Beautiful Fall Colors

Sorry its been so long since I've updated the blog! So much has happened in the last week.

Katie and Calla left yesterday after helping us out for 10 days! We had such GORGEOUS weather while they were here. It was so fun taking Calla to the park & playground. The colors were stunning! She was fascinated with walking thru the crackly leaves at the park...back and forth, back and forth. And she loved feeding the ducks!

It was a nice distraction because during those 10 days we put on 500 miles on the car driving Kristie to doctor appts and to her programs.

So here's the update on Kristie. She struggled thru last weekend with the low grade fever, taking Tylenol every 4 hours. Monday to the doctor. Creatinine back up to 2.3. Tuesday to the doctor, Creatinine 2.1. Wednesday, to the doctor for labs. Thursday to the hospital as an outpatient to get a blood transfusion and two shots.

She had to get blood because her white cell count is extremely low at 21. It should be in the 30s. A normal person's count is 37. The blood should help with that and the shots she had should help boost it as well. If this is not addressed then she runs the risk of catching a virus, or the flu, or a cold and from that she could get really sick since her immune system is shot right now (because of all the medicines she's taking.) In fact the reason her white cell count is down because she's taking a drug called Valcyte and in 10-15% of patients who take this, their cell count goes down.

They wanted us to go in for labs this Saturday and I told them we needed a break and could we just go in on Monday and they agreed. Sigh.

We're almost at our wit's end. I'm not sure how much more Kristie can take. She's emotional, cries at everything, its just alot for her to handle so please pray for her emotional well being and for the strength to get thru this difficult time.

On another topic, I've had trouble with my right foot for over two years now. It aches all the time and has progressively worsened. I've been seeing a foot doctor for a year. We decided last week that I needed foot surgery and it'll be schedule for the end of next month. Its an outpatient procedure and I'll be home afterwards with a two day recovery time. So, not bad. Better to get it done in 2008 so we can all be well in 2009!!

I'm looking forward to 3 days without doctors!

We miss you Calla!

Update

So, Wednesday arrived and we went to the clinic to get the catheter out. But, Kristie had a fever of 100.5 when she woke up. She's never had a fever since the transplant in July. If she has temperature of 100 or over we're instructed to call the doctors.

By the time we got into the clinic her temperature was 100.1 and they are concerned.

Walking around with a catheter and a bag is really annoying...the catheter is out...what a relief!

We waited for the lab results to come in and the good news is her creatinine is 1.6!!! Let's pray it stays there! It hasn't been that low since the transplant. Yay!

The bad news is that if her temperature reaches 101.3 she has to be admitted to the hospital again.

So far, we've managed to keep it under that. Right now its 99.3. (last night, it was 101.)

Hopefully, if all goes well today, we're going to take Calla to the Children's Museum.

Its cold and rainy so no playground today. Calla loves going to the playground to watch the kids and the ducks and the airplanes. And to play on the motorcycles. She can reach the pedals now.

Thanks everyone for praying. Please pray her temp comes down to normal.

We're home

We're home and Katie and Calla are here. All went well. Keep praying. Love, Julia

Happy Monday

Its Monday and we're in the hospital. Kristie was in alot of pain Friday & Saturday and after many phone calls to the transplant center at 1 a.m. Sunday we decided to admit her. Her stomach area was swollen. We thought it was from the biopsy last Thursday (the results of that were normal.)

She had a cat scan of her stomach area at 4 a.m. and they found that the stint had moved up thru her new kidney (which is now positioned near her bladder) and was sticking out thru the top of the new kidney. The reason her stomach was swollen and she was having pain is because urine was seeping out of the new kidney into her stomach area.

Evidently, this is a rare occurrence. Nice.

So Sunday afternoon they gave her general anesthesia and repositioned the stint back into her ureter where its supposed to be...that's between the new kidney and the bladder. They also put a catheter in to help with the urine being directed down into the bladder instead of up and out.

We were back in her room about 3:30 p.m. and had an unbelievably patient Nurse, Heidi. Thanks Heidi.

What a noble profession nursing is. I am so impressed with the nurses on Floor 11 which is the transplant floor. Really, they're the best. (Mind you, I could never do it, but I feel like I'm getting the hang of things...well, a little anyway...okay, not really.)

So, its about 8:30 a.m. Monday and we just met with the team of doctors (3 to be exact) and the transplant coordinator, an intern, and the social worker...all at once. They like to show up all together and discuss. It really is like television. Only they are all really nice to each other.

So, the plan is to draw blood, get the lab results, and if they look good send her home today with the catheter. On Wednesday they'll take the catheter out and hopefully put this all behind us.

Yep, that's the plan. What I know for sure is that plans change.

Stay tune for more excitement in the Moore/McCleary kidney transplant saga!

P.S. Katie and Calla flew up last night about 11:30. Since I spent the night at the hospital and they went directly to the house, I haven't seen them yet but am looking forward to some baby time. (I might have to change that to toddler bliss since she's almost 16 months now!)

P.S.S. Kristie's creatinine spiked to 6.4 and is now back down to 4.6. Please pray for it to go down to 2. Thanks everyone!

Update

Well, its been a long week. Here's the update.

After going to the doctor last Friday and waiting 3 hours, I left without seeing a doctor. Evidently, he was dealing with someone on the phone while Kristie and I waited over an hour in person. I do understand though and I actually wasn't angry or upset, just disappointed that I didn't get to talk to him in person. He called me about a half hour later to apologize and indicated that Kristie should come in Monday for labs again and then they would make a plan.

Monday arrived and we went in for labs. Then Dr. Precht and Dr. Marks, the two top surgeons at the Transplant Unit, told us that two more tests would need to be done. First, a dye injection test and another biopsy.

So, Tuesday we did the dye injection test and they decided that everything looked good so they took the tube out of her kidney - remember the one that's been sticking out of her stomach for two weeks now? Yeah. that one. We were there from 10 a.m. to 4 p.m. Fun times.

Wednesday, we actually had a doctor day off and Kristie went to her social program and her Drama Class - she's in A Christmas Carol where she plays Melinda and Young Scrooge.

Then Wednesday afternoon the doctors called and said they wanted to do a kidney biopsy on Thursday. Kristie had a biopsy two months ago and, unfortunately, it was not a good experience, painful. They actually go in thru the stomach and take a piece of her new kidney out to run tests on it. Not fun. They assured us that this time Dr. Precht would perform the biopsy and they would give Kristie what's called "conscience sedation" and that even though she would be awake and talking during the procedure, she probably wouldn't remember it later.

Thursday arrived, we had to be there at 8:30 a.m. for pre-admitting. The biopsy was scheduled for 9:30 a.m. Because of the new computer system they are installing at Swedish Hospital called Epic it took them 40 minutes to input all of Kristie's medications into the computer. Evidently, the transplant team's computer system does not link to Epic, so what should have taken 20 minutes to preadmit (and put in an IV) took almost two hours.

I sang the patience song.

At 11 a.m. they finally did the procedure. Twice. The first sample they got wasn't quite big enough. I didn't look...just held Kristie's hand and helped talk her thru it. The good news is that the conscience sedation worked like a dream and Kristie was awake and talking, didn't feel too much pain and doesn't really remember it.

After the biopsy she had to lay in bed (almost flat) with a heavy sandbag on her stomach for 5 hours. Yeah, 5 hours. So we got home about 6:30 p.m. Another 12 hour day with the docs.

She's had stomach pain ever since. Its Friday and I just called the doctors to tell them about the pain. If it continues they'll need to admit her to the hospital.

Kristie's been through alot and frankly we're all tired of it. I wonder at what point do you say, enough is enough?

And, to top it all off, her creatinine is 3.4, up from 2.0. NOT GOOD. It should be going down. A normal creatinine level is .08 to 1.0.

Please pray for some answers. Answers for her doctors and answers for me as her mother.

P.S. There is some good news. The kidney biopsy showed a healthy kidney. Then why is her creatinine 3.4? That's the question of the day.

doctors and tubes

Doctors, Doctors, Doctors...as my husband would say "bloody ridiculous".

We spent six hours at the doctor Monday and then 3 hours today. They are evaluating whether or not to take the tube out of her kidney (mind you, its sticking out of her stomach...very weird.) If her labs come back on Friday okay, they say they'll probably take it out.

We're tired of the tube.

We'd appreciate prayers.

Thanks so much.

Kristie is dealing with everything quite well. I swear if "normal" teenagers/kids could see what she deals with every day, I don't think they'd complain so much.

News

Everything went well. Kristie is home and was brave thru the whole thing. Turns out they used general anesthesia and put the tube in her throat again but it was out before she woke up and she doesn't remember it.

Staying in the hospital overnight was a reminder of why we don't like hospitals. Constant interruption and noisy.

Katie's here from Sacramento and will take care of her while we fly to Vegas with Nigel's mom from England. We're meeting other family there as well. This trip has been planned for six months and will be a good getaway even though the timing sucks.

Kristie has to go in for labs Thursday and Friday. There is actually a tube the size of a straw sticking out of her stomach...I know weird.

Just another day in paradise.