Two months later

The red heart marks the area, 4Th floor, where Stacy spent a total of 16 days in Oct. and Nov. after receiving the miracle of a kidney. This view was photographed above LLUMC, rear of the hospital, and shows the mountains that we looked at for hours on end while sitting at Stacy's bedside.

It will be two months tomorrow since the transplant and happily she continues to improve. Her BP is no longer a problem and she's now off of the 5 meds she was taking and much to my delight, she hasn't had one seizure! I predicted that the near daily occurrence of seizures would cease when she was no longer on dialysis. No one agreed with me, after all, I'm only a mother and not a neurologist. The seizures started 3 months after she started dialysis; the announcement of them came with the first Grand Mal I'd ever witnessed in person. She ended up in a coma for 24 hours and was in ICU for 3 days.

On a brighter note, my grandsons brought their parents to stay with us for 2 nights! Watching them open gifts and play with their new treasures was a much-needed event after the hospitalizations and numerous doctor appointments. As Sally Huss says, "To celebrate with family is the best of all presents."

The weather has been colder than the past two winters I've spent here in the desert and a lot wetter. We might be in for a true winter and not the usual dry desert kind. Love the snow-capped mountains.

Transplant, abstract painting, and . . .

I'm not sure why the image turned out looking cropped, but I have a feeling it's my lousy photography! The painting is more balanced in real life; the lines on the left aren't as short.
I painted this a few months ago before life became as stressful as it's been since Oct. 28th. Presently, I feel certain that I've lost all of the skills I worked hard to acquire such as working with acrylics and needle-punching. Hopefully, it's just fear.

I have a great fondness for Mandalas but after I painted the circle this painting came to an abrupt stop. Though, looking back it might be because the intense heat of summer also happened at the same time and I could no longer work in the garage. In mid October while walking past the painting on the work table for the umpteenth time I was compelled to work on the piece and a few hours later stopped. I'm pleased with it.

So, since I last posted some time last month Roger had surgery for melanoma which was successful. No sign of cancer spreading, but he picked up a nasty staph infection under his arm where one the drains was and is currently hooked up to a VAC pump 24 hours a day. The battery pack/machine is inside of a cloth bag that he carries over his shoulder. Hopefully, he'll be his old self again soon.

The day before Thanksgiving we ended up rushing to Loma Linda, 1.5 hours away, where Stacy was admitted again to the transplant unit. They gave us the bed next to the window this time in the same room she had in Oct. It took a couple of days to ascertain why she was so ill and by the time the second infection was discovered she was in crises. Her heart rate was so high they feared a stroke and her temp was rising. An emergency trip to the OR to remove the 4 year-old dialysis catheter instantly made a difference. She also had a bladder infection which happens frequently to those with kidney transplants. The third thing that was addressed was low blood levels that required a unit of blood and weekly shots of procrit.

On November 28th, one month exactly after the transplant, the new kidney started working!!! It was also the same day she started dialysis 8 years ago. We have so much to be thankful for and watching her daily improve has been absolutely amazing. She was going downhill rapidly before the transplant and I feared she wasn't going to be with us much longer and then when the new kidney didn't wake up and she became so ill that she wasn't eating I once again panicked. I should have known better though because she's always been my miracle child.

Life after transplant hasn't changed too much yet. We no longer go to dialysis 3 times a week, but Stacy needs to go to Loma Linda weekly for labs and a check-up and Roger is going to the wound center twice a week and mom has been to the ER. Doctors and hospitals have taken over our days! Stacy's diet isn't as restrictive as it was for the 8 years on dialysis, but it's still monitored with lab tests making sure that her potassium, magnesium, sodium, and calcium levels aren't too high or low. She needed potassium and magnesium IV's during her 9 day "tune-up" at Loma Linda.

The weather has been outstanding here in the desert and today there is a storm brewing that has created the perfect ambiance for winter. It's so much calmer here in the desert and we all sighed when we came over the Banning Pass after 9 days at Loma Linda Hospital. Loma Linda and the surrounding area isn't as hectic as the LA area, but it might as well be. I don't do well in crowds and the traffic wasn't easy to navigate, especially when one is exhausted and stressed. Mom and I stayed in a hotel at night and Roger, bless his heart, slept in a chair at Stacy's side every night. We didn't have anyone to leave mom with this time which added to the stress. But, it's over with and life goes on. Sadly, mom has quickly moved into the 3rd stage of Alzheimer's and only lives in her head now and I wonder when the day will arrive when she no longer knows me. I'm in awe that the kidney transplant happened when it did being that mom wouldn't be able to sit at Stacy's side during dialysis as she once loving did! Life! Who can figure it out?

This is a fun link:
http://www.icq.com/img/friendship/static/card_7944_rs.swf

Belated Halloween and Transplant!!

Week #7 of 52 projects is a tad late! I have a good excuse. Hold on to your seats! On October 28th the phone rang at 8am and the sweetest voice I've heard in a long time said, "We might have a kidney for Stacy, don't let her eat anything and we'll get back to you in a few hours after more checking is done. But it looks good enough to put you on notice." Being that I was in a deep sleep when the phone rang I wasn't positive that the phone call was real, especially when I assumed that it might be the local hospital calling with the pre-op info for R's surgery. (hopefully, he'll have the postponed surgery on the 21st.) I didn't know what to do but felt that if we started packing we might be disappointed so we only took showers and tried to figure out why mom was more confused than usual. (Sadly, mom is now closer the last stage of Alzheimer's and has no clue when she started living with me.) I phoned my daughter and SIL and they began to make plans to meet us at Loma Linda Medical Center to pick mom up. At 11:00 the phone rang again, "Come on in! It's a go. We're 99% positive that in a few hours Stacy will have a new kidney.

It's a 1.5 hour drive to LLMC and it was the most emotional trip we've ever had. Who was the donor who died during the night? Tragic!!! We arrived at LLMC at 1:45 and were immediately whisked into the room that would be Stacy's for the next week. A team of 7 asked a million questions most of which I couldn't remember answers to! My brain had left the planet. The surgeon , young from Nigeria, was fabulous and kept putting his arm around me and in a soothing voice led me through the questions and the information he needed to tell Stacy and me about the transplant. Stacy's veins had shut down meaning that the 20 or so vials of blood they needed to check everything out couldn't be drawn! My heart sank. But Dr. O..... quietly said, "Go and get a dialysis nurse to come in and use Stacy's catheter, lots of blood can be drawn there." DUH!! Her blood tests were quickly evaluated for possible infections etc. At 4pm Dr. O said all that it was time to re-check the donor kidney from a young man that was compatible for Stacy.

At 5:15 Stacy had finally entered a place of peace and was able to tell the OR nurse that, "you're going to cut me open, put in a kidney, sew me up and ship me out." Leave it to Stacy to simplify the details. I always fear that at the last moment Stacy will say, "Nope, I'm not doing this and want to got home!" She seems to know that even though she's scared she needs to follow through. (I'll write more about everything on my other blog.) But, we've had lots of complications and the kidney hasn't woken up yet so she's still on dialysis. I had never heard of the term "sleepy kidney" which is actually (ATN) Acute Tubular Necrosis but it isn't rare and can last from 2 weeks to 3 months!!! Talk about needing patience. There is always a chance that the kidney won't wake up, but as of last Tuesday the ultra sound showed enough improvement for the doctor to tell me that it's just a matter of time before it wakes up. We're counting on it!

Every day has been fraught with stress as we deal with side effects from the powerful anti-rejection drugs, numerous small seizures, need for transfusions, coma-like sleep, dialysis and other fun things.

Side Note: Stacy went onto the national kidney list on Sept. 15, two weeks later we received a newsletter with the staggering numbers that as of September there were 77,055 patients listed for a kidney transplant. On Oct. 28th Stacy received a donor gift just 4 days before her birthday and one month shy of 8 years of being on dialysis. Yes, it's surreal and won't sink in until she's off of dialysis!


Isn't this ATC amazing? Jan L. from TextileChallenges sent it to me; I had joined a swap. It was waiting for me when we returned from LLMUC, I always forget the university part of the name! It's a teaching hospital so I felt like we were in the middle of a Grey's Anatomy or ER episode!

My piece is: light grey and purple needle punched together and cut to resemble a city skyline. Further needle punching to join the skyline with the black felt background. The yellow moon and wispy clouds are roving. I also did some machine stitching.

Quote: "The age of miracles is forever here. "-- Thomas Carlyle

"We are miracles. Each of us is an absolute astonishment. So whether you believe in miracles or not, we still are. We still partake of 'miracledom.'"-- Ruby Doe

It's official

After nine long months of tests and jumping through hoops Stacy, my precious daughter, is finally on the national kidney transplant list! Now the wait begins for a match. Thanks for all of the good thoughts and prayers!

Handmade Paper

Handmade papers and rust monoprinting. (Couldn't get this one to scan straight!) It seems that we're having a bit of a heat wave! 114 yesterday about that again today. Yikes! The monoprinting part of this piece only took about 2 hours instead of overnight. The background paper is my secret, rusted paper and the top layer is a blue speckled piece that was made from copy paper and blue card stock.

The transplant saga continues: My plan to load Dr. L. with as much info as I could along with my plea for help, and I'm positive the good thoughts and prayers from just about everyone we know, allowed things to fall into place in such a way that it now seems ridiculous that I was ever so upset! Faith!! We met with Dr. L at 1pm today and he said that he couldn't figure out why the transplant team needed his approval/clearance so he wrote on a prescription pad, "PT can have surgery." I wonder what the team will think about that? Then we started a plan to wean Stacy off of the Dilantin and increase one of her other meds which should take about 3 weeks. We're hoping for a balance that won't throw her precarious system into high-alert causing seizures. Sounds easy doesn't it?

Dr. L. was also in total agreement with me that it's not necessary to pursue the epilepsy surgery evaluation. Phew! What a load off.

Thank you readers for "listening."

Quote: Moodling, a combination of musing and mental doodling, can lead to floating over any number of obstacles . . . Jane Chanpagne

Monoprinting Challenge

Monoprint challenge. Spread paint onto freezer paper or sheet of glass. Make a design or not, lay fabric over the paint, brayer fabric to create a tight bond, pull the fabric off and you'll have a new piece of fabric to play with. I love this technique! It's been years since I've done any monoprinting and suddenly ideas are springing up everywhere. Tips: brayer from the middle out to the edges, this makes for less movement of the fabric and a crisper lift of the print. Use only a couple of colors, otherwise you'll get mud. Use a brayer or paint spreader to evenly apply paint to the surface, make a quick design or use stencils or rubber stamps. I find that I often need to spritz water over the paint before putting the fabric over the design, but then it is 100+ degrees here in the desert right now!
Thank you Carol Taylor for another fun challenge!!!

I'm working on a couple more rusted objects monoprints similar to one posted a few days ago; they're not quite as instant as using acrylic paints or inks are.

Another piece that didn't make the grade for the collaborative. This one was re-worked numerous times before I finally stopped. There is a peeling paint effect that was achieved with gesso over black paint, sprayed with alcohol and rubbed until I liked it. Depth surprisingly occurred when light and dark shades started playing off of each other. This piece didn't jive with the direction of most of the work for the collaborative so it's now in my collection.

Kidney Transplant Update: We received news by mail late yesterday that an important clearance had been overlooked. Who do I blame and shout at?!?! This important neurology status about Stacy's seizures had been omitted from our list of 14 things to have done! It should have been number one. Unfortunately, yesterday the neurologists office phoned and canceled the appointment Stacy for the 27th with the news that Dr. L. can't see Stacy until July!!!!! I wasn't happy about that, but once the letter from Loma Linda was in my hands I hit the roof! One of the anti-epileptic meds would interfere with a kidney transplant anti-rejection med so unless the anti-epileptic med is changed, and that could have been done over the course of the last few months while the other tests had been done, she can't be put onto a transplant list. I'm having a very difficult time coming to terms with how this happened and what can be done about it. Stacy is wounded beyond reason. We're not having an easy time with this news. Dr. L. is one of the few overbooked neurologists in this area, so simply saying that I'll find another one isn't of much help.
I've just spent the last hour putting together the information and my concerns into a thick package of materials that I will carry to Dr. L's office on Monday. Hopefully, he'll see the need to start doing something about the med and he'll phone me. Plan B is to do a sit-in . . . This particular medicine has concerned Dr. L. for quite some time and he has wanted to wean her off it while trying another med. We're just a little late getting around to it. So, the saga continues . . .

Quote: Sally Huss to the rescue again!! "Give up your concerns, not your attention, but your concerns."