have missed swimming in Mom and Dad's pool - only got a couple of swims in this year. Maybe when we get back, it will still be swimming season - I hope.
I will try going back to the yogurt today. Until 3 days ago, I was bringing yogurt in every day, but - he really doesn't like it very much, and I haven't for the last couple of days. Interesting that the thrush showed up after I stopped giving him the yogurt, so - we will go back to it today. He says his mouth feels a great deal better already - he IS eating a bit better, also - not as much as I would like, but much better. The milkshakes here at the hospital are not very good - the Doctor told me to go down to Wendy's (about 6 blocks) and bring him a Frosty - I would, but am afraid it will melt before I get it back!
I haven't heard anything more about stopping the wound vac - we will have to ask the Doctor when we see him. Also, I need to find out when the antibiotics are supposed to stop - at least through the IV (they mentioned a while ago that he could take a pill when we leave the hospital). They watch pretty carefully, because there are some pretty serious side effects that can happen with that vancomycin - particularly if you run it through the IV too fast. One of the side effects is called "Red Man" - the person turns beet red! That hasn't happened to him, but - he does get a lot of chills - that is why you see that blanket wrapped around him in the pictures - the antibiotic side effects, plus the weight loss combined and he gets the chills a lot.
Sunday, August 17, 2008
His Eye is on he Sparrow, and I know he watches me
"Early in the spring of 1905, my husband and I were sojourning in Elmira, New York. We contracted a deep friendship for a couple by the name of Mr. and Mrs. Doolittle—true saints of God. Mrs. Doolittle had been bedridden for nigh twenty years. Her husband was an incurable cripple who had to propel himself to and from his business in a wheel chair. Despite their afflictions, they lived happy Christian lives, bringing inspiration and comfort to all who knew them. One day while we were visiting with the Doolittles, my husband commented on their bright hopefulness and asked them for the secret of it. Mrs. Doolittle’s reply was simple: "His eye is on the sparrow, and I know He watches me." The beauty of this simple expression of boundless faith gripped the hearts and fired the imagination of Dr. Martin and me. The hymn "His Eye Is on the Sparrow" was the outcome of that experience. "
Mrs. Doolitle was referring to the the words of Jesus - spoken in the book of Matthew (chapters 6 & 10).
The Doctor has determined that Butch has thrush - as a result of all the antibiotics. He is taking some medication to get rid of it, but - it burns when he eats, and may be one of the reasons that he is not eager to eat most of the time. They put a pic line in for him to receive his medications (inside - up through the arm) - it was getting too difficult for them to get a vein for the IV's - we think this will be better - jeez - he has been a human pin cushion for the last few weeks - could get a job in the circus!
It is a very beautiful day here - quite cool this morning, bright sunny day - not a cloud in the sky. We called Irene yesterday, and Butch talked to Flash. Irene said the other day she took him over to our house for a while. He ran into the bedroom and jumped on our bed - his bed, actually. When she told him it was time to go, he was disappointed - thought he was home for good, I guess, and pouted for hours afterwards. Poor Flashy - we have turned his world upside down.
They opened an IGA food store down on Forbes Ave. - yesterday was the grand opening. This is a BIG deal, as there are no markets in downtown Oakland. I went there yesterday - it is on the 2nd floor - you take an elevator up to get there, or - walk the stairs. It was built - for the most part - expecting the Pittsburgh Medical school students who all live around here to use it - not convenient for older folks! Incidentally, school starts the 25th, and the students are returning to town - traffic is horrific - glad I am not driving. They are making lasagna at the house for tonight - I can't wait.
Saturday, August 16, 2008
Play the hand you are dealt - Jawahareal Nehru
Dr. Decroce (the attending physician) came in last night and told us that the CA 19-9 was 2,500. That is very, very good - considering that it was 19,000 before the operation. Remember - it was 20,000 at Sayre in March, 30,000 at Mayo in April, 48,000 when he started Chemo , and 19,000 before we came. Normal is under 37 (that is correct - 37 - not 37,000, not 370, not 3,700) - BUT -we don't know what Butch's normal was before the CC - possibly his was already high, because of the sclerosing cholingitus - as least that is what we hope is the case. They will take it again next week, and then we will have a benchmark to watch. Bilirubin is 2.0 - was 17 right after the operation (normal is under 1). Creatine is .9 - normal is under 1 - that is kidney function - came in to the hospital at 1.4 - hooray!!
Did you see Butch's new New Balance sneaks in the picture? I bought a extra,extra wide size and they JUST fit!
Flash is doing well at Irene's house - misses us, she says, and is her "shadow" - follows her everywhere. He lost a little weight, but - that is a good thing! Irene brings Abby (his best friend) over to her house for a "play date", and they all have a great time. We are so lucky to have Irene to do this for us - I don't think Flash could have gone to a kennel in any case - that would have involved him having to understand that he is not a person - he is a dog - and - I don't think he could have tolerated that. We will all be very happy to see each other again - I just need to worry about Flash not jumping on Butch's stomach - that would be disastrous!
I told Butch that home-made desserts are falling out of the sky at the house -somebody made the apple crisp I told you about two nights ago, the night before that it was brownies and ice cream, last night there was a pineapple upside down cake, and tonight someone is making a from-scratch carrot cake! Dr. Decroce says Butch SHOULD eat some sweets - just eat them in moderation. Sugar is energy, and he needs energy now. With the tumors gone, he can ease up on the dietary restrictions a bit, and he is ready to do that, I can tell you. However - we have learned our lesson - we will try to eat in moderation always.
Thursday, August 14, 2008
Don't halloo until you are out of the woods - Benjamin Franklin
I have developed a way of coping with minor annoyances like nurses not answering the call bell when we want non-medical supplies - pajamas bottoms, extra blankets, hospital gowns, etc. I took Sharan's advice - I simply go up to the carts they are stored in, take the sheet off and take what I want (back on the 10th floor - they didn't even HAVE any pajama pants on the carts)! It works very well - no irritation on our part, he gets what he needs, and - we have not bothered them. That is how I got the wheelchair I keep in our room, and the recliner (I rescued it from down the hall). When we got here, he had only a straight chair in his room. I asked - several times - if we could have one of the comfy recliners I saw out in the hall down across from the lounge. Everyone said yes -BUT -they had to clear it through some mystery person. After 3 hours and 5 people, I simply went down the hall and rolled it into our room. No one has EVER mentioned it since! I keep a cooler next to the bed and keep his drinks, yogurt, fruit, etc. that I bring in cool - when I relied on them - well - it wasn't good! I have 4 Cool packs which I take turns taking back to the house and freezing, so it works out. I also tell everyone that I am blogging, and make sure that they know I am writing about how our days are going ("Oh look - you'll be famous - I am writing about you on my blog") - it works on almost everybody! These are some hints you should keep in mind should you ever find yourselves in a position to need them .
Butch does not a telephone - Specialty Services hospital does not have phones in patient rooms - believe it or not! In answer to some questions - I get my sayings of the day from a variety of sources - one is the web site - "Wise Old Sayings". It gives me something to do to keep my mind in gear and off hospital stuff - looking up appropriate sayings. It is actually fun, and I have learned a bit, too. I don't know how many of you read the comments people leave, but some are very informative, and some are very funny! The reading audience is VERY savvy!!!
Friday AM - Well - home health is set up for Family House - Gentiva Home Health. Butch has walked all the around the unit w/o holding on to the wheelchair - big improvvement. They told me the wound vac can come off - MAYBE -next week, and we should keep him here until that happens. They took the staples out from the "Mercedes" incision on his abdomen, and - things are looking up!
I played pinochole with 3 others ladies at the House last night - two of us who know how taught two ladies who haven't played for years - it was a lot of fun, and - good practice for playing when we get home. The dinner was great last night, and the dessert better - appple crisp, warm from the oven - with vanilla ice cream - can't get much better than that in my book. I hope by the end of next week, I will be cooking for everybody (we all chip in for the cost) - once Butch is out of the hospital I will take my turn. I will make everybody banana bread for an appetizer - and who knows what else? Cooking for 40 people will be a test of my skills - but I will have assistants who will help me. One person plans and oversees the meal - three other assist and clean up. It is a little scary - much easier to just assist - but - they say they need us to take a turn as "master chef" - planning, purchasing, and overseeing the preparation. Many people cook their ethnic specialties, so it is a lot of fun - and - great home cooked food. This is my big chance - all those years of watching the cooking channel should pay off now!
Wednesday, August 13, 2008
Come what may - time and hour runs through the roughest day - William Shakespeare
We walked two more times ourselves this afternoon - he is pooped out now! Enough for one day.
I need to see the dietitian or the attending physician or someone - got the menu for tomorrow - it says NA2GM (nothing with salt over 2 grams) - HORRIBLE choices - salt free beef broth, etc. (he was on a regular diet). Called for someone to explain - different people have told me that 1) the Dr. changed it - 2) NOBODY changed it - it came in that way (it didn't) 3) - I shouldn't bother my pretty little head over it - that was "their business to worry about" and - 4) NA2gm IS a regular diet - I am mistaken! Well - I have asked to speak to the floor Doctor when he comes in, and informed floor personnel that this IS my business , and I take it VERY, VERY seriously. I am asking that NOTHING be changed dealing with his diet w/o talking to him - and ME - first. I doubt the doctor did that, as he told Butch last night that he HAS to eat , and - I should buy him food in the cafeteria to supplement if we don't like the food here - which I AM doing, but - this is ridiculous - if he KNOWS I am going to supplement - why restrict it so seriously that there are no good choices? But - his ankles ARE very, very swollen - so - who knows what is going on. I will find out though. They are trying my patience!
2nd blow-up of the day - they won't let me take him outside! I asked yesterday and they said I needed the attending physician on the floor to sign orders that he could. He didn't come until after 9 last night, so - I wasn't here, BUT - I asked the nurse to be SURE to ask him. She said OK - and - the order wasn't written up. They told me I couldn't take him off the unit again today, and I blew up! I mean - we are going backwards - "is this a prison or a hospital", I asked?. Well, I got to the case manager and expressed my unhappiness, and she - eager to humor me - must be moving the mountain. She just came down and called me out into the hall. "Do either of you smoke?", she asked. I said no and she said she was working on the problem. Well - we don't smoke, but many of the Montefiore patients DO go outside to smoke, and - if I said yes, would we then not be able to go outside? It is a moot point, as we DON'T smoke, but I think you get my point. I also complained to her about the menu situation - and she told me I could meet with THEIR dietitian in the morning , and we could come up with a compromise. Jeez Louise!
I did ask her about the Doctor saying Butch could go home in 6 days and she said yes - 5 or 6 , BUT we might need a few more days here because home is out of state. I mentioned that we could go to Family House for a couple of days, and she said I need to call Tioga County and find out if we can have our pick of Home Health companies, and then she would arrange for continuation of care - a company that services here AND Tioga County. I am not sure why Tioga County has to have anything to do with it - seems to me it is Medicare and Tri-Care we need to worry about, BUT - I will call to humor her. Mellie is checking into the rehab unit at Bridgewater - Methodist Homes is a possibility, also. This is our backup plan which we MUST have in order to spring him - I do not expect to be using it. If I don't have one, they will make a plan for him, and we don't want that to happen! I am becoming desperate to get him out of here, BUT I do need to make sure that he is ready - taking him home too soon wouldn't be smart, although - once we are home, I think he will get better FAST. His color is very good today, and his sense of humor has returned - for the most part. There are many things here that you just can't make into something funny, matter how hard you try!
Our old Doctors came in - from Dr. Gamblin's team -to check the j-tube and wound. I told them they switched wound vacs today - to a smaller, more portable unit. They said maybe this is the one we are coming home with. Everyone has been telling him to eat, eat - and then they gave him a menu where they took all his menu choices away! I don't get it. Anyway, they are satisfied with his progress. The j-tube has stopped draining so much, and the color is better - no tinge of red, so - that is a good thing. They didn't mention the stents - who knows? Maybe he will luck out for once, and not need them.
The rest of the story - I met the Doctor (he came in at 7:30. Nice guy - loves to joke around. He said he would put him back on a regular diet - claims he didn't change it - that it came over that way (no matter that yesterday he was still on a regular diet - oh well!). Also said "no problem" to the going outside - and gave me a copy of the lab work - I have been asking for 3 weeks! He is going to have a CA 19-9 taken tomorrow - that will be great - we can see what it is. Well - mission accomplished! I feel like I have won a war -BUT - I didn't get him outside yet - better not crow too soon - and I haven't seen a menu selection that says "regular" diet on it either - we'll see what happens.
Thursday AM - WHen I got here - the case manager was in here - making sure that Butch ate his breakfast until I got here! She said the dietician is not in today , but we will figure it out. I will know when I see the order form for tomorrow if we still have a problem - I will let you know.
I called Tioga County and they said they are the sole Home Hlth agency for the county - call before we leave Family House - we are back to thinking we will have to stay at Family House for a few days - that OK though - we can do that!.
I will record today's happenings as a draft and publish in the morning - this works out well for me - I don'tforget things this way.
Friends are God's way of taking care of us - unknown
Monday, August 11, 2008
Faith is the ability to not panic - Unknown
It is now 10:00, and we have walked - with the physical and occupational therapists - out in the hall. We walked about 50 to 60 feet, and I followed behind with the wheelchair, then he rode back. That was good - he has arm exercises to add to the leg exercises now, and he is gaining ground. He just asked me what channel The Price is right is on - and he is back to hogging the TV remote - I take that as a good sign. He also is not interested in listening to that healing channel anymore - but I still enjoy it! Some friends that we have met here - the man had Whipple Surgery 3 years ago, and the tumor came back - he just had liver surgery again) just stopped in to our room on their walk up and down the hall - he was operated on about the same time, and he is JUST going on solid foods today! Walking pretty good though, I thought. We are the "band of Brothers" here - all the people from the 3 Family Houses that ride the shuttles back and forth to the hospitals, and all their loved ones here at the various institutions. We share our triumphs and our sorrows, and it is such a good thing for all of us. There is a lot of sadness, but - sometimes great joy, also. When someone gets that long awaited transplant, or takes a turn around the corner toward better health, everyone is cheered up, and happy for the people that have persevered and climbed out of the pits! All the nurses were cheering on Butch this morning, also - they saw him slip back and are happy to see him climbing out himself. There are transplant people here who languished on lists for - literally - years - at the Cleveland Clinic, Mayo , etc. This is the place that will accept high-risk people and try to save them. That means that many of the people here are VERY ill, but - they are being helped. Butch is a perfect example of a "high-risk" patient who was accepted here for surgery when more conservative institutions wouldn't touch him. Because of the "high-risk" factor, more complications can arise - and - they have - but - we need always to remember where he would be if he HADN'T attempted this.
We talked to a lady from the "Select Specialty Hospital" - which is basically the South unit on the 8th floor. They are thinking of placing him there. In order to be on the rehab unit, you have to be able to endure 3 hours of therapy a day, and he can't do that yet. He also has "special needs' - the wound vac, among many other things. So - we will probably go there, and from there to rehab, and on to home.
God IS good, and he is here with us in this place. We can feel his presence - Couldn't have made it this far without him. Remember the 23rd psalm? "Yes- though I walk through the valley of the shadow of death, I will fear no harm, for thou are with me". We are mindful of that psalm, and try to always remember it.
I have posted a picture of Butch outside the Hospital - he looks pretty good, doesn't he? He pushed the IV pole with the equipment on it, and I pushed him! We are quite a team!
Sunday, August 10, 2008
It's Sunday again
When I got here this morning, Butch is doing better than yesterday - when the cart came around, he asked for French Toast with his breakfast - always one of his favorites. We always go out to breakfast after church on Sunday, and he very often gets French Toast, or - even better - waffles. He has evidently decided to rejoin the land of the living because - he cleaned his plate! He has mentioned a couple of times that his Brother Tom was right - he HAS to eat, or he won't ever get better (no matter that that has been my mantra day after day - why listen to me!). Tom - thanks for backing me - when some of the Doctor's were telling him it was fine - "just drink the ensure" - it was hard to swim against the tide, but - now that he got in a state where he is COMPLETELY run down - everyone is saying - "eat, eat - you have got to eat"! Anyway - it is definitely better. For a few days - he was asking everybody if it was OK to just drink the ensure - and they were saying it was OK! He was giving me dirty looks and inferring that I didn't know what I was talking about! Then - thank God, he asked Dr. Gamblin, and he said of COURSE Butch has to eat solid food - he and Tom started to turn the tide. FOOD IS STRENGTH. Anyone that knows Butch knows that he has been a pretty good eater - can really pile away some food if he wants to - it has been just so hard to see him in this anorexic state! Anyway - things are improving each day. OK - enough obsessing about the food situation.
Today is another cool day - high 50's right now - at 9:45 AM. The weather certainly has changed - this is late September weather - it is beautiful, though. Sun is in & out - blue skies/grey skies - sort of like our lives! I lost the only sweater I brought with me - don't know where - probably on the bus, and I need to take the city bus out to Target to buy another one - Joyce's big adventure - need to change buses - Target is on the other side of Pittsburgh, so it will be a change of scenery. I am on corner 3 out of 4 on the Christmas table topper, so - I might need to go to Michael's also - to pick up something else to work on. I finished reading "The Shack" - a very inspirational story about a man who lost his youngest daughter to a child molester. I am now reading "Tallgrass" - a story about the Japanese "holding" camps that we set up out West during WW11 for Japanese/American citizens. I also have a book of logic puzzles with me - exercise for my mind. Last, I have walked further , since I have been here, than I have walked in YEARS! If it wasn't for my poor back and shoulders - I would walk even more. Yesterday when Butch was combing his hair, he said he never thought we would be here long enough that he would need a haircut - well, me too! I should have taken an apartment.
We have walked - it was the first time in 2 weeks that he has walked further than from the arm chair to the wheelchair - 5 feet! He did well - I carried the pleur-vac, and we unhooked the wound-vac ( we got permission 1st, of course! He walked about 30 feet down the hall and back - totally wore him out, but - it's a start. We have some exercises to do for his legs, too - the therapist says that for every day in bed, it takes 2 to 3 days to overcome the inactivity.
Well - it is 5:00 and I did take the bus to the waterfront shops, where there is a target. Enjoyed the couple of hours out of this atmosphere - bought a new cardigan - will try to hang on to it this time. It was a pretty drive, along the street that Carnegie Mellon is on - lovely old stone buildings - and a nice view down along the Allegheny River. While I was gone, they gave Butch another x-ray. The one from yesterday showed a lot of fluid still on that lung, so - he has the pleur-vac on for another day. I really hope that fluid is gone and he can get off that thing. The Doctors haven't come in yet this afternoon - this morning they stopped briefly and said - "carry on - try to move around, and EAT".
Saturday, August 9, 2008
What's new on Saturday
Late yesterday they took Butch back down to put a drain hookup in for the pulmonary effusion (fluid collecting in his lung) It is draining now - they will take it out tomorrow. There is not as much this time - last time they drained out a liter - it is about 1/3 of that this time - so far. There is a little machine - called a pleur-a-vac that is draining. It sits right next to the wound vac. Because of this problem with the lung - he still has oxygen on, but hopefully that will be gone tomorrow. He goes for periods of time w/o it, but - any exertion - even sitting in the chair, and he needs some oxygen. Later today they are taking a lung x-ray to check on the progress.
We did manage to get scrambled eggs and hot cereal for breakfast for him, but - then I realized they didn't give us the menu selection for yesterday, and none was forthcoming for today. I called the service representative (from dietary) and told her. When I called two nights ago - the girl on the phone said to me "Give me your fax number and I will send you a menu selection". I told her - not very politely that I was a customer, not an employee - don't know the fax number. She basically said "no fax number - no menu selection". I went out to the desk and asked the girl there to give me the fax number to tell dietary, and she said that was ridiculous - they were being silly. In the end - no dinner, I bought him dinner from the cafeteria (again). Yesterday - no meals because of testing - but we fixed him up with something from here. Today - nothing if I didn't get this straightened out! Well - she checked and said there was a "hold- no menus or meals delivered" until someone (can't be me - I am not an employee - someone with authority) changes it - naturally, she blamed the floor personnel for not taking it off after the tests were done last night. The floor staff said - not true - if it were, he wouldn't have got the a la cart for breakfast. Well - I was pretty hot, and the person on the other end of the phone agreed that there was a good reason for my "distress", so she took the lunch and dinner order over the phone, had someone hand deliver the menu selection paper for tomorrow, and - set me up for free guest meals today - anything I wanted. I was mollified, but - we shall see what happens in the future!
I did manage to take him outside to a pretty gazebo near the front entrance. It was quite a production, what with all the equipment and all, but - he did enjoy being out there for about a 1/2 hour. It was a bit on the cool side today - more like September weather than August we thought (temp in the low 70's - unlike Dallas, where Sharan said is was 107!) , but it was very pretty - beautiful blue sky and big puffy clouds. There are beautiful flowers planted in this "Tranquility Garden" - black eyed Susan's, hydrangea's, portulaca, huge white flowers (looked like moon flowers, but - moon flowers bloom at night), and many other plants and trees. There are bird baths and a couple of fountains, and many birds, and it was very peaceful there. Will get a picture when we go out tomorrow - don't have my camera today. He spent most of the morning in the chair next to the bed and the wheelchair, so - nap time now - he is zonked. That drain into the lung is hurting him, so that takes a lot out of him. I forgot - he did walk - a short bit - back and forth to the wheelchair.
No one has said anything about the rehab unit in the last couple of days - until the lung is under control - I don't think that will happen. But - I told him we will continue our own occupational and physical therapy - I keep track of the ADL's (activities of daily living) and write it on the paperwork on the door for him - everyone seems happy with the progress that he is making, so - I believe we are on the right track.
He has been watching much more sports and news on TV - and eating quite a bit better - when they let him eat. He is VERY frail and thin, but - I do see progress. Yesterday - he asked for a vanilla milkshake, which I went downstairs and bought him - it was the 2nd thing he has asked for since the operation - the 1st was a chocolate smoothy, which he liked a lot. Although we were trying to stay away from sugar - now is not the time to be restrictive - my theory is - if he wants it - he gets it! We thank God every day for getting him this far, and ask for continued grace to see it through.
Friday, August 8, 2008
Friday - skipped Thursday
The shuttle was late yesterday - when I got here (about 10 of 8:00), he had already been taken down to GI for the ERCP. I caught up with him in pre-op, and stayed in the waiting room until they called me (8:30 to 9:30). He had two medical charts that traveled with him on the stretcher - LONG medical history - just for here! The Doctor was not able to do the procedure - the tube will not reach down as far as they need to go. So - today - they do two stents - one for each side - externally. We are waiting now for this procedure.
He does have more color today - in his face - and is MUCH more alert, and talking a bit. He has recovered his sense of humor, and that is a VERY good thing. This morning I brought his hat back in - I would love to take him in the wheelchair to the gazebo and garden I found on the grounds - it is beautiful - flowers and birds - fountains, bird baths - very serene and quiet, except for the nature sounds. Maybe this afternoon - probably not until tomorrow, though. This morning is the 1st he has stated that he is getting better - slowly, but surely.
Last night they did the CT scan, and found the other infection they thought was there - need to reposition the j-tube (pulling it up) - it is collecting stuff in the position it is in. Also saw fluid around the lung - causing the breathing problems - need to drain it.
The Doctor's come and go - I know most of them, along with the nurses and aides. Except for the dietary screw-ups (which continue to infuriate me!), things are much better now. I honestly do feel that - when it comes to liver problems - you can't go anyplace better - UPMC knows livers, and Dr. Gamblin and his team are the best. They have the same goal in mind that we do - get him recovered and - out of here! Hospitals are just no place to be when you are sick, but - they are necessary for our survival!
Later on Friday - they attempted the stents - were not able to complete - because the bile ducts were not dilated enough. Need to do some OTHER procedure - this is VERY frustrating,but - it is because the sclerosing cholingitis has hardened and scarred those ducts - Doctors ALWAYS have trouble with them. Not sure if they are going to do this today or Monday - or if repositioning the j-tube will solve the problem and he won't need them! Stay tuned for next newsflash.
Did I tell you about the gelatta? Yesterday I walked down to Forbes St. (eateries, shops, etc. - about 3 blocks away from the hospital). They have a place called Rita's - bought a gelatte - layer of custard, layer of lime Italian Ice, layer of custard - yummy! Going to do it again today - different flavor, though - to try something new!
Wednesday, August 6, 2008
3 weeks today
2nd biggest problem is infections - when you tinker with the liver, it leaves the patient open to all sorts of infection problems. We are working on that problem now. Tomorrow, Butch will have another CT scan. He couldn't have it today because they need to have him on something to protect his kidney for a 24 hour period before they give him the dye they need to do the CT scan. When he came into here his Creatin level (kidney function was 1.4 - now it is 1.5 (he had a problem already - remember?). They want it at 1.0. So - tomorrow - they will do the CT scan to see why he is so weak - nothing is showing up in the bloodwork - except white count is off. The Doctor said tonight it may just be that he is severely anemic (Well - he DID bleed all day on Monday!). They will probably give him a transfusion tomorrow if that is the case. Also, they say they have a 50 % chance of success at the ERCP (down the throat) to put the stent internally - if not - procedure to do an external stent - all towmorrow. Tomorrow will be very rough, I am afraid.
He was more like himself today. Did I tell you that the day we went outside - he asked about his HAT! - He had a hospital gown on, for goodness sake, and he wanted his hat! Two days ago I was blogging on the laptop at the hospital. I did something -don't remember what - and the computer made a strange sound. He woke up out of a drugged sleep , looked at me and said "what did you break now?". Today, as the Doctor was doing a procedure on him (setting up the wound vac), he started talking
about the presidential election with him! He is coming back - I can tell. If we can conquer the weakness (he is gasping for air if he moves around at all), I think he will be around the corner.
They hooked up the wound vac - it is this machine that vacuums up the nasty stuff in that big wound, so that it can - supposedly - heal in half the time. Dr. Gamblin said if he had invented that thing - he would be playing golf right then instead of doing rounds! He also said if this goes on much longer, he will have to come to Endicott and caddy for Butch! The dressings only nee4d to be changed every 2 to 3 days now, instead of 2 to 3 times a day - that is wonderful.
Transitional unit is on hold until we find out about the weakness - maybe the end of the week, I hope. We had a student nurse today - she was wonderful - attended to his every need (that she was allowed to). He got all the ice water he wanted, fussed over, and the real nurse checked in on her to be sure everything was OK. I think they gave her to us because I was such a pain - but - It was good for us, and good experience for her too.
I am sad to tell you that Bobby died yesterday - Sharon was flying home with the casket today. He was such a nice man, and struggled so long and so hard, it is such a sad thing - he got pancreatitus, and couldn't recover - his body just shut down. He died peacefully.
On a happy note, tonight a family that adopted Family night put on a summer picnic - barbecued ribs, chichen, fruit kabobs, all kinds of home made salads, and wonderful desserts. They do this once in a while - Christmas party, etc. They had such nice decorations, and I won a door prize - assorted teas, mug, magazine. It was very sweet, and everyone had a very nice time.
"And this too shall pass" - I hope.
Tuesday, August 5, 2008
As for The ERCP - the ONLY person with enough experience to do his potential ERCP turns out to be off until Thursday - so - we will BEGIN to schedule him again on Wednesday night. They have stopped by - a Doctor from Dr. Gamlins team, Social worker, etc. - to say they will put him on another floor - a "step-down" unit - he no longer needs this level of nursing care - needs rehab and therapy. This morning he is still white and pale - all the color drained out of his body with the blood loss - but a little color has come back in his cheeks.
Joyce's therapy report - He sat in the chair while we washed up - he shaved - ate in the chair, and we walked around the bed to get back in. Then lunch came - ordered soup and a sandwich - they forgot the soup! When I complained - the aide ran right down to the kitchen. When she came back - she said -"the reason they didn't put the chickn noodle soup on the tray is that they ran out of it - here is some beef broth - OK?" Now - I wonder why they didn't put a substitute on the tray in the first place? Also - they forgot the ensure - I give up! Anyway - we walked around the bed again to get in on the other side - after he sleeps for an hour - we will try the chair again. Therapy just now came in - but - we don't really need them - just need Butch's strength to come back - and - it is - a little at a time. I made him "trail Mix" for this afternoon chex mix, raisins, goldfish, and he snacks on that. Today - he ate what we managed to get for him here, also drank fusion, Tropicana, ate an orange, and a yogurt. Not bad! Tonight is spaghetti and meat sauce - if they deliver it that is - what are the chances??
He is off all IV's and medically - he SEEMS to be fine right now - except for the strength - he still needs an assist from oxygen - gulps for air everytime he trys to do anything - I hope this will get better with time. Of course, we still have the problem of the j-tube and the leakiy bile duct - Thursday will fix that (I hope). Also - they are delivering a wound vac - which we will use to "vacuum" out the wound - it is one of the reasons we cannot be discharged. It will promote healing of that wound -
Now we just have to wait for a bed on the other unit - they are ALWAYS full, the social worker said - so - who knows. She mentioned that if we could not get a roomn here - amybe he could go to Magee's women's Hospital - a few blocks away. They have a rehab, and - it is not just for women, and - the shuttle that I take from Family House stops there. At this point, that sounds great -BUT - a couple of people have already complained to me about Magee's. I hope to find out later today. We are listening to the soothing music while Butch sleeps, and I am going to try to take a nap myself - in the chair next to the bed. All this complaining is EXHAUSTING me.
Monday, August 4, 2008
That's all folks - walked to CVS (that's the only store within walking distance). I do my grocery shopping there! I bought myself a triple dip nutty buddy and ate it walking back to Family House. That made me feel a little bit better.
Sunday, August 3, 2008
Addenda to Sunday
I forgot to complain about last night's dinner. When he moved, his food still got delivered to the cardiac unit. We told them to get him a tuna fish sandwich on whole wheat, and some tomato soup. I HAD to leave, as the last shuttle on the weekends leaves at 6:30. She was supposed to be getting it when I left. Also - I told them to get his ensure out of the refrigerator and give to him about 9:00, along with some yogurt. Well - NONE of that happened - he went without, and - when I got here this morning - he had cold cereal and cranberry juice for breakfast - that's all! This is the reason I feel I must be here almost every hour - if I am not - he suffers. It is totally ridiculous. We told the Doctor's this morning, and they said they would look into it. Translated - that means - nothing will happen to change this screwed up system. When I get him him - I WILL be writing a letter to administration, you can bet on it. I might also speak to the patient advocate - I just need to be careful while he is in their hands, we believe. Now that he is here, on this floor - the food delivery should happen, but - JEEZ! There - I feel better.
Do you remember Susan? The lady who needs small lungs? Well - a pair came in this last week, and they gave them to someone else - who needed them more (She got bumped) ! She needs them pretty bad - she needs to decide if she should stop taking her meds - so that she can worsen enough that no one can go in front of her, but, needs to not die from the effort. Some system, huh??
Bobby and Sharon - they are staying at Family House with us. They are an 8 hour drive South away. Bobby needs a liver - this is his 4th liver - his body rejects them after a period of time. 3 weeks ago he was in intensive care and Sharon was given no hope. He pulled out of it and they came here last week - drove up. He had gained 100 pounds - fluid - and - they drained it off. They drove back,, had been home 2 hours, and got a call - liver was ready. They airlifted them back here, and he went in. The Liver was bad - no good. They stayed here, as he is too sick to go home again. In the middle of the night two nights ago - he went into liver failure and pancreatitus. He is here - in intensive care, and no liver in sight. I see the helicopters landing and taking off - from the roof - about every 5 minutes. They are bringing in patients, and organs, from all over. Yesterday 4 livers came in - all bad. When you see this, it is a glimpse into a world that most people never need to view or understand - just heartbreaking.
One step forward, two steps back
The food situation got ALL screwed up when we transferred back to GI recovery - which we did last night. We are in N-1063. I just went to the cafeteria and bought us both a huge piece of pizza - lunch was simply not edible. The nurse said to wait a little while (hoping that wound will stop bleeding), and then maybe he can sit in the chair for awhile. he is still pretty alert today, but - this is VERY disccouraging. Caroline - I asked him your question - he said he is not ready for golf next week - but - he will play again.
Dr. Gamblin is apparently a day behind on the news - when he was in this morning - before all you-know-what broke loose - he was talking about discharge in a couple of days - to some rehab facility! No wonder we are confused - I can bearly get what is happening written for you all, and it changes! This is the news as of 1:50 PM!
Saturday, August 2, 2008
A Red Letter Day
We really need to work at this weakness problem, as they are talking about discharging him to a rehab facility - nearer to home - and - that is OK if we have to, but we prefer not! It will depend on him regaining his strength. He said he can feel it returning as he gets up, moves around, etc. That heart probelm (which was probably caused by the septecemia) set him WAY back, as he couldn't do anything for a few days - without setting off the heart monitor. Anyway - he has walked a bit - back and forth to the chair and the wheelchair, and I feel we are gaining stride here. It is a very good thing that they causght that infection early - it was bad enough as it was!
I posted that picture of the lunch from the other day, and today's lunch was really very good - pasta with meat sauce and a nice salad - that's what we asked for, and that's what we got. He also had scrambled eggs and oatmeal for breakfast - and I didn't have to buy the eggs at the cafeteria! If dinner is edible, we have a home run! He understands now that the way out is through his stomach, and he is really making an effort.
Mellie got back OK and the girls and Glenn were glad to see her - they also liked Fred and Ethel. Thank goodness she was here just before we turned the corner - when I really needed her. I think we are good to go now. Did I tell you we are leaving the cardiac floor today - going back to 10 North at Montefiore - GI recovery. Just before Dr. Gamblin left, I asked him when does he think? Monday? (remember , Dr. Yu said Sunday yesterday and I almost collapsed). He said "let's evaluate it again on Monday and see." So I don't know - but - barring anything else going wrong, I think it is fairly close - just don't know where to.
I am thankful to God for carrying us through this far, and ask him to take us all the way - back to Endicott safely. I know that he heard all of your prayers , and am so grateful that Butch and I have so many people thinking of him, and praying for him. It has really been good for me to have this blog - I am really a long way from home, and the blog has helped me to not be quite so lonely.
Friday, August 1, 2008
Talking about going to Family House
What that means is that the heart beat is swinging back and forth between the two conditions, trigeminy and A-fib. They are adjusting the medication accordingly, and are getting closer - the cardiology team is happy with the progress. 2 days ago his legs and feet were so swollen -it looked like he had elephantitus - the swelling is almost all gone (the lasix part).
As for the infection - haven't spoken to the infection control team yet today, but - they said yesterday infection is almost gone. He is on a pill now, so we can leave when everything elso is OK. Switching over to counadin will help with going home also. As the electrolytes get stabilized, and he uses less and less pain medicine, his confusion is clearing up.
Dr. Yu - from Dr. Gamblin's team - came in and said we should be in control of that heart beat soon, and - he is thinking about discharge. He talked about POSSIBLY Sunday , and discussed with Butc and I whether we should go to Family House or a rehab facility - naturally, Butch wants to go to Family House. I just worry because he is SO weak - hasn't walked in 3 or 4 days, can't even sit in the chair without discomfort. Because of that, I said until Physical and Occupational therapy takes a look at him, I withhold my vote. They came - about 1/2 an hour later, and evaluated him. When they got him standing up - his blood pressure dropped, and it is already low. So - they got him back in bed and today he is going to try sitting up for periods in the chair and breathing into the spirometer. Tomorrow , he will try walking again.
He ate solid foods again yesterday - and today - he is doing quite well with the solid foods. Mellie and I went to the store and brought him frest fruit - cut up melons, strawberries, blueberries, etc., and he likes that. Also - brought him scrambled eggs abd he ate most of them (I finished them - can't waste food, you know)! The breakfast they offer you is VERY limited - cold cereal or instant oatmeal, a banana, hot coffee or tea - you really need to supplement it with something more substantial. He really likes that berry V8 fusion, and drank it even when he was terribly ill. That is great stuff - an 8 oz. glass is a full serving of fruits and a full serving of vegetables. With that and 2 or 3 ensures every day - you can go a long way towards making up for the lack of nutrients, BUT - without solid foods, you can't really get your strength back. And - he really didn't want to go on the total parental nutrition by IV if he didn't have to. So - food is coming along.
I can't tell you how much it boosted me up to have Melanie here with me for a couple of days. I am feeling much, much better now. I got a little more rest, stepped up my medicine (after consulting the Doctor), and we spent a bit of time away from the hospital. I am learning that this is MUCH more difficult than I anticipated, and I must learn to manage the stress. I have been waiting for him to turn the corner, and it looks to me now that - it is "just around the corner"! However - since things change on a dime here in this altered state of reality - let us not get our hopes about discharge up to much - and - I want him to be stable when we leave.
To anyone who is reading this from work - I don't really like being on this end of the medical spectrum - I would love to leave medicine to the professionals and be dealing with computers! I have seen - up very close - how the computer systems are utilized here by the clinical staff, and what they think of the system - there are a LOT of manual systems in place - everyone seems to have one, in addition to the elctronic system, due to - among other things - a basic distrust in the stability of the computer system - for very good reasons, they assure me. They are in the midst of going total electronic - but - have a LONG way to go, I think. I miss you all and am looking forward to a future when Butch is on the road to recovery, and I can return to work. After this, work will seem like FUN (I hope).