Tonight we noticed that Emily's forearm on her PICC line side was noticeable swollen. We were worried she may have a blood clot so we brought her into the ER. unfortunately we were correct, Emily has a massive blood clot on the vein where the PICC line is. At first they said she would be admitted because of the seriousness of the condition, and then somehow they reversed that decision and sent us home with blood thinner. I really thought we were over blowing things tonight and this was going to be nothing. why can't Emily or us get break? This is so hard.
I have to admit that I do not agree with the decision to send Emily home. The decision was made with the Oncologist, and consulted with a a Hematologist. So I have to accept their decision but I don't like it and would not sign the discharge papers. I won't be sleeping for a while. I do understand that people with far more experience than I will ever have made this decision but it's hard for me to accept anyway.
Emily will be seen again tomorrow and I'll learn more about what's up. Updates when I have them. They told us there would be unexpected challenges along the way, this is one of them, and I am having a very hard time accpeting it, I love Emily so much and I am so worried about her.
Em's new hair
Happiness is a new head of thick hair.
Buddies
Dec the Halls
Emily decorating tree at Festival of Lights
Emily, Tracy, and Haley at Intuit's Winter Wonderland for kids.
Gingerbread House
Tracy and Emily at a Brownie Event
Really, we're in Hawaii.
Emily and Haley with Santa
Don't worry Haley he's nice.
Emily 1 day before Phase 4
Does anything beat Chocolate Cake?
Emily at AT&T Park
The Giants "Good luck charm"
Sunset at Tahoe
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Sisters at Tahoe Vista Beach
It doesn't get better than sisters spending time at the Lake
Thanks to Lori Smith, Emily's teacher, who participated in Relay for Life in Emily's honor.
Chris, Em, and Haley in SF
Emily Easter 2008
Happy Easter
Em in her hospital bed
6 comments:
Chris and Tracy this blog really conveys the ups and downs that you are facing along your journey. We are so sorry to hear that you had such a rough day. You are so right for fighting with the doctors/hospital if you do not feel in your heart comfortable with the decisions. It must be so scary as a parent to be sent home when your baby has such a serious condition. Not only do you have to deal with your emotions but you also have to be "on" to handle the physical task of making sure that nothing further happens to her. You both must feel so physically and emotionally drained. Continue to fight for what you believe is right for her best care. We are thinking of all of you all the time and send much love and best wishes.
This is all so hard. Just when we feel we can relax a bit, something happens.
I'm so glad that Tracy is a nurse. I'm sure she has had many experiences with doctors and can tell when they are right and when maybe they should be questioned about their decisions. If you don't feel like you can trust the doctors, then trust Tracy. She has the experience to know more about how to tell what's OK and what doesn't feel right.
This is all very scary. Remember to breathe. Emily will get through this. We love you all. You are in our prayers all day, every day.
Lots of Love,
Auntie Diana ~^..^~ and Uncle Marty
Just want you to know that you guys are in our thoughts today. Hope Emily's arm is improving and that all goes well when she sees the dr.
Love,
Stephanie, Gray, Ben, Lucy
Your family is always in my thoughts and prayers. I hope Emily's arm feels better real soon - she most certainly deserves a break. I admire your strength and courage through all of these ups and downs. Your family is truly amazing.
Love,
Lori Smith
Hello,
It is Theresa Downey again. I know it is very scary having that blood clot. I am sorry you have to deal with that. My daughter also had a large clot at the end of her line right next to her heart. Her face and arms were not able to drain well because of it and she looked very swollen. We also had to take care of it at home with shots in her belly of a blood thinner. It did work though. I thank the Lord. You guys are doing great and Emily is such a brave little girl.
Take care,
Theresa
I'm sorry you guys had to go thru all that last night. I know you must be in a fog just getting by sometimes. It makes it harder to trust anyone especially when it has to do with your child! I hope it doesn't happen again, but pls know you can call anytime of night and I can crash on the couch if you need to go to Packard. Try to remember your blog entry a few days ago how great the Packard staff is....they really are awesome and have Emily's best interest. hugs to you all-Katina (who is sanitizing her hands constantly to stay healthy for you if needed!)
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