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!