Peyton's Fight with H.U.S

I decided to start documenting Peyton's fight with H.U.S mainly to keep family and friends updated and to ease some of you who may not be able to contact us directly. I wish I could call everyone and let them know day by day how our little girl is doing but of course I can't, so I hope this will help. My goal is to update every morning and evening.

First off, we believe Peyton got sick from either her visit to the Peachy Pig Farm (see previous post) in Hillsboro on July 3rd or her visit to Salmon Creek the following weekend. She had a blast at the farm of course but decided to take a taste of the chickens feed (a piece of bread) off the ground. Trevor said she didn't swallow it but spit it out after daddy caught her. She also spent a lot of time petting almost every dirty animal there so who knows what the source was.

It wasn't until Wednesday, July 17th that her first symptom showed up. We were at Trader Joe's when all of the sudden she threw up everywhere. I have never seen so much vomit and it just kept coming. I immediately felt her forehead and she was burning up. After getting most of it cleaned up I rushed the girls out of the store and into the car while dialing the nurse at Kaiser. Of course the receptionist answered and said the nurse would call me back as soon as she could. UGH!! When we got home I cleaned her up and got her into bed to watch a movie while I waited for the nurse to call back. Her temperature was 102.5F. Two hours later the nurse called and told me her symptoms sounded like a horrible virus that was going around. I was to give her lots of fluids and Tylenol for her fever and that she'd probably get diarrhea in a few days as well.

Thursday she did OK. She slept in, her temp had gone down to 99.0 (she was still on Tylenol) and she was in good spirits most the day. Around 6:30pm she threw up again.

Friday we had plans to visit my Aunt for her birthday lunch. Peyton spent most of that time running around with her cousin on the front lawn of the restaurant acting as if nothing was wrong, but by that evening she started getting diarrhea. I was told this would happen by the nurse so I was prepared for it. She also started throwing up everything she put in her mouth, which wasn't much by this time. Trevor ended up sleeping in her room all night because she was rolling around saying her stomach hurt. We felt so bad for her, she was so miserable and nothing we did would make her comfortable. By 3:00am I was surprised to find her first bloody stooled diaper and it was then I knew something was really wrong. I called the advice nurse immediately and she told me to go into the urgent care as soon as they opened (10am on Saturdays). We were so antsy until then. I knew then something wasn't right.

We checked into the urgent care at Kaiser at 9:30am and they got her in pretty quick. I over heard the receptionist telling the nurse to get her in right away, this made my stomach twist but we really didn't think there was anything life threatening wrong. They immediately did blood work and started her on IV's because they could tell she was very dehydrated. Next was a UA, unfortunately they had to place a catheter. You can imagine how traumatic that was for Peyton. That was probably the first I time I felt my heart break into a million pieces watching her go through that pain and all I could do was hold her. Her blood tests and UA came back clear. Next was more fluids and an XRAY of her Abdomen. That is when we got the first bad news. They believed she had what was called Intussusception, a very serious problem involving the bowels. So we were on our way to Doernbecher feeling incredibly scared for our little girl, not knowing what to expect and thinking she may have to have emergency surgery.

We checked in to Doernbecher and first up was an ultrasound to confirm any bowel problems. Peyton handled the test pretty well. At this point she was pretty tired from all the caous. The ultrasound confirmed swollen bowels but not Intussusception. They felt an enema was necessary just to be sure. So we were off to another room for that procedure. Peyton was awake through the whole thing as they inflated a small balloon in her bum and worked their way up her intestines. They did not find Intussusception but did confirm she had swollen bowels. we were then moved to a room on the Pediatric floor of Doernbecher for further monitoring. Trev and I still had no idea what to expect. At this point I think we were shocked we were even here. I mean as a parent you think your kids are pretty resilient. You think "it will never happen to my kid" if I'm doing the right thing as a parent. Peyton has been healthy all her life. One cold she caught from me when she was 2 and that was it. No way could she be this sick!!! Blood results and IVs followed. Her temp was stable, blood work good, and only a little tummy pain. We were told they just wanted to make sure she was hydrated and we could probably go home Sunday. They continued to monitor her blood and give her fluids. Then her diarrhea got worse and she became very lethargic. Her blood counts started to drop and this is when they believed she had something more than a virus. Blood in the stool was not consistent with viruses. In a minutes time we were surround by doctors. They told us she may have whats called H.U.S. or Hemolytic Uremic Syndrome and she needed to be monitored much more closely. We had no idea what this really meant but knew it wasn't good news. I was shocked, scared, and motionless. My daughter layed in my arms pale and asleep and at this point fighting for her life and there was nothing Trevor or I could do to stop it. The only thing that gave us a little piece of hope was to give her a blessing. We called our neighbors the Winkles who we go to church with, Trevor's parents, and Chris and Heidi to come for the blessing. She had a very emotional blessing from her Grandpa Jerry and we all broke into tears. I was given one as well which I was very thankful for. It was relieving to finally be able to let go of all my emotions that I had been holding back all day. After the blessing we were moved down to the Pediatric ICU at about 8:30am.

It was now Monday morning. We were given more details about her condition and more bad news of her blood work. Her red blood cells, and platelets were dropping fast. Her white blood cells were rapidly increasing along with the toxin numbers. We new for sure she had a bad infection and it was getting worse. We did stool samples to determine it was ECOLI and that is what brought on the H.U.S. This kind of ECOLI can not be treated by antibiotics...it will make it worse. She had another catheter placed to monitor her urine output...this would be the first to start to decrease if she was heading towards Kidney Failure. She then was given a PICC line (a permanent IV line in her arm leading to a main artery to make drawing blood and setting IV's easier.) An XRAY was taken of her chest to be sure the PICC line was placed correctly. It was then they found accumilating fluid in her right lung. This is from the fluids she has been given through the past few days which her kidneys are no longer filtering out of her body. After that she was headed down to have a Hemodialysis Catheter placed just in case she would need dialysis. She was put under anesthesia for this. We waited anxiously for about an hour in the waiting room with my Dad and Grandma Harp. She came through the procedure great. The rest of the day was pretty emotional. Labs continued to bring bad news and it seemed we were crying all day. It just felt so unreal. I kept telling myself this was a bad dream. There was just no way this could be happening to my little girl. All Trev and I could do was hold our daughter and cry. We had no idea what to expect in the next few days.

Tuesday was our first experience with dialysis. The most scary thing to watch. Peyton was such a trooper. She was resting most the time. After the dialysis they drew more blood which came back okay. Her toxin levels were down. Her red blood cells and platelets continued to drop so she was quickly hooked up for a blood transfusion. Peyton continues to be lethargic and didn't communicate much other than complaining about her tummy.

Wednesday brought another round of dialysis, a blood transfusion, and platelets. By her next blood results her blood counts were up and the toxin levels down but because the bacteria was still in her system it was only a matter of time before the toxins would start breaking down her red blood cells and platelets again. Her mood is a little better today. She laughed a few times and is beginning to talk a little more. Even though Trevor and I are still so scared for her it gives us just a bit of hope seeing her smile. Even if its just a few times. We had some family come visit which made her a little nervous with all the people around but was nice for Trevor and I to feel some support from loved ones. I went home for some much needed sleep since we havent slept in 5 days now. Trevor and my brother Dane stayed with Peyton.

It is now Thursday...well Friday because its 12:57am. I should be sleeping but wanted to get this all out before I forgot it all. Thursday was a pretty good day. Peyton sat up in her bed for most of it and watch a million different movies. I think by now I can quote shreks every word. She played with some play dough and the Mr. Potato Head she got from the staff here. She had another round of dialysis and this time was little more irritable through it. She is starting to show a little more energy so she's more aware of what's going on...and doesn't like one bit of it...who would of course? Her LDH level (not cholesterol) is going down a bit...good news. We will have it tested again tomorrow to see if there is a downward trend...we want this!!! For now we can just give her body what it needs while she tries to get rid of these toxins. Until then they will only keep taking away what we give her. The staff here is amazing. Peyton has been given toys, books, and blankets to keep. She is currently cuddled up in a cat and dog quilt she was given from the staff. Our Pediatric Kidney Specialist we are working with is amazing. He is very communicative and answers any questions we have. The nurses are very attentive and sensitive to our needs. There is no where else I'd rather have my daughter cared for...she is in very good hands. We have had so much support from friends and family. There is no way we would be able to get through this if it wasnt for all the love we feel from you. Thank you for the prayers, the home cooked meals, the gift baskets of comfort food, and the visits and emails. We are so blessed to have some many wonderful people in our lives. When Peyton grows up and we tell her about this time in her life when she struggled though this she too will feel the love everyone sent her way and be greatful for the prayers and blessings that saved her life. She isnt out of the woods quite yet but I have seen God's hands in her life before many many times and I know he is helping her through this now. I feel the spirit constantly comforting me and telling me it will all be ok. Thank you again for everything you all have given to our family. I will never be able to thank you enough.

I will try my hardest to post on our blog daily with photos and updates so check back often.

Father in Heaven...

Please watch over my little girl. Give her strength to over come this sickness. Give her comfort to get through the pain. Let her know she is surrounded by love. Bless the hands of the doctors and nurses that they might know how to help her, that they might be cautious, be guided and directed by thee. I pray that thou might bless our family and friends. That we might be comforted and given courage. I pray that she might get through this, that she might be healed by thee and recover quickly. I am so greatful to have such a wondeful daughter in my my life. I thank thee for her and pray that we might have many wonderful times together in our future. These things I pray in the name of Jesus Christ. Amen.