Day 2 post-op

My gorgeous angel-girl, Cassie, had a long hard day. After being awake much of the night, once the anesthesia had worn off, mom and dad didn't get much sleep either. Grandma showed on the scene about 10:30 am and gave them a much needed break from being the person at the center of Cassie's universe. After Cassie discovered she was hooked up to a morphine pump, and that pushing the button was a way to fight back against the pain, the day progresses with a bit more humor. She wanted to hold the button, which mommy and daddy had been pushing for her originally. She knew there were several things hooked up to her that beeped periodically when they needed attention, like the infustion pump controlling the antibiotics, and the O2 monitor attached to her finger. She also knew she couldn't exactly control those beeps, although breathing deeper could make the O2 one stop beeping once it started. We were talking about the beeps, and other odd noises in the room and coming from the TV speaker.




Well, mom and dad were both on laptop computers and checking on various things, not really paying attention to Cassie and grandma. Suddenly the morphine pump went Beep-Beep, and daddy said, uhoh what was that. Cassie said, "Daddy, it was me." She loved the sound it made, but she also loved the fact she could control or at least effect the pain level she was experiencing. We talked about her pain, and that it would get better over the next few days. The nurse came in and wanted to move her to change the bedding. Cassie didn't want to be moved, she was very afraid of what it would do to the pain level. I tried to explain to her that yes, it would hurt worse for a minute or so but it would get better fast. I don't know whether she really believed me, but she knows I won't lie to her about things not hurting when in fact they do. So she agreed to being picked up if it meant she could lie in mommy's arms for a while. The nurse and I picked her up and gently slid her into Tess's arms, which was no small feat. She has 4 tubes coming from various location in her abdomen, and each tube is attached to a different drain pouch. They are each clipped onto her sheet when she is in bed, but had to be moved and reattached to her diaper for moving her. She is also attached to a couple of different IV lines and infusion pumps, and a picc-line. So it was interesting trying to make sure all the things moved in unison and nothing pulled on her tender little belly. She slept on mommy for nearly an hour, then wanted to go back to her bed. The photos on today's post show her smiling at the joke of her being the cause of the beeps, as well as a couple of shots of her various hoses and one special one of her just after being moved with mommy. She was still hurting there, but wanted her photo taken anyway.

Once she got back to bed, my being there gave Tess and Brian a chance to eat, and just breathe without worrying about her. They had a leisurely lunch break, and returned in time to find Cassie and grandma both asleep. Like I said, it was a hard day, but the fact Cassie was finally asleep meant we were making progress. Not too much later she woke up and wanted to paint, I know at last count she had completed four paintings and was looking forward to doing more tomorrow. She won't get anything to eat for at least another day or two, and won't get solids for about another week. This is probably the hardest part of all since she has always loved her food, especially her pancakes and scrambled eggs. She is getting nothing by mouth at this point in time, and didn't say a thing about it today. She is so tiny, I worry about her losing weight. She barely hits 30 pounds and at 6 years old there is none to spare. She is quite tall, but has always been very tiny due to her being such a busy girl. I know she will rebound quickly once she is allowed to eat, but until then we just keep hoping and praying she won't lose too much.

Post Surgery

Well, yesterday was brutally long and emotionally and physically exhausting for all of us. It was also a rousing success. The urologist we met with after her surgery said it was very successful. Her appendix was used to create new "ducts" from her kidneys to her bladder, and from her bladder to the outside of her belly. A piece of her small intestine was used in augmenting the size of her bladder. She has a small vertical incision below her belly button, and 5 tubes coming out of her belly in various places. By the time she comes home she will only have 3.

She won't get anything to eat for at least 2-3 days, and to start of course it will be clear liquids. For a girl who is all about the food, especially pancakes, this is going to be the hardest. She hates the broth they tried to give her the day before surgery, the only part of her tray she found edible was the jello and the apple juice.

Last night she got to video-chat with her sister, but can't sit up well enough yet to see the laptop screen, so mom and dad had to each take a side of her bed and hold the laptop so she could see and be seen. She was very happy to connect with her big sis, her cousin, and her aunt. I am heading off to see her on her first day post-surgery. She is a trooper, and asked if she could go home yet last night within an hour of awaking from the anesthetic.

Cassie and her impending surgery

My littlest granddaughter, Cassie, the one with Spina Bifida will be having surgery next week. On Monday she will have a pic-line installed so they can easily infuse her without having her arms strapped to something. Since she uses them as her mobility, the doctors actually get it this time to put the IV somewhere else.

She is having bladder augmentation, which will expand the size of her bladder, and while they are at it, they will put in a port next to her belly button for self-catheterization. She is pretty excited about it. She knows she has to have an operation, and that it may cause her some discomfort. But she also knows she will be more grown up when it is over. At least that is her take on it right now. She will be in the hospital for at least a week, and out of school for up to six weeks. The surgeries require the coordination of 4 different doctors schedules, and a block of time of up to 12 hours. Her urologist, proctologist, neurosurgeon and pediatrician will all be in the OR. The neurosurgeon will be there just as a precaution since he oversees anything to do with her shunt, and it empties into her abdomen.

The proctologist will resection her large and small intestines for expanding her bladder size, and adding the belly port, the urologist will actually put the parts together and hopefully it will prevent her left kidney from failing due to backflush. The other doctor who will not have to be there for an extended period (doctor #5) will put in a special line for flushing her bowels from the top once she has healed from her other surgeries. This is another of the big girl things that is happening. I am sure if you look up Spina Bifida you will find references to exactly what I am talking about.

Suffice it to say, Grandma, Mommy, Daddy, Step-daddy and sissy are scared half to death just waiting for the surgery. All positive energy, prayers and good thoughts are more than welcome. I'll try to keep you posted post-surgery.

Hello again

Thought I would pop in long enough to say I am no longer a moderator for one of my favorite facebook games, but am still enjoying my facebook time. I also have a boyfriend / new love in my life. No details except to say he is kind, gentle, sweet, amazing and someone worth risking my heart for.

I was injured at work in July, and haven't worked much since then. The first 6-8 weeks I was unable to return to even light-duty work, so my wonderful (NOT) bosses fired me. Nice, huh? I am doing much better now, and have even done some graphic design work for my old part-time employer. Life is starting to look up again, and I am getting going making some new styles of jewelry, and prepping my lampworking (torching) area for future use.

More to come soon, and hopefully some photos, to go with.

Hi there

Ok, so I am a bit remiss in updating my blog. I know it, and I won't make any lame excuses, but I will say I have been a bit busy. In January I started doing beta testing for a new game on Facebook: Chronicles of Blood . . . a really wonderful game from Diviad, the creators of Ghost Trappers (another great Facebook game). Following months of beta-testing I was selected from the chosen few to be one of the moderators of CoB when it went public. What does a moderator do, you ask? Well, I have learned there is no easy answer to that, aside from to act as one of the "online Sheriff's possee" and to keep an eye on how players are treating each other. The multitude of ways people try to cheat the game itself and each other mystifies me. They can be very devious in their attempts, but the "mod-squad" tries to keep it all under control.

If you like monsters and vampires and all that entails, Chronicles of Blood may be right up your alley. I can't get enough of it myself. Check it out while you are visiting your Facebook page.

Cassie and the Bikers, our heroes

 

My darling youngest granddaughter was a recipient of the generosity of Oregon A.B.A.T.E. who bought her a much-needed piece of equipment which the Oregon Health Plan had denied 11 times in the past two years. Thanks all you wonderful guys and gals in black leather!!!

Finally back again

My most sincere apologies to those of you who thought I fell off the face of the earth. I am alive and well and attempting to keep up with life at this point. I will be adding photos tomorrow, so check back and see them, too.

I recently returned from the trip of a lifetime with my cousin Nick (he paid for it or I couldn't have gone), and his (my honorary) Aunt Kay. We went to "French Polynesia" aka Tahiti, in other words most people spoke Tahitian and French, and a few of them spoke English. The language of kindness, compassion, genuine warmth and friendliness was spoken by all.

We left the Portland airport early the morning of Nov. 6, flew into LAX, and departed there for Tahiti on Air Tahiti Nui arriving in Tahiti in the evening . . . and boy were my arms tired. Seriously though, the flight was filled with laughter, movies and pretty good airline food. The flight attendants wore four different uniforms by the end of the flight, and were kind, helpful and amazingly beautiful (handsome). The seats were hard, too close together, and very painful by the end of the 8-hour flight.

We spent the next couple of hours getting from the airport to our hotel, since the shuttle from the airport was taking people to a variety of hotels before ours. We waited on the bus for at least an hour before we even left the airport, it wasn't our fault we cleared customs faster than most since we were the wheelchair brigade. The hotel was beautiful, and the first room we went to was totally inappropriate for an 85-year-old, a 66-year-old disabled person, and a 56-year-old grandma who gets around, but not without a cane . . . it was a two story townhouse set-up, and pretty obviously not right for us. So, they called and found a different room we could have that was one level. The housekeepers came in and split the queen bed into two twins and made up the sofa bed as well. It was a good thing we had eaten on the plane since the dinners that night were $150 per person due to some fancy chef from Monte Carlo being there. The breakfast the next morning was $45 per person, so we opted to take a shuttle downtown and ate at a cute little outdoor fruit/food stand. I think our breakfast there was in the $25 range for the three of us. We stopped next door and bought postcards to send home. They worked out to be about $4-5 each including postage and made it back home the same day we did, it's all about timing.

Our day's agenda was to find some Polynesian shirts, an artisan's marketplace I had seen on the internet, and a pharmacy. The first place I saw was the pharmacy, which we went back to the next day. If I had known what bad shape Nick was in before we left the hotel, I would have suggested he stay in our room with room service . . . but he didn't and we had to deal with his being unable to walk more than a few feet at a time. He would collapse on his walker about every 2-3 minutes, and wasn't covering much territory as it was. We made it past the pharmacy, and halfway down a long block. I told him and Aunt Kay to rest for a few minutes while I scouted ahead a bit, locating a T-shirt shop and "The Market," returning to collect them and get them to the next resting spot. Aunt Kay kept up with me just fine as long as we could go at her pace, but Nick was another story. When he collapsed on his walker at the shirt shop he bent the front wheels, making it impossible to continue without relinquishing my walker (I opted for that instead of my cane since I knew we would be going a long way on broken pavement). It's a good thing I had the walker since he was unable to move without one. He bought several shirts to wear on the trip, and a couple for his brother as souvenirs. The lady at the shirt shop let us store the broken walker there until we were ready to head back to the hotel. (I forgot to mention what fun we had trying to get him on the shuttle to begin with. It seems they have no accommodation for handicapped passengers . . . such as a stool to help get in the vehicle . . . so a worker at the hotel crafted one swiftly from wood and we were able to get him in the big van.) Did I mention how nice the local people are? We went the half block (big blocks) to the market and Nick waited outside while Aunt Kay and I did some exploring. We entered this giant open-air building to find flowers and floral arrangements in every known color, fresh fruits and vegetables galore, hand-woven baskets and hats, Monoi products (coconut oil created the traditional way using either crab or shrimp and flowers), delicious baked goods, shells and shell jewelry, pareos in every color and style of decoration, and even a tattoo shop. Pareos are commonly referred to as a sarong in a lot of places. But the Tahitians use lots of traditional designs and fabrics, and hand-dye or paint most of them, including working into them the name of each island. I have pareos from each location and several tops made using pareos. Since the locals also wore them I knew they would be cool and comfortable, also made large enough for me. We went back and got Nick and headed back to the area where we had been dropped off. He had to stop several times and just rest before we made it, but we were finally in the area we had started (once around a city block). After getting him situated I went back around the block and collected the broken walker. Not an easy feat considering the front wheels wouldn't turn. I was much relieved when I realized we could hire a taxi for just a bit more than the shuttle fare had been. Our Taxi driver, Felix, spoke a little English. He got Nick in the front seat and managed to get both walkers in the back of his little SUV cab. He told us a bit of the history of Papeete and also about Moorea (the nearest island, also his birthplace). He said for $100 he would take us on a tour of the local area and help us find a market to shop for dinner and breakfast for the next day. He took us to a local religious site called the Fern Grotto, two beautiful caverns with lush vegetation. He helped Aunt Kay up the big hill to the top and even took our photo with a "medicine tree" he told us all about. He was a kind and generous man, and so very helpful and informative. Upon returning to the hotel we decided to have lunch in the restaurant, no matter the price. Fortunately there was a daily special that cost 2300 francs each or about $31 per person. Did I mention how expensive everything is in paradise?

For dinner we had fancy ramen noodles and local bananas,the flavor is unlike any banana any of us had tasted before. They were small like the sweet bananas found in Florida, but had a tangy flavor unique to Tahiti. The following morning we ate the rest of our bananas and local coconut bread and awaited the arrival of the shuttle to the beautiful Pacific Princess. From the moment we set foot on the ship we realized the crew was going to take very good care of us. Our cabin was a bit too small for three people, but we did have a deck outside where the coffee table lived when the sofa became a bed for Aunt Kay, and laughter was the best medicine of all. The heat in the tropics was both a welcome change and an exhausting nap-inducer. I don't remember ever sweating as much in my life. It seemed like every time I turned around . . . or walked more than three feet . . . I was soaked. Imagine feeling this way while pushing a wheelchair everywhere. Since the walker incident in downtown we decided the only option was a wheelchair, provided by the ship. We had left the broken walker at the hotel, and might as well have left the second one there as well since it spent the voyage living on the deck with the coffee table. Our steward, Geoffrey, introduced himself and made us very welcome. I told him a few of the things to be prepared for, and we took off on our first excursion aboard ship.

We headed immediately for lunch in the buffet, fortunately I had studied the deck plans in advance so knew where to find things. From our first bite we knew we would be well-fed. We were taken to a table where Nick was seated and waited on hand and foot. The Pacific Princess is a small ship compared to the ones that carry 2,000-3,000 passengers, carrying only 650 or so. Consequently there is less to do, but shorter distances between things made it a more pleasant journey for me. Nick's favorite part of the trip was spent in the Lotus Spa having daily massages and being wrapped in algae, seaweed and (as he said) tin foil and being baked. Aunt Kay spent a bit of time in the casino, and she and I went to the nightly entertainment one deck below our room. We even got Nick to go with us a few times. There were production shows featuring a group of young people singing and dancing, there was an older comedian who was very funny, one night there was a juggler (don't groan) he was not run-of-the-mill he was outstanding and hilarious with audience member assistants however unwilling. One night a lovely young woman sang opera and played the piano. All around the entertainment was just that . . . entertaining. We were back in our cabin by 10 pm most nights and gladly so since for some reason our bodies thought the time to get up was about 5 am.

And now about our dinners. The food was spectacular, but the best part was definitely our wonderful waiters and the couple we shared our table with. It was amazing to find ourselves at a table with a couple from Oregon, and even more amazing to find the wife's name to be Rita (same as me). We made fast friends and I really miss chatting with them each evening.

Our wonderful waiter Lucio and his assistant/wine steward Abu were so amazing we wanted to bring them home with us. He not only made sure we were swiftly seated, but helped me with Nick's wheelchair, cut his food for him and made sure we were well-fed and pampered. A couple of times they sought us out in the crowd in the atrium area outside the shops and brought Nick into the dining room when we were running late. Lucio was also our waiter in the mornings in the buffet, thanks to him spotting us heading into the buffet on our second morning on board and making sure we were seated in his section. One morning I waved to a beverage server we had befriended the first day on the ship and he came to our table to chat for a moment. Lucio (not knowing Jayson and I were friends) said, "No, he is not to get your beverages, Emil is." I told him I knew that, but Jayson and I were friends and he had stopped by to chat. Lucio smiled saying that was wonderful since Jayson was his "shipboard son, and he his shipboard father." I said that was wonderful since Jayson was also my shipboard son, and asked Lucio if that made him my shipboard husband. You should have seen the amazed look on his face. He stuttered trying to think of something to say as we all laughed at his shock. He came over and putting his hand on my shoulder said, "Is there anything you need sweetheart?" I told him, "No my darling, everything is wonderful." And so went the rest of the trip. I told him he was a wonderful husband and he told me he was a grandfather. I told him I was a grandmother so I didn't mind. I told him his wife was a lucky woman.

We found out our steward, and many other employees on the ship sign on for a year at a time. Most working for 10 months without a day off, then getting a two month holiday to spend with their families. I don't know how they do it. Lucio found out he was a grandfather after being home for three days. He said by the time he arrived home there was nothing to be done about it anyway, so it just hurt his feelings that it was hidden from him for fear of his being upset. They had wanted his first few days home to be happy and relaxing. He felt he had lost several days with the new grandchild and made his family swear to tell him everything immediately in the future.

The islands we went to were amazingly lush with vegetation. Do you know how many varieties of papaya, mango and breadfruit there are? I had no idea how many different heights and types of palm trees there are either. We saw noni-fruit, pineapples, mango and all sorts of other fruits growing along-side the road. Our taxi driver said no one in Tahiti goes hungry. Food grows wild everywhere, and no one is every turned away by a neighbor if he is truly hungry.

When we were on the island of Rangiroa Aunt Kay and I went on a glass-bottom boat ride. What a fascinating adventure that was!! Beautiful tropical fish, some sort of "pipe fish," huge eels, sand sharks, and even a manta ray. Wow, we were so lucky. Marcello, our tour guide, said he hadn't seen a manta ray for a long time. Even the snorklers who were nearby missed seeing it.

The people were beautiful, and had the most amazing hair. They said their skin and hair (especially the women's) is treated with Monoi (the traditionally made coconut oil). Most of the women allow their hair to grow long, many of the men, too, but short is acceptable. If they are seriously involved in dancing the girls and women let their hair grow long, the boys and men are often tattooed with traditional designs. Many of the women are too. The dancing is similar to what is found in Hawaii, since it too is Polynesian. We were treated to dancing exhibitions in a couple of different ports, but the one that stands out was in Raiatea. It was the only port aside from Papeete where we could dock directly instead of having to take small tender boats to the wharf. They brought a variety of children on board, the youngest being two 5-year-old girls, which of course I found interesting since I have a 5-year-old granddaughter. They were adorable and so photogenic. The older ladies (mamas) also brought a variety of leis and "crowns" for sale, so Aunt Kay, Nick and I ended up looking very Polynesian that night. The flowers smelled wonderful and made our cabin a lovely tropical place to sleep as well. Tiare Tahiti is a wonderful variety of gardenia and the scent is sweet and used in many of the varieties of monoi products along with ylang ylang.

We visited a lot of different local shops as we traveled around and I quickly became accustomed to the different money, interpreting prices for Aunt Kay. There were a few location that accepted US currency, including Rangiroa and Bora Bora. The exchange rate in Bora Bora being the best for local crafts, one dollar per hundred francs. Many places the exchange rate was 7000 francs per $100. Needless to say I bought a gift for myself in Bora Bora. I took an amazing underwater tour on something called an Aqua-Bike. Riding on something that was a cross between a motor-scooter and a submarine. The tour lasted about 2-1/2 hours including a wonderful boat ride around a large Motu (offshore island). We even saw a school of stingrays in shallow water (no we weren't in the water at the time). It was an amazing adventure, and my back is still peeling from the sunburn I got that day. My gift for myself, purchased at Baldini's, is a beautiful black circle pearl set in sterling silver and mother of pearl in the shape of a sea turtle (one of the special symbols of the islands). Nick sent me back the next day to buy three more for him to give as gifts. My pearl is a beautiful grade B peacock color. Those I found for him were different colors and all grade A in the same jewelry shop at the same price, but new merchandise the jeweler had just brought in that morning. It's all about timing, I guess.

We only got Nick off the boat in a tender in one location, Moorea. And the tour we went on was fascinating, unfortunately it was raining horribly so we couldn't really see much. We drove to the top of a mountain to have a wonderful view of the mountain known to fans of the movie South Pacific as Bali Hai. Fortunately we had seen it from our balcony on the ship first thing in the morning.

Our voyage was put on film at every port and at a couple of formal evenings. I don't normally wear much dressy stuff, but tried to be as dressy as I could with what was relatively cool and comfortable.

Each day brought new adventures both in and outside our cabin. My daily ritual began with preparing Nick's medications for the day. (He takes about 15 different types of pills and 2 different types of insulin shots. I got the meds ready for the entire day first thing each morning while my mind was fresh.) Then got us both dressed and headed out the door with the assistance of Geoffrey. I knew we would return to an immaculate cabin, and a big welcome back smile and friendly greeting for Aunt Kay, "Sir" Nick and me.

I had no idea what I was getting into when I said of course I wanted to go on a wonderful vacation with them. I don't remember working this hard for most of the past 10 years. The rewards were a lot of laughter, and seeing Nick enjoy the times he was able to. I am still tired and we have been home for a week and a half now. But looking back I wouldn't change a thing, and I wouldn't have missed it for the world.