Monday, June 30, 2008
Sunday, June 29, 2008
I plan on looking at as many old pictures of her as I can in the next few days. I want to remember the beautiful woman that I grew up with, not the frail little woman that she was in recent days. She took great pride in her ability to play the ukulele and play with a bolo bat (you know: the wooden paddle with the little ball attached by a long rubber band). I think she was the only person I have EVER known that could keep the ball bouncing off that paddle for any length of time. That is the woman that was my mother.
Saturday, June 28, 2008
At the present time, Mom's liver function and kidney function are questionable. She's jaundiced and starting to get puffy. We're hoping her stitches and staples will hold in her fragile tissues. She hates having her hands restrained, but they are afraid she'll pull something out that can't be redone. I hope things can turn around but I don't know. Keep us in your prayers.
When I got to the hospital at 8 am, Dr. C (my favorite surgeon) wanted to take a look inside Mom's stomach to see what exactly was going on. She was stable enough for an EGD by then. Amazingly enough, they were actually doing scope by 9! (Here's what I love about small towns: the anesthesiologist's daughter was on the quiz bowl team with my eldest, one of the nurses' daughter graduated with the eldest, another nurse is a friend of mine from church, and have I mentioned that Dr. C's son was in L's class this past school year.)
In 10 minutes, Dr. C was out telling me the bad news. Most of Mom's stomach was necrotic (dead) tissue. They needed to remove the dead tissue, and fast. I wondered if she were strong enough for surgery and he said there was no choice. She was much more stable by then than she was when we first brought her in, but this was life-saving surgery and without it, there was no chance. He drew me some pictures and was on his way. Then he turned around and said, "While you're praying for your mother, pray for her doctor, too." You got it, dude!
The surgery seemed to last forever, well from about 10 until about 3. The doc came out and told me just how much of her stomach they removed and what they had to repair in the process. She'll be eating just a few bites at a time for the rest of her life. I got to go see her at 5. She had to big oxygen mask on (surgery patients tend to breathe through their mouths so the nasal O2 just doesn't get it done) and her hands were restrained. Because they had to remove so much of her stomach there wasn't much wiggle room for the tube that was aspirating through her nose. NO ONE was allowed to touch it and they were afraid she'd do some real damage to their work. She kept saying, "I need to get up!" How do you convince your mom that even if she weren't attached to the bed, she couldn't move much under her own power?
When I went back at 8, they had taken the big mask off and she was back on the nasal O2. I must say that for as much surgery as she had just undergone, she was more aware of her surroundings than she has been for the past week. I just hope that all her tissues are able to hold the stitches and staples until they heal. The steroids that Lupus patients have to take tend to break down the tissues: thin skin on the outside and just as thin for muscles and organs inside. I am encouraged by my visit last night. I'm hoping to have a good talk this morning.
Thursday, June 26, 2008
What if my friend hadn't prayed especially for me and Mom that day? I don't want to know... don't want to think about the possibilities. The fact is, she did, and God heard her prayer. He sent a nurse to our house that day and she helped me get Mom into the car and to the hospital. He had a doctor waiting in the Emergency Room who ordered a test that showed just what the problem was. He had a surgeon there who was willing to look at things in a non-surgical way and suggest a different treatment. He took control of a situation that I had no control over...because one of His children listened to His call to lift up the name of a friend. There were probably lots of people praying for Mom and me that day. She is the one I know that did for certain. When the Lord puts someone in your head and heart, stop and pray for them right then. You don't know the power that you might be releasing for that person to draw on.
Mom is still in ICU. She looks very fragile. She speaks in a whisper. She is so weak. But she is still here, still missing her kitties, still worrying about my family and my brother. I hated to leave her there alone tonight. I know she is in good hands, but they are still strangers' hands.
In Mom's fragile state, I'm not sure she could survive surgery right now, so this option definitely seems more workable to me. Right now, they are still pumping out the stomach contents (yuck, I know!) and are feeding her intravenously. One bottle she gets every day: I think it's dextrose- it looks like regular lemon-lime gatorade. Another bottle she'll get every 3 days: it looks like milk and is lipids-fats & stuff.
Here's my question for any medical folks out there: Since she had a this obstruction, was she really getting any of the drugs that she's been taking for the past several weeks or are they also being pumped out with everything else? I don't know how drugs are absorbed into your system. If she wasn't really "getting" these drugs, then she has gone "cold turkey" off the steroids not once but twice. That scares me.
Wednesday, June 25, 2008
More info to follow when I have it.
P.S. The poem I posted yesterday was written when I was young. Mom wasn't a ballerina, but she was a dancer. The reason she wasn't a Radio City Music Hall Rockette is that she wasn't 5'3" tall. They have a height requirement.
Tuesday, June 24, 2008
I haven't been just sitting around doing nothing, though. I think my bathroom floor had been scrubbed about 7 times (enough said!) I have washed and folded and put away at least 2 or 3 loads of clothes every day. I even cleaned the ceiling fans in the living room, which was not easy since they are hanging from a 10 foot ceiling.
I went to the grocery store last night. Mr. H wanted to come with me, but I was so afraid to leave Mom with just the girls, even the eldest. She can't really walk that well, even with the walker.
I made 2 concessions last night that I really didn't want to make. 1) I stopped by the church and borrowed a wheel chair. 2) Mom slept on the couch last night instead of in a bed. I guess I didn't want to depend on the chair, but my back and fear of letting Mom fall pushed me in that direction, that and the fact that Dr. T thought it might be a good idea. The past few nights it has been really hard to get Mom out of the bed when she calls (2 or 3 times every night). She can't roll over and her arms get in the way, and I just couldn't do it any more. Actually, on the recliner of the couch last night, she didn't call at all. I actually slept pretty well. It's a good thing, too. Today has not gone well. We'll see what the nurse tells us.
I thought that was the nurse driving up, but it was the UPS man. He brought the gasket for the freezer. I know what Mr. H will be doing tonight. Hooray!
I remembered that I wrote this about Mom a long time ago. She was a dancer since she was a little girl, used to win competitions on the Coast.
all much larger than
but all far less important than
Human motion perfected.
The supreme union
of power and grace.
Space is the canvas
of her creation:
seeming to fly
yet caressing the stage
upon which she performs.
She is a dancer,
a little girl's dream,
July 24, 1980
Thursday, June 19, 2008
The lady from Medicare was GREAT! She went through Mom's medications with me, helped me find a Rx plan that covered them all and then set Mom up on a new one. She was so helpful and friendly, I was impressed. I have plan numbers, confirmation numbers, and a few numbers that I'm not sure what they are, but by July 1, Mom will be covered here. I've changed her address with Social Security (which Ms. Medicare told me was important to have the address in sync) and I did that ONLINE, lest I accidentally get that other woman again.
For a day that started out with 1 hour of sleep, I feel I've done a whole day's work.
Wednesday, June 18, 2008
Tuesday, June 17, 2008
These are some of the pictures from my grandmother's box. The first two are of Nell and Floyd Jackson, my dad's parents.
The picture of all the men has the husbands of 5 of the Leonard girls, my grandmother and her sisters. The youngest wasn't married yet, so her husband wasn't "in the picture" yet. The little boy is my dad, about age 3. The writing on the back of the picture says "at the park."
The pink picture is my mom and dad going to their prom in 1956.
And there's another picture of Floyd & Nell.
I think the last two are my favorites. The Bunny in Boots is my brother and I am Cinderella. I noticed I must be a German princess because of the necklace I'm wearing. I love this picture of my grandfather. Check out his collar. That look on his face never changed.
Sunday, June 15, 2008
Saturday, June 14, 2008
I got to Camp Garaywa just in time for the closing assembly. I got to hear the Girls In Action song and the motto and the pledge and the scripture verse. There was a PowerPoint of photos of the girls doing camp stuff. Then the different groups got up to show us what they worked on this week. The singing group performed Steven Curtis Chapman's "Dive." The drama groups each gave us a skit. The puppets performed a song, the title of which I can't recall, but I knew it very well. Then L's group got up to show us the song they learned to sign this week. It was Chris Rice's "Untitled Hymn."
Weak and wounded sinner
Lost and left to die
O, raise your head, for love is passing by
Come to Jesus
Come to Jesus
Come to Jesus and live!
Now your burden's lifted
And carried far away
And precious blood has washed away the stain, so
Sing to Jesus
Sing to Jesus
Sing to Jesus and live!
And like a newborn baby
Don't be afraid to crawl
And remember when you walk
Sometimes we fall...so
Fall on Jesus
Fall on Jesus
Fall on Jesus and live!
Sometimes the way is lonely
And steep and filled with pain
So if your sky is dark and pours the rain, then
Cry to Jesus
Cry to Jesus
Cry to Jesus and live!
O, and when the love spills over
And music fills the night
And when you can't contain your joy inside, then
Dance for Jesus
Dance for Jesus
Dance for Jesus and live!
And with your final heartbeat
Kiss the world goodbye
Then go in peace, and laugh on Glory's side, and
Fly to Jesus
Fly to Jesus
Fly to Jesus and live!
I have loved this song since the first time I heard it. A few years ago it took on new meaning for me. My high school buddy who was also my college roommate passed away. This song was sung at her funeral and I understood every word.
When I heard the words to this song again yesterday, and saw those beautiful girls saying the words in sign language, I suddenly had something that I had been missing lately ... worship. It's something that I guess I take for granted. I go to church every Sunday (morning and night) and every Wednesday night. I sing with our praise band. But do I worship? Not every time. But when I don't have the chance to share the worship of my church family, I feel it. I feel the vacuum that it leaves behind. I want it. I need it. It's the way God made each and every one of us.
Friday, June 13, 2008
It was full of old photographs as well as some not so old. There was a little photo album with "Grandma's Brag Book" on the cover. Inside it, the first picture was of me, probably just a few months old, in my birthday suit. Mom and Dad obviously didn't have a bear skin rug. I was on the changing table. There was my first Christmas, several Olan Mills portraits at various ages, some school pictures of some of my aunt's children, a wonderful picture of Paw-paw Floyd, and a lady that I vaguely remember as my great-grandmother Leonard (her last name, I'll have to look up her given name.)
There were prom pictures from 1956 of my mom and dad looking sharp: he, in a white dinner jacket sporting a red carnation and she, in a light colored lace and net creation that probably had hoops under it. What a beautiful couple!
There were pictures even older than that...pictures from the 1940's of my dad as a little tyke. I think my favorites have to be of Nell and Floyd together. You can tell how they felt about each other by the way they touched, the way his arm wraps around her, the way her hand is on his shoulder. I wish I had known them as young adults. Paw-paw Floyd was a joy to be around when I knew him. I bet that was nothing compared to him in his 20's. What a looker!
There were also pictures of my brother and me growing up: in Halloween costumes, band uniforms, Easter outfits, opening Christmas presents. I found a blackmail picture of my brother: k he's about 4 years old, wearing a pink bunny suit, complete with ears. To top it off, or should I say at the bottom of it, he was wearing cowboy boots.
Most recent were pictures of my eldest as an infant; just her, none of M or L or my brother's boys. "Mo" Nell, as she wanted the great grandkids to call her, lived to see all 5 them. Ours is a small family. My dad was her only child; my brother and I, her only grandchildren; his 2 boys and my 3 girls, the only great grandchildren.
Some of these pictures I had seen before, but others were new to me. I'm so glad I found them. When I get back to my office, I'll scan and post some of them. The bunny in boots will definitely make the cut!
Wednesday, June 11, 2008
He is a true misanthrope. When we come to visit, we don't see much of Otis. Ocassionally he'll sneek through the living room late at night, when he thinks we're not watching. I discovered once when I was visiting without the girls, that he will approach me when I'm sitting down. He'd come to my hand and let me touch him, even rub his ears. Very rarely, he'd jump up onto the couch where I was sitting and lay down beside me. I experimented and found that I could approach him if I crawled. Go figure! Since I've been here so long, he's gotten used to me. He'll regularly walk up to me, but still only if I'm sitting. And he doesn't run away to another room when I stand up... just to the other side of the room.
He has a history of running away. In the past he has disappeared for days at a time. Last year, he left and didn't show up in a few days like he always has. A week turned into a month missing. Mom was crushed. She loves cats and Otis especially. I think she feels that they need each other. Well, even I had to admit that this time, he was gone for good. She talked to her vet and they found Miss Kitty for her. She is very personable, loves people, even little girls. Miss Kitty had been with Mom for about 2 weeks when they had a surprise visit. Mom went out to get the paper one morning and there he was: the prodigal cat, not to be confused with a Jellicle Cat.
Jellicle Cats are black and white,
Jellicle Cats are rather small;
Jellicle Cats are merry and bright,
And pleasant to hear when they caterwaul.
So now Mom has 2 cats: one who is merry and bright and the other likes to caterwaul. Maybe they are Jellicles after all.
Earlier this week I had decided to go home Friday and take Mom with me. Mr. H and the girls are coming and we'd all go home together. But I haven't heard anything from Mom's physical therapist. Mr. H had a suggestion that maybe M &L could stay up here with me for another week then we could come home. I wouldn't mind them being here. I haven't seen M or the eldest in almost 2 weeks.
I know that sometime I need to get back into my office and catch up on some things. KK is taking care of some things on an emergency basis, but the longer I'm gone, the more there is that someone else has to do and I have to catch up. I'm so thankful for the place I work and worship.
Wow! It's coming down a gully washer outside right now. That's what my Grandma Louise used to say. It hadn't rained at my house for several weeks before I left. M told me there was a thunderstorm there earlier this week. This is the first time I've seen rain since I've been at Mom's. It's coming down loud and hard. I'm glad I went to the store earlier today. I'd be soaked if I went out now. Mom's cat, Mr. Otis, is roaming around moaning. It is the strangest sound. He likes to make that noise at 3 a.m., too. Right now, he has climbed up on the little table by the front window and used a paw to part the blinds so he can look out at the rain in the front yard. We can call him Gladys Kravitz.
I feel so much better about things today. Yesterday was tough. Mom was still dehydrated when we got to the doctor's office. They decided to give her the steroid she usually takes in pill form by IV that day to get her fluids up. They took her to what is called the infusion room. That place sort of creeped me out at first. It's a room full of recliners and IV poles. When we got there, about 6 people were hooked up, some reading, some napping, some watching TV, all receiving some sort of IV treatment. Then the nurses started looking at Mom's arms. While she was in the hospital, she had about 5 or 6 different IV sites. Then there was the unsuccessful blood drawing attempt at her dr.'s office on Monday, followed by a trip to the outpatient department at the hospital, where they were successful. The nurses in the infusion room do IV's ALL day long. They are truly the trained professionals. It took 2 of them about 15 minutes before they found a vein they could use. I was in tears. I didn't want to leave her, but when they told me it would take about 3 1/2 hours to finish, I knew I needed to go get some lunch.
Everything hit me hard about that time. I sat in Quiznos and cried on the phone to a dear lady who just listened. I hadn't planned on telling her too much; I was calling to pass on info about L and camp, but it all came pouring out. That Quiznos is close to St. Dominic's and UMC. They probably are used to crying folks.
Before we left the doctor's office, I was armed with information about how to give Mom her medicine the most efficient way, and today, the home health care nurse had some good suggestions, too. I'm armed with information and a plan. Let's roll.
Tuesday, June 10, 2008
Once she was in the wheelchair, all the ladies thanked me and went inside to consult their doctor. I picked up my stuff and started walking across the parking lot. Suddenly, my heart broke and I was in tears. I realized how effortless walking is to me. I don't think about it. I jump in and climb out of cars and trucks and vans without a moment's thought. I do it without the aid of a cane, walker or wheelchair. I don't think I've ever considered what a blessing that is... what a gift good health is... even relative good health.
My mom has had lupus for a long time, but until a few months ago, she was relatively healthy. She could eat what she wanted, when she wanted it. She could get up from a chair or the bed without assistance. Today, everything seems to make her sick and I have to help her up from her chair and her bed. She uses a walker to move around her house and it's wider than her bathroom door, so that presents a problem.
There are so many things that we take for granted every day. I'm thankful that I took time today to look at those things and understand Who gave them to me This Day and Every Day that I have them.
Wednesday, June 4, 2008
And my children: My eldest has taken responsibility for making sure the younger ones are where they need to be, that they have what they need for what's going on at the moment. So many young adults are so focused on themselves that they don't see any needs at all around them. I have always been able to trust her to do the right thing.
M is in a hard place. During the day, she has seniority, but in the evening, she gets placed in the "children" catagory. Being 13 is one of the hardest things there is. Yet I know that she is a steady influence in the lives of some other 13 year olds who don't have much that is steady in their lives. She is faced with so many choices at this age, but I trust her to make the right choice.
And L . . . She could have pitched a fit about my missing her "big thing." Instead, she tried to make me feel better about it. She didn't want me to feel bad, so she found a "next best thing" for me to look for. She wanted to protect me from the disappointment I felt.
There is no PERFECT family. Families are made up of human beings who, from birth, are imperfect. Yet if we make the CHOICE to BE a family, to put the family before ourselves, to love each other - no matter how much we irritate or disappoint - then we can face the challenges the world throws at us. We can do what needs to be done without worrying about things falling apart, because we know that our FAMILY is there with us, cheering us on, wanting what is best for us, even if there is a price they may have to pay. That is what real families are all about.
Tuesday, June 3, 2008
She'll probably be here at least the rest of the week. But the doctor seems to think she'll be at least as fine as she has been up until recently. If she's still in the hospital over the weekend, I'll try to go home and come back when she gets out. I know she'll need a bit of help for a little while when she's home.
My mom has always had problems finding veins in her arms. She tried to give blood once and they couldn't get any out. They have had to re-do her IV's everyday. Her poor little arms are various shades of blue, black and green, speckled with little red dots. Because she's been on a blood thinner to prevent possible clots, her skin is very fragile. When they took some tape off this morning, she started bleeding. I got some baby lotion to rub on her. The hospital lotion smelled really good, but I was afraid it would sting. Today, the doctor decided to put in a PICC line. It's a Peripherally Inserted Central Catheter. It goes in at the bend in your arm and the tip ends up close to your heart. It can be used for delivering drugs and drawing blood and can stay in place for up to 6 months.
Dinner was just delivered. Tonight was pasta chicken salad. This has got to be the biggest plate of food I have ever seen on a tray! Honestly, there was enough food in just the salad to feed a family of 4! And that was just the entree'. Rutabaga (she ate all of it *yuck*), soup, au gratin potatoes, cobbler, roll and crackers with butter. What a spread!
Sr. Mrs. H called me today and told me how into character L was that night. She was a pirate called Josie Batista.
The vest she is wearing was a Halloween costume M asked me to make a couple of years ago. She and her best friend picked out the material. She described it to me and sent me to Hobby Lobby to get it. IT WAS $19/YARD!!!! Well, at least we're getting our money's worth. I think the blouse belonged to one of my grandmothers. It has been in the girls' dress-up bag for years.
The large group picture is taken on the stage where we have music for VBS. The tropical VBS theme worked really well with the musical setting.
Monday, June 2, 2008
And now I feel much better...because I have information and a basic understanding of my mom's medical condition. I can see the tunnel now and there is a light at the end of it. Earlier this week I was in the dark. I couldn't tell where the tunnel was, much less glimpse the light.
My mom has lupus and has had it for many years. I'm a bit familiar with the visible effects it has on her, but no idea of the causes or internal effects. I learned something today: if you have lupus and don't take your steroids, you could die. Your body will attack itself and your blood cells will dissolve and your muscles (think "heart") will quit working. Mom didn't feel well enough to go to the doctor so the doctor couldn't renew the Rx she needed. Steroids require close supervision: no doctor visit=no refill. We think she's been several months without the steroids, so it's been a downhill spiral. Now I know what we have to do. We have to keep up with doctor schedules.
I love understanding a situation. With understanding, you know why things have to be done a certain way. It's easier to remember to do something if you know why it has to be done.
Sunday, June 1, 2008
2. every empty hospital room is an answered prayer for someone...one day we won't need hospitals because we will have been Wonderously Healed by the Great Physician.
3. When you go from a clear liquid diet to just a liquid diet, they include butter on your tray. I'm not sure if it goes in the soup or in the sherbet or maybe in the tea... (L would just eat it with her finger!)
4. A familiar face from home is a wonderful thing. Thanks, Ronnie, I loved the song about the big top tent.
5. Hospital gowns come in one size: 1 size fits none.
6. Daughters who are willing to fill in for a missing mom are a blessing...as are friends who are willing to step into unfamiliar shoes. Thanks Andra and Kelsey.
7. I almost forgot: NURSES ARE BLESSINGS FROM THE LORD! thanks to Renee', Deanna, Pat, Ashley and all the ones whose names I don't know.