Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Friday, February 28, 2014

Still at Hotel VCU

Yesterday she spiked another fever around 730 last night and due to another high fever they added in another antibiotic daptomicin. The last temperature she had was last night at 1230am and today she has stayed in the 99 area! Counts were checked overnight and as expected everything dropped needing blood and platelets sometime today. WBC came to .3 but still no ANC, so still neutrapenic!  

Today Emily had a rough day. She woke up swollen this morning and slept in until almost 11, so we knew here hemoglobin was low.  She had a slow start to the day. Today she scratched her nose and it started a nose bleed when she was in the playroom which resulted in her throwing up a lot of blood again! So she was extremely lethargic for a while until the blood was half done! Thankfully no reaction to either platelets or blood. However right now we are dealing with a pretty high blood pressure. She is supposed to get IVIG sometime overnight but will not be able to get that until her blood pressure has come down. The nurse lowered her fluids and explained if after awhile they haven't come down they may have to add in something else to get them to come down. 

Tonight two of our friends from divas and dudes came out and cut all the knotted hair that was falling out of Emily's hair at the hospital. Emily was really tired during this time, but she handled it well sitting in mommys lap. We thank you guys for coming to help her out tonight and make her feel better about her hair! She was having a hard time with it so hopefully she will feel better now. Back to some fun hats for a while, but divas and dudes has also offered to fix up Emily's wig that she has so she will feel better and we thank you guys for helping us with that. You guys have been a part of Emily's journey since the beginning when we came in to get her hair fixed and we couldn't thank you guys enough. 

Thank you to dad for making sure that we are taken care of and running all over town the past couple of days having to get things together at home since we were not prepared with anything for inpatient while and also having to work. We appreciate you making sure we have what we need while we are here and bringing food and clothes to us here and then tonight bringing Emily a special treat! Dad sat with Emily for a while tonight working on a Barbie Lego set for Emily and Emily loved it.

Thank you to My mom for helping out with Brianna today during the day and thank you for Sue and Jojo for driving from PA today to come see us for helping out with Brianna tonight overnight and bringing chili for dinner.

We still don't know when she will be discharged right now. Earlier today I would have thought probably not till Sunday but we are not sure. The plan for tonight is to hopefully get her IVIG going depending on her blood pressure and check counts overnight!  But those things can always change.

Please continue to keep Emily in your thoughts. She is handling this stay ok, but a lot of the stay had been sleeping and not feeling well. Tonight she is starting to feel better and we love that she is feeling better.  It's been over a week now she has been neutropenic. We still wait for results on the labs for the viruses they are checking on but hopefully they are negative. Lastly we also found out today the Homebound has been completed and we will get her started next week working with her.  Emily will be ready when her counts are up to visit with some of her friends from school because she misses them!


1 comment:

  1. Keeping sweet Emily and her family in my prayers and heart and praying tomorrow brings much better news and Emily will feel better!