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Wednesday, March 23, 2011

Update

Avery spent yesterday in the PICU. She ended up going into Septic Shock on Monday night due to the infection and they had to put her in the PICU so they could administer the right drugs and watch her very closely.

Scary doesn't even begin to describe the night we had. Right after I finished blogging, Avery spiked a fever again and the team on the Oncology floor decided to call the Rapid Response team. This is a team of dr's and nurses and staff from all over the hospital that come to you immediately to assess the situation and help make decisions. This meant 20 people came flying into the room as Avery went down hill. It was a circus. And scary - but we were surprisingly calm. The resident from Oncology kept asking us if we were ok. How can you freak out when you really aren't sure what is happening....so for the time being we were fine. We watched as they assessed and shoved giant amounts of fluid into her little body, one enormous syringe at a time. Finally they decided to take her and we were moved to ICU where another team of Dr's continued to work on her. This continued on until almost 6 am when they finally managed to calm her down and she fell asleep. Avery's body went into septic shock, which means the infection in her body was not able to be fought by her body because her counts are at 0 and she has no fighters in her body to fight infection. Once this happens, Avery's blood thickens making it harder for her heart to pump blood to all of the vital organs. As a result, these systems start to shut down. THIS IS NOT GOOD. So for all of the times we've made you wash your hands and avoid a visit -- this is why. Jeremy and I dozed in a chair for an hour or so before the morning rounds began and then we met with each of the teams to find out the plan for day.

Avery slowly recovered Tuesday morning. As she slept, her BP came up and her heart rate went down. Oxygen levels became more consistent and they weaned her off the Dopamine. By 4 pm they decided it was safe to move her back to 4 Henson. We have never been happier to go. The PICU is a scary place - quiet, private, restricted, controlled. The crazy halls of Henson are much more welcoming even if we have to spend our time attempting to get out of Isolation - when we aren't supposed to be in it.

Today was a mellow day. She has very little energy and her appetite is gone. She will however, eat Reeses Pieces out of Nana's pocket at any point in time. So whatever -- a diet of chia tea and reeses pieces it is. She took a 3 1/2 hour nap that I am certainly going to pay for tonight, but you really can't justify waking up a kid that just spent the day in the ICU with a life threatening issue. So sleep may not be in my future tonight. Oh well, there will be plenty of time for that later on.

The positive to this week of scariness is that we got to see both Grandma Lippold, Nana and GJ. It was very exciting to be able to see them all before we go on our trip to New York. Thank you to all of you that sent prayers yesterday -- it was much needed and it worked. Please keep her in your prayers as we move forward through the weekend and pray that her counts come up and we have a fairly uneventful next week and a half. April 3rd we leave for Memphis and April 11th we leave for New York. Both bring us anxiety and hope, but mostly they bring us closer to the miracle we are so desperately praying for. A rough week for us as a family, but we keep in mind that it could be worse, and we saw a glimpse of that as we walked through the PICU unit yesterday. Once again, we urge you to appreciate what you have and be thankful for each day you have with the ones you love.

Jenn & Jeremy

2 comments:

  1. Avery Anne is an amazing child of God. Glad to hear that you and Jeremy had God's grace and peace during the scariest time of your fight against the ugly beast of cancer. (((Hug))) Auntie Lori and Bob and Maple Jo_

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  2. I do not know you or the Amazing Avery, but I have followed your blog since the beginning. I hurt with you and celebrate with you and pray with you for that miracle. I also share the blog with my students. In trying to teach the concept of empathy to 10th grade boys, Avery has been a master teacher. There is a little boy, Ethan, here in my remote little town of 400 people. Ethan had the same type of cancer as Avery. He was diagnosed at around 2. They didn't go to St. Jude's, but they worked with a doctor in Albuquerque who was a pediatric oncologist at St. Jude's before moving to ABQ. Ethan has been cancer free for four years. He still wears his adorable glasses and his little helmet at recess, but he's an absolute delight. Every time I see Ethan, I see Avery's future. Thank you for having the courage and compassion to share Avery's story. You have no idea how many lives you have all touched.

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