Sierra's Biopsy Update

Sierra and I went to California the 21st-23rd. We got back last night at 10:30 PM. A long trip. Sierra had a biopsy Tuesday morning and all went well except, she has had a hacking cough for the last 3 weeks. The OR crew knew about the cough and was still OK with doing her biopsy (thank heavens). Toward the end of the biopsy, while she was under anesthesia she coughed and a bunch of gunk came up with it causing her oxygen saturation to drop a little bit. So, instead of the typical 1 1/2 hours of recovery, they wanted to watch her for 4 hours. If you can imagine, a room with four other beds in it with just curtains separating each one and a lot of little kids waking up from anesthesia. It can be pretty loud and obnoxious. So normally Sierra recovers really quickly and we end up leaving very shortly after she is wide awake. Now we had to sit there for four hours! She was not a happy camper, in the words of Sierra, "I just want to leave here, we are wasting our whole day." The doctors came in at the end of the four hours and told us that there was a little spot at the bottom of one lung on the chest x-ray so they wanted to start her on some antibiotics. She would take the antibiotics for 5 days and if the cough wasn't gone then to call them. Sierra's interpretation was, "We will put Sierra in the hospital for 5 days and then check to see if her cough is gone." Needless to say she was in no mood to talk to our favorite doctor, Dr. Bernstein, until I got her straightened out. However, the damage had already been done and she couldn't stop crying because she thought she was going to have to be admitted to the hospital. Anyway, we finally left the hospital and she was much more tired and exhausted than normal so we went to dinner with our favorite Stockwell's and then went back to the RMH and to bed.
Sierra's biopsy was a 1A, which we were actually relieved it was only that and not something more. We would have loved a 0, but with all she has been through the last few weeks we will take a 1A. Which means we get to return to California in 6 weeks for a follow up biopsy instead of 4 months. We are so very fortunate to have such a conservative group of doctors caring for Sierra. They really seem to look at everything with a thorough eye. Our stay at the Ronald Mcdonald House wasn't as fun as usual because of Sierra's cough. It alarmed many parents and so we were quarantined to our room (which is understandable with a house full of immunosuppressed kids) which is like a hotel room only without a TV or any form of entertainment. Sierra was upset, but, she got a lot of her homework done!
We missed seeing our friends the Thorntons, hopefully we get with you guys in June. We loved seeng the Stockwell's. They were our salvation in this whole mess of being quarantined. Thank you guys for visiting with us. See you in June! We love you guys!

Shawn (waiting for a heart for 2 years now), his sister Hailey and Sierra in front of the RMH.


Trista, Shawn, Hailey and Sierra. Not pictured is Shawns 2 sisters Amanda (at school in Palo Alto) and Sam(home in Alaska) and his dad George(home in Alaska).

Shawn, Hailey, Sierra, and me.

We are Home!

Well, we got to come home this afternoon. We went to Boise yesterday and Sierra got a picc line in. She couldn't keep an IV going long enough to get a continuous round of the medication going. So she was discharged from the hospital here in Baker and we went to Boise. It was fun to see all the nurses we knew from almost 2 summers ago. It is always fun to see Amanda there. We returned that same afternoon and was readmitted to the Baker hospital. The doctors discussed options and decided with a picc line in I could administer her medication at home (thank you!!). Her rash actually hasn't grown any the last 24 hours. That has been the frustrating thing, that it keeps growing and that spot blisters and then you have to wait for it to scab over. But, the fact that the rash hasn't grown the last 24 hours is very encouraging. We are hoping only another 24 - 36 hours of the IV medication and she will be done. So far, as long as she is 100% scabbed over by Monday the 14th of April, we are still on for her biopsy.

Update on Sierra

A quick update on Sierra. Shortly after my last blog update California called and wanted Sierra to be taken to the hospital in Baker to start IV therapy. So, another hospital admission that Sierra was absolutely thrilled about. They had to break one of her blisters open to get a culture on the fluid to make sure it is shingles. That was not so fun for her. Lots of pain the first night there. Rough day yesterday. She had no appetite and started vomiting that afternoon (no appetite and vomiting doesn't take long to bring back too many bad memories). They gave her some Tylenol #3 and that helped almost instantly with the pain. She passed out for about 2 hours in the middle of the day yesterday. She had one vomiting episode during the night and they have found that one of the side effects of the antiviral medication she is getting IV, is vomiting. She sounded a lot better this morning and some of her blisters are starting to scab over so the doctor feels we are turning a corner. Her pain is less and less but the rash continues to spread. We are hoping she only has a few more days in the hospital and we can bring her home. Her IV went bad today and so they had to start another one and it took two pokes. She was not very happy for about four hours today and then finally calmed down. Little to no pain as far as the shingles go, but now they are getting VERY Itchy. Which is a good thing.

Sierra in her usual position in a hospital bed. This was in between pain spurts.

This is a picture of Sierra's rash. These are on her lower back. The middle one is starting to scab over and get very itchy.

This is a picture of her left thigh. The rash, "shingles", starts at the back and follows her nerve track around to the front of her leg and is spreading down her thigh. The first spot she showed me a week ago was the one on the front of her leg that is scabbed over. It has spread that much since then.

The Bingham clan at the end of a long day. Mom and the kids are heading home and Daddy is staying with Sierra. Sierra is trying her best to hold her eyes open. She is exhausted.

Poor sad Sierra

Sunday, Sierra started complaining about her leg hurting on the inside of her left thigh. I looked at it and there was this tiny cluster of bumps. I thought that it looked a little odd but put lotion on it and told her we would keep an eye on it. By Monday it had grown to a few more little clusters and by Tuesday it was about half way down her thigh. I had a doctors appointment Wednesday morning and asked my doctor about it. He said, "It sounds just like shingles." I felt my heart sink to my stomach. Anyway to make a long story short, she has shingles. We took her in later that afternoon and confirmed it. She has acted great. But, today she is in A LOT of pain. It just hits her and she screams and cries uncontrollably. I have never had shingles but I talked with a lady that has them right now and she said, "There are three worst pains, birth, passing a kidney stone, and shingles." So, we are at her beck and call to say the least. Fortunately, I don't think this is going to mess up her biopsy scheduled for April 15th. California doctors said they never see this in their pediatric transplant patients. Sierra is just the lucky one. TA -TA for now!

Spring Break!

This week was our spring break so I decided to take the kids and head to southern Utah and visit my sister. On Saturday the 22nd we went to Canyonlands National Park and rolled Easter eggs on a small hill of sand rock. Then spent the rest of the day hiking.

This is Newspaper rock, called that because of the hieroglyphics.

Sierra and Lindsey with their Easter eggs.
Hunter rolled one down and then decided to hang on to his other two.
Sierra and Megan with their eggs. I think there were over 10 dozen eggs my sister had colored the day before. Thank you Holly for all your hard work. It was really fun!

This is the hill we were rolling our eggs down. That is my nephew Morris looking at the remnants of eggs.

This is a place in Canyonlands that the cowboys used as shelter. They camped out here or maybe even lived. The tops of the rock underneath is black from the camp fires.

This is an outside picture of the cowboy hacienda. My niece Mya and sister Tiffany are pictured with my kids.

This is called looking glass rock. It is a fun climb. When you get to the top there is a huge bowl on the other side of the rock like a big cave. It was impossible to catch a good picture of it.

Aunt Tiffany, Hunter, Lindsey, Megan, Sierra and Mya at the top of Looking glass.

The Kids and I in our Easter outfits on Easter morning.

Sierra, Megan, Aunt Holly, Morris, Mya and Lindsey making peep zoom buggies out of ho-ho's, peeps, gummy life savers and frosting.

TA-DA... the finished product. This was at my sister Holly's house in Monticello, UT.

On Tuesday the 25th we went biking in Moab, UT. Pictured above is Megan, Sierra, Hunter and Lidsey (in the pull behind), my sister Holly, niece Mya, and my step sister Jenny. Thank you Jenny for taking us biking it was a blast. That was one of the highlights of the trip for my kids.

Born to bike!! Doesn't he look intimidating.

Our last stop in Southern Utah was the house that Jason lived in until he was 2. It was still there just with new siding and new roofing. It was really hard to get a good picture of it, but it was exciting to see the house in Moab, where Jason started. His parents moved here to Eastern Oregon from Moab, UT.

Plays and Easter Egg Hunts

Every year in the spring, the Missoula Children's Theatre (a group from Missoula, MT) , come to schools in rural areas. They show up on a Monday and hold auditions and then the show is on Friday. I am always amazed at how well the children learn their parts in just 4 days. Sierra and Megan were lucky enough to get parts this year. Their first big debute in the thespian department. This year the play was Robinson Crusoe. Don't worry, it was nothing like the actual story. This is a picture of the entire cast at the end of the program.

Megan was a chameleon along with 17 other children. Megan was so hilarious to watch. She new her parts very well and usually you could hear her very well over the other 17 children. She always shoved her way to front and center. If you know her your not surprised by this.

Sierra was a member of "The Very Hairy Frowny-Face Tribe" who frowned because they could never scare anyone. Sierra also did a great job. You could her very well as well. We were very proud of both of them.

A close up scary picture of Sierra. I can see why they couldn't scare anyone. They're too cute!!

After the early show we had a few hours so we went home. I had time to put finishing touches on the girls' easter dresses. So, I had them try them on and Hunter of course wanted to try Sierra's on. I stood him on the barstool so he could get the full effect of a full dress. Of course, he threw a fit when I took it off. Close your eyes Jason, I am sure this won't be his last attempt at wearing a dress with three older princesses in the house.

Today was the annual easter egg hunt on horse back. Jason's brother Jake, that we live next to, holds an easter egg hunt every year. Every child brings 6 eggs. The parents go and hide them in the designated area while they play games and then they have 5-6 horses. They take the children one at a time to go find an egg on horse back giving them 6 chances to go for a horse ride. It is always fun! However, it wasn't ideal weather. It snowed hard for most of it. That didn't stop the kids however. They had a great time.

Megan sporting her Easter egg. No, the picture is not fuzzy. That white stuff in the background is snow.

Lindsey out for one of her rides. You can't tell, but she really is smiling under all those layers.

Hunter was awsome, he only threw a fit every time he had to get off the horse. Sierra was a trooper to go with him a few times so he could stay on the horse.

This is the picture of the designated area where the eggs were hidden. This is a little pasture between our house and the dirt road we live on. It worked perfect. The snow did let up toward the end, but I don't think the kids even noticed. After the easter egg hunt we have a potluck lunch with all the neighbors and friends that brought their kids. Thanks Jake and Wendy for all your work. So there is our weekend in a nutshell. Holly and family, the girls and I will see you in the next week. We are very excited.