Update for Saturday and Sunday

Saturday was a good day. Peyton was pretty tired but comfortable. Our regular tests went by with out any hiccups. Later in the afternoon I was able to hold Peyton and we took a ride around the unit in a wheel chair. It felt so good to cuddle her into my arms since I hadn't held her in almost a week. She enjoyed be able to get out of her bed for a while. Labs came and went with minimal changes except the LDH which continues to go down. Peyton is still throwing up and having occasional fevers. They are hopeful the labs will continue to bring better news.

Another Hemodialysis

Nap with Daddy

Kisses

This morning at around midnight Peyton suffered a seizure. They were going to move us out of the PICU yesterday but there was no room available....thankfully we were still in the ICU when this happened. She was immediately rushed to CAT SCAN and intubated with a breathing tube. The CAT SCAN came back clear of any swelling or bleeding in the brain which is good. They have put her on heaving medications to keep her relaxed and prevent any other seizures from occurring so she is in and out of sleep. She had an MRI and a MRA on her brain this afternoon to confirm there was no swelling or bleeding. They were also concerned about bleeding in her abdomen but an XRAY determined there was none at this point. She also had a procedure called plasmapheresis today which she handled very well. This procedure takes out her current platelets that may be tainted with toxins and replaces them with brand new ones much like the dialysis does with her red blood cells.Tonight she finished her 6th round of dialysis which emptied almost 2 cups of extra fluid from her body. She will probably continue to have dialysis through the remainder of her stay. A second and third stool culture were performed and came back negative for ECOLI so we have reason to believe the bacteria is no longer in her body, or at least her in her bowels. However there are toxins still in her system that are making her sick. She is still urinating and her diarrhea has decreased significantly which means her kidneys are still trying to work and she has less blood waste entering her colon...really good news. Her labs have shown some improvement but are still wavering a bit. Here are the current numbers

White blood cells are down to 19.0
(normal is 5.0-13.0)
Hemoglobin is down to 7.2
(normal is 11.5-13.5)

Hematocrit is down to 20.3

(normal is 29-41)

Platelets are down to 28K
(normal is 150K-420K)
BUN is up to 28

(normal is 6-20)
Creatinine is up to 2.12
(normal is 0.17-0.35)
Lactic Dehydrogenase is down from 1554to 1533
(normal is 130-360)
THIS IS THE MAIN # WE WATCH TO SEE IF SHE IS IMPROVING...WE HAVE A WAYS TO GO.

(Most of these results will change with the next blood test because of the dialysis)

We are also waiting on results of her blood culture taken today to determine if her blood is still infected with any bacteria. We should be getting those on Tuesday. We are planning on being in the PICU for at least another week.

Today has been so overwhelming. Getting a call at home in the middle of the night that my daughter has suffered a seizure is not the news I was hoping for, but it keeps us in the PICU for another week which is where I really want her to be until she is 100%. Here she is being monitored continuously and the doctors and nurses are only a few feet away. I am grateful I wasn't here to experience this horrible event. The last thing I want is the picture of my daughter suffering through a seizure running through my head over and over. It breaks my heart though to think it will be in my husbands and mother in laws. I keep looking over at her picture tonight and see the Peyton I miss smiling in pigtails and holding her little sister. I wish I could turn back the clock and maybe have prevented this. It is no ones fault she is here. I keep telling myself that everything happens for a reason. I know that God would never give me anything I couldn't handle and that every trial has it's lessons. I have learned that children are a gift from God and it is not one to be taken advantage of. I could so easily loose my little girl with this disease and never get the opportunity to see her first day of school, or help her plan her wedding day, or see her become a mother. I sympathize with all the mothers out there that have lost a child and it breaks my heart to think I could be one of them. My purpose of life has changed, my priorities have changed. I thought my children were number one in my life, but as I look back at how I used to spend my time as a mother, I know I could have done better. It is my promise to my girls that I will never waiver, I will never again take my time with them for granted, and I will always look back at this time and be thankful that my eyes were opened before it is to late.