Tuesday, October 12, 2010

Lexi Update!!

Jen, Lexi's mom just posted this on their CaringBridge website:

Tuesday, October 12, 2010 10:38 AM, EDT

Well, for the past week and a half I kept meaning to update the site to share all of the positive things that keep happening and changing almost on a daily basis. Unfortunantly though, the news I have to share now isn't the greatest. Alexis has a double line infection in her central line (the broviac port in her chest). For precautionary measures she was admitted to the PICU, but they just told us that since her blood pressures are now stable and she is doing so well they are going to move her up to J5. It has been 14 months since Alexis has had a broviac and this is her first line infection. Even our nurse practitioner, Faye, just told me how impressive this is! Sometimes kids get line infections after each round of chemo. Unfortunantly though this infection picked a bad time. We were suppose to leave for Disney on Sunday the 17th. At this point it looks like the trip will be postponed.

It all started on Friday night at 1:30 in the morning. Alexis woke up and started vomitting for the next two and a half hours. When she woke up on Saturday morning she didn't feel so well, but before lunch she convinced herself to eat something. Alexis had an incentive for eating. Her and Aaron were invited to Sydnie's birthday party (a little girl they know from their babysitter Tammy's house). Alexis felt pretty good at Sydnie's party and really enjoyed seeing Sydnie and Abby another old friend. Aaron stuck right by his sister at the party but had fun making a glitter guitar and a boy necklace!

Then on Saturday night, Alexis had another vomitting episode, a killer headache and low grade fevers. Sunday was a horrible day for Alexis. She felt pretty miserable for most of the day. She didn't have a fever but she wouldn't eat anything. Then around 10:45pm Sunday night, as I was goingto bed for the night I found Alexis in the bathroom. She started chugging water, had some diarrhea and asked for a drinkable yogurt. I was excited that she wanted something to eat. Then after, I touched her skin and realized she was burning up. She had a fever of 104. I called the hematologist on call at the hospital and they advised me to bring her in for evaluation.

Alexis and I arrived at Children's ER at 12:30am Sunday night. Her temp had dropped down to 103 but her blood pressures were irratic and a little low. We waited in the ER forever and then they decided to give her an IV antibiotic that runs over 1 and a half hours before we could be transferred to another floor. Alexis was able to get some sleep in the ER but I only managed to get abnout a half hour worth. The chair I had to sit in, in the ER was a hard wooden rocking chair. I had the chair covered with blankets but even that didn't help much. Finally around 6am the ER told us that the Hem/Onc doctors (J5) felt more comfortable sending us to the Picu to be on the safe side since Alexis was so sick. I didn't want to be transferred to PICU because the nurses on J5 know Alexis and are familiar with her normal low blood pressures but after I had some sleep I felt better about the situation. Once in the PICU, Alexis became stable rather quickly. Within a few hours they had given her so much fluid that her blood pressures rose to numbers that I have never seen them.

If you would like to catch up on Lexi's story, you can read all about her here. Please keep her in your thoughts and prayers.



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