Sunday, April 27, 2008
Could you send her a card, a note, a postcard or anything else. She's not able to use her computer because her fingers don't quite work right at the moment. It might help if you could let her know that you have been following her terrible journey. You can just sign it with your blogger name or just say someone who reads your sister's blog. I know this won't take away much of her worry and angst but it might at least get a smile out of her.
Her address now can protect her anonymity, because you don't have to use her last name. So you can send greetings to her at:
1300 Hidden Lakes Parkway
Golden Valley, MN 55422
Thank you so much for whatever you are able to do.
Thursday, April 24, 2008
Tomorrow we are driving to San Luis Obispo, which is about 5-1/2 hours down the coast. Kerry's Porsche club is having it's annual North Meets South gathering. There will be lots of folks from both ends of the state driving old 356 Porsche. We are taking the Prius. Kerry's Porsche isn't quite ready for the open road and it's definitely not ready for a long drive. The people who belong to this club are a lot of fun.
I've identified some quilt shops in the area that I definitely want to visit.
More on the mother of the groom outfit; I think I've found a dressmaker who may be able to do it. I ordered the pattern so when it gets here I'm going to meet with her. The samples of her work on her web site are stunning. Check out her site at http://www.kimscouture.com/
She works from patterns or she will design a one-of-a-kind outfit.
We get back from San Luis Obispo on Sunday night. Then it's only one more week until quilt camp. Yippee!
Wednesday, April 23, 2008
I have not left the property since last Friday. This is an all time record for me. I'm very proud of this record. I needed some down time.
I'm going to have to leave today; I'm meeting some women friends for a drink. We call ourselves WOW...Women of Wine. It's a pretty casual group; we meet at a local Italian restaurant, drink wine and talk.
Most of my time at home has been spent working on various fabric projects. My design wall has lots of stuff on it. The blocks on the left are for the Block of the Month group at one quilt shop. The blocks on the right are for the Block of the Month for another quilt shop. And the applique blocks in the middle are another Block of the Month group. Block of the month is an easy and inexpensive way to get enough blocks for a quilt. These blocks will end up making three different quilts. The group of blocks on the right is closest to finishing.
I'm really enjoying doing the applique blocks. It's like painting a picture using pieces of fabric. Plus I'm finding all kinds of ways to embellish the applique. Our applique teacher is a purist so frowns on embellishments; nobody really listens to this, because everyone is having so much fun finding things to add to each block.
The lime green fabric lying on my desk with the two long white legs is a wall hanging I'm making. It's a wild and weird looking cow on green fabric. The background has three kinds of green fabric including one that has the logo for John Deere tractors (found that in Minnesota, naturally). It's primarily applique. I'll take a picture when it's done.
So, time to go create and work on the body of the cow. Life is great and Vicky is doing very well. They are talking about removing the trach. When it comes out, they bandage the hole and let it heal from the inside out. Then she can start eating real food and have that awful nose tube removed. She has not eaten since Feb. 6th; her weight is down nearly 40 pounds. That's an awful way to lose weight.
Monday, April 21, 2008
First Vicky; she moved to her own room at the acute care facility after she had gone through four days of assessment by the medical staff. That's a big step. This week Neil will meet with the staff to go over the treatment program they have developed for her. That probably won't happen until Thursday. I asked Neil to take notes so he could tell me everything. Maybe they will even have a copy of the program for him.
Thursday, April 17, 2008
The shoes are called Sprongs. Made by Z-Coil -- http://www.zcoil.com/ --,which is a company in Albuquerque, NM. The guy who invented it was a runner who experienced all the usual aches and pains from this sport. I know they look weird, but trust me they are so comfortable. This shoe accomodates my very wide foot. The tension of the springs depends on the weight of the person and how they walk. Normally I would have taken a medium spring, but because I strike on my heel and role forward, I take a light.
We first saw these shoes on some of the nurses in the ICU. These people are on their feet constantly so good support is essential. During this last visit we asked where they got them. They sent us to a nearby store called "Sprongs." We discovered that it is owned by a mother and daughter. They sell these shoes plus fantastic jewelry and very creative purses. I was skeptical about the shoes but tried them on and was won over. You can replace the z-coil about every 500 miles or if you detect wear on the heel part. You can order the replacement on line and then just screw it in.
So these are my sandals for the summer. I always get a new pair each year. I couldn't figure out how to get rid of the "regular" and "wide" stuff when I stole the photo from the web site.
He wanted to know if her thyroid had been high before. All I knew is that she had complained about gaining weight even thought she was dieting. That's another symptom of hypothyroidism. My only knowledge of that is Emily, my late Golden Retriever. She had hypothyroidism.
They are giving her meds to counteract the high thyroid count but the impact of them is cumulative so it will be a while until we see any change in her behavior.
It was hard for me to believe that the person I talked to yesterday was just not there today.
It was hard for me to leave, but I do feel like the psychiatrist will be her advocate and that is comforting.
We did have some wonderful experiences today. We watched a butterfly emerge from its chrysalis. At first Kerry and I thought it was just part of the bark of a tree, but then it started to move it's wings in the sunlight. Meanwhile down below the tree the Juncos were stirring up the dirt to find seeds. It was a nice way to counteract what was happening upstairs in Vicky's room.
The other experience is the free lunch at the hospital. It's sort of like going through the cafeteria when I was in grade school. The ladies wear hairnets and serve from a steam table. Today's menu: barbecued riblets (could have fooled me; they looked like those Vienna sausage cut in half), cooked carrots, mashed potatoes, salad, cream of broccoli soup and banana cake with white frosting. All of this is free. There are also soft drinks and coffee. The Minnesota seasoning is on all tables: ketchup.
You know how cops get free coffee in a lot of places, well the mail people and UPS/Fedex drivers stop at the hospital for lunch each day.
So we are home now; it was a long flight. Right now it's 1:30 a.m. but even though I'm tired I still want to do some research on hypothyroidism.
So that's the new from Lake Woebegon. It was very hard to leave her.
Wednesday, April 16, 2008
When Kerry and I got there a little after 1 she was raring to go; she wanted to know when her program to make her better was going to start. She was a bit disappointed that they had to do a day-long assessment before anything would start.
She was a lot more lucid than I expected. When she's tired, so is her brain. Right now she's in the Special Care Unit, which is sort of like an ICU. She will probably go to her own room on Thursday.
She was talking a blue streak yesterday. I guess she's trying to catch up. After all, she didn't say much for about seven weeks.
Yesterday she asked me if she almost died. I said, yes. That was the end of that discussion.
All of her vitals were good without use of the ventilator.
Kerry and I fly home tonight; I would love to stay and watch her progress, but we have company coming on Saturday night, and I have a quilt applique class on Friday morning. It is easier to leave when I know she is so much better and has made it out of the ICU. No going backward now.
The ICU nurses want to see her again when she can walk in under her own power with a big smile on her face.
Monday, April 14, 2008
She was lucid when I got there about 12:30 today; but it was pretty much down hill after that. When she gets tired so do the synapses in her brain. She got especially angry at Neil and threw him out about 5 so we left and went home and had dinner at a reasonable hour.
I made something I hadn't made in ages. I dipped the chicken parts in raw egg and then rolled them in Panko which is a Japanese bread crumb. Bake it plus yams and then added a sauce made up of apricot jam and Dijon mustard warmed on the stove. Add coleslaw and it was a pretty decent dinner.
She was very tired yesterday. They did have her in a chair for two hours in the morning but then her butt started to hurt so they put her back to bed. She was a lot more lucid than she had been Saturday night. Even commented on the color of my blouse; she said it was a good color for me.
I'm going back to the fabric outlet we visited last week. They have some amazing prices on dupione silk so I'm going to buy some. That's my reward for all the hours in the hospital. I think it was good for Neil to have stayed home yesterday. He's at work right now, Vicky is having dialysis and Kerry is asleep. The coffee is ready so I'm off to get something warm for my tummy. Again, thank you; your prayers, positive energy and good thoughts mean a lot to the family.
Sunday, April 13, 2008
The best part, however, was the fact that she got to have the device on her trach that allows her to be heard when she talks. The respiratory technician said he didn't think he could get one for her. I played on his guilt by saying it was her birthday and it would be so great if we could hear what she had to say on this important day. I also promised birthday cake. A short time later he told us she had the device on and could talk. What a great present.
When she was asleep we went into one of the family rooms to have cake and soda or pop as it's called here.
They finally took her for the CAT scan at 5:40 p.m. rather than 11 a.m. She wasn't gone long but they were able to drain 80 ccs of junk from the area around her spleen and they put in a drainage tube on each side of her belly to take more stuff out as it accumulates. The stuff they took out has gone to be cultured. We should know something by Monday afternoon at the latest. I hope this will help them get the right antibiotic for her. Then her infection will go away along with her fever and she can transfer back to acute care at Regency.
She wasn't nearly as lucid after the procedure. As always she asked to go home. I told her she wasn't well enough and she asked, "well then where will I sleep tonight?" Her brain is good some times and other times it's just very confused. The nurse was going to give her something to help her sleep.
Today Neil is going to stay home and get ready for our hot dog roast tonight. When Vicky and I were growing up we always roasted hot dogs in the family room fireplace on Sunday night during the winter. We also had baked beans and potato chips. So Neils going to gather all that good stuff so we can have another Sunday night hot dog roast. Afterall there is still snow on the ground so it must be winter. There is nothing better than a hot dog roasted over an open fire. The good part is the roasting sticks we will use came from our dad's house, so they are the ones we used as kids.
Kerry and I will have hospital duty today so I'd better get ready. Thank you again for all your prayers, good energy and positive thoughts.
Saturday, April 12, 2008
We are taking a sheet cake (store bought..no I'm not baking) to the ICU staff so they can enjoy it in their break room. We will bring another cake to Vicky's room for the family to have. No candles, but we can bring Mylar balloons.
Yesterday was a good day for her. She was much more lucid than the day before. Dialysis was first up, and she finished that without any problems. Then we had the best gift; they put the oxygen dome over the trach in her throat and turned off the ventilator. She was breathing on her own. We left at 7 last night and she had been breathing on her own for five hours.
I spent a lot of time yesterday educating her nurses on the importance of giving her the anxiety medication on time. They were quite late on a dose and poor Vicky suffered for it. Yesterday I spent some time telling her about all the machines around her. Don't know if any of it stuck but I think it's less fearsome when she knows those things. I also read her the numbers off the monitor, particularly when she was off the vent. I'd read her heart rate, blood pressure, oxygen level and number of breaths per minute. Then I would tell her that those were perfect numbers, which they were.
The doctors and Neil met to talk about the spinal tap and decided against it for now. Instead they are going to aspirate some of the liquid in her belly that has accumulated around her spleen. In the search for the cause of her on again/off again fever plus high white cell count (25,000 yesterday) they believe that liquid might be the source. They want to get some of it, culture it and then see if they can determine a better course of antibiotics. That's happening this morning at 11 a.m.
It's still cold and miserable here; there's still snow on the ground and the wind is blowing. Vicky's son Adam has been working near Duluth; he barely made it home yesterday due to blizzarding conditions. Adam told me that Lake Superior and the Duluth area are called the "Norwegian Riviera." That's probably another Ole and Lena joke. Those jokes are quite popular here with the folks who have spent their lives in the cold Midwest.
Well, I'm going to go scramble some eggs for the men and then head to the store to get supplies for the party. Thank you once again for all your prayers and good thoughts. You are wonderful, caring people. We wouldn't be where we are without you.
Thursday, April 10, 2008
We had highs and lows today. The highs: her blood pressure and oxygen level are great. She is breathing much slower than yesterday.
The lows: her anxiety attacks take a huge bite out of her life. They are finally giving her atavan and dilaudid on a regular basis to manage the attacks rather than dealing with them after they happen. Those attacks are brought on by coughing which causes the pressure to change on the vent which sets off alarms. Then the nurse suctions the vent; she doesn't like that at all.
The EEG and MRI results are in; both are worse than they were last time. The neurologist, Dr. Fred Taylor (I like him because he carries a black bag like the doctors of old carried when they made house calls) said her brain is functioning very slowly. He talked about her cortex, which is the stuff that looks like cottage cheese. He doesn't know why. He has recommended a spinal tap or as they call it, a lumbar puncture. He says she isn't critical and her platelet count is good so the risk is low. That will be done tomorrow.
The troubling part is that her temperature is normal but her white cell count is even higher than the 19,000 yesterday. At some point they may have to do a bone marrow test to find out why.
Today the ICU doctor was talking about getting ready to transfer her back to the critical care facility. The neurologist seemed pretty surprised by that. They did have her sit in a chair today for nearly an hour. She also got her hair washed. I think she really liked that. The EEG people had put a bunch of gunk in her hair for the test. Of course they didn't stick around to clean her hair afterward.
So, I have no idea what tomorrow will bring. I do like the fact that people talk about her as non-critical. That is wonderful. Meanwhile we are planning her birthday party in ICU. There will be a cake and Mylar balloons but no lighting of candles (oxygen in the area could ignite the whole ICU). So that's it for today. I'm exhausted but feel good about being able to comfort her.
The strange thing is that her temperature is normal but her white cell count as of yesterday morning was 19,000. A high normal count for you and I would be 11,000. He said normally you would think of cancer but not with what has happened to her. He kept using the word "sepsis."
She opened her eyes and smiled when she saw me. Her anxiety level is way over the top. She can't talk right now because she is on the vent, but I could read her lips, "I want to go home." I wish I could just climb into her bed and hold her but there are far to many tubes and lines to make that possible.
I discovered that putting my hand on the top of her head near her forehead and holding her hand is comforting to her. Then I tell her that she is safe. Usually she falls asleep in a few minutes. I'm glad she is awake, but it is so hard to look into those beseeching eyes and know I can't do what she wants.
She has been coughing on the vent which sets off alarms and then the nurse comes in to suction her out. She hates this. Yesterday her face turned all red; I thought she was going to spring out of the bed with anxiety while they were suctioning her. The respiratory therapist said that Vicky pinched her when she did it a bit earlier.
Her heart rate is still in the low 120s and they are having trouble maintaining her blood pressure due to the Atavan they are giving her for anxiety. Her oxygen level, however, is 100 percent. That is great.
So we are heading to the hospital in a little bit. She has the MRI and dialysis this morning so we don't want to get there too early. She is usually pretty tired after dialysis. They tried to do it yesterday, but about an hour into it her numbers started going down so they stopped. Her urine output is about 10 ccs an hour, which is better than the 10 ccs a day she was doing. Also, the color is better.
My job today is to wash her hearing aide mold and get it back in her ear. Neil tried yesterday but couldn't get it in; we could tell he were hurting her. I talked to my brother last night. He wears a hearing aide in addition to his cochlear implant. He told me to put a small bit of Vaseline in her ear so it will slip in easier. I'm going to try that today when she's awake.
It's supposed to snow today. In fact they are predicting a blizzard. Mother Nature obviously doesn't know it's April 10.
Tuesday, April 08, 2008
The heart quilt I made is her birthday gift. I'm hoping we can hang it on the wall of the ICU and then the acute care facility.
Sunday, April 06, 2008
Last night they did a CAT scan and MRI. This morning we found out they saw a lump on her liver. They will do an ultrasound today or tomorrow to get a better look at it.
The whole family is feeling pretty discouraged. This is a giant step backward. Keep praying and doing anything else that will send her positive energy. She really needs it now.
Friday, April 04, 2008
She recognized our brother this morning but then later in the day asked who he was. Worst of all she asked my brother who the other man was; it was her husband.
Today she was breathing on her own; they closed up the trach with a little thing sort of like a cork. She could speak through her mouth rather than through the amplifier they had on the trach. She does not have any IVs, which is fabulous and she can move her arms. When she needs meds they are either given by injection or orally through her nasal tube.
Big event tomorrow is having her sit up on the edge of the bed and dangle her feet. I hope they hold on to her because she tried to escape once before.
My brother says it's much harder to be with her when she is awake. Today she asked about people who have been dead for more than 25 years. When told they were dead she said she remembered that.
I really want to be there with her, but I'm worried about how to deal with some really hard stuff. I'm considering bringing some family pictures so we can talk about them. I want to find a way to have a dialogue, limited though it may be, with her rather than just re-identifying who I am.
Once again, Kerry will be there to help me through this process. Vicky really likes him so I'm hoping she will recognize him.
Thursday, April 03, 2008
Last night, Dr. Marino gave me the good news that Vicky can be moved to Regency, the acute care facility. This morning, I got the call from the social worker at Methodist Hospital that it will happen around noon (CDT). She will have spent 58 days in the hospital, 53 days in ICU. She has been very anxious to leave the last couple of days.
I will let you know how the move goes. Thank you all for your prayers, well wishes and help (food).
Tuesday, April 01, 2008
The last cruise I took was in 1974. I was married to my ex-husband. I'm not sure how we ended up on the cruise, but it left from Miami and cruised some great spots in the Caribbean, well except for Haiti. I think we were the youngest people on the cruise by about 30 years. There was a priest at our table. Not sure how he got there.
Last Christmas we talked about doing something really different in 2008. Kerry's nephew and his wife were in Cancun; we all said, why aren't we there too?
I have been to all of the cities on the cruise just not on a cruise ship. Doesn't matter, I will enjoy it all and bring along my Imodium AD and Cipro just in case. In fact my ex-husband and I spent our first honeymoon in Mazatlan. He got really sick. The second time I married him (slow learner) we honeymooned in Cabo San Lucas.
Now Kerry and I will be able to enjoy the wonderful cruise and the places we will stop. I woke up this morning not even thinking about Christmas and here I am writing about a cruise. Just shows you never know what the day will bring. That's the great thing about life.