Day plus 31 - Update

A quick update...

I really can't believe we've been in the hospital for 44 days today.  The great news is that Gabrielle is feeling much better.  She's talking again, she's smiling and playing with her toys and very interactive with the nurses, doctors and of course us.  Her blood counts are still coming up and as of today her WBC count was 3.7 (5.3-16 normal) and her ANC's were 1.18 (1-8.5 normal)!  YES Gabrielle!!  Her hemoglobin counts were low yesterday so they gave her another blood transfusion but that was the first blood transfusion in 10 days.  This morning she also had another platelet transfusion but until today she managed to hold her platelets on her own for a whole week!  What a star!

The transfusions combined with all her medications do make her uncomfortable - nausea?  Allergic reaction to the blood products?  It seems to be a guessing game with babies, but we make sure to give her benadryl and gravol to keep her comfortable.  She does show symptoms of HVG (host versus graft disease) with a rash, vomiting, red face and puffiness.

Gabrielle is still hooked up to oxygen, has her feeding tube and she is still working to clear her lungs.  We have a physiotherapist who comes every day to do some strengthening exercises and she also helps her to cough and clear her lungs (she gets paid to suction boogers!).

I love that she is doing so well.  We no longer have to sleep with one eye open jumping at any gagging, or vomiting.  She is finally sleeping well at night and only wakes up at 4am when the nurses come in to do vitals but I don't mind because I get to pull her into bed with me and she sleeps like a log:)

Highlights of the past few days...

1.  Thanks to the combined efforts of my beautiful sister and parents, Regan and I got to have dinner at home together with the boys for the first time since March 11th!  My parents came to the hospital in the afternoon and sent me home, and Julie came in the evening and stayed the night with Gabrielle in the hospital.  It was so nice for Regan and I to be able to spend some time at home together with the boys.

2.  Today, nurse Kary, hep-locked Gabrielle, took her off her oxygen, unplugged her feeding tube and we were FREE!!!  Gabrielle and I spent a part of the afternoon outside on the terrace together soaking up the sun.  It was magical.

We continue to be so grateful for the amazing nurses, doctors, physiotherapists, music therapists, and social workers at the hospital who help all of us adjust to life here, and who do everything possible to make sure our sweet Gabrielle gets through this procedure.

We are also grateful for all the love and support we've received from everyone.  From cute pictures from cousins; to gift certificates and meals from family, friends, colleagues and parents of former students; and to everyone whose reached out to us with nothing but love and support, thank you with all my heart.

What a journey this has been.  The kids who go through this are unbelievable.  Gabrielle has been our hero every single day and I am amazed at her strength and spirit through this.


Happy Easter everyone!

Amy
xx