expect the unexpected

Yesterday was an incredibly long day...seriously I am still in awe of just how many twists and turns it took to get us where we are now.

Camryn was scheduled for a blood draw, ekg, echo all in preparation for admittance on Sunday to get settled in for a central line and then arsenic. Well...that's not entirely how the day went.

We got to the lab bright and early as the lab is insane at the medical building...seriously, so many people. Camryn endured another poke and got through a lab draw...at that point we went to the echo and that was a breeze. After the echo we had the ekg done and our day was moving along well...I ran a copy of her ekg up to the doctors in clinic and gave them our cell number as we were told to wait until they checked out her labs from the morning. We went to the patio area of the new hospital and enjoyed a morning snack. Camryn and I had gone into the gift shop to do a little distraction activity. We came back to the table and Jason said they had called and she needed blood.

At this point we were still okay...blood, that's okay. We know that her hemoglobin is low...so we head up to the procedure center.

As we were getting her settled in with an IV which is no easy task she is freaking out crying, wanting to go home...and the doctor comes in and explains that her blood levels are a mess. Her clotting factors are completely off and it would not be in her best interest to send her home as her blood could start clotting or bleeding and that could be were dangerous.

So...through tears I heard that her levels were bad...not that we haven't heard this before, we just didn't expect it.

We got a transfusion...platelets...cryo...and waited for a bed to open. At 6pm still no bed so we had to be moved over to the ER to wait there...let me say that is not the best place to wait with a 4 year old. We waited in the ER for about 5 hours and thankfully a bed opened on the 3rd floor at around 11pm...between 11 and 2am we were getting settled in and trying our best to keep Camryn comfortable as she was very tired...annoyed...feverish...just feeling lousy.

Thankfully Camryn had a good night...and she got some much needed rest. She's up now watching a movie and she ate breakfast...so she's having a much better start to the day. Today should be uneventful far as too many procedures, but as we have learned to expect the unexpected.

Nothing is a given...

As tears flowed down my eyes yesterday for having not been able to say good-bye to Wyatt...for not being "prepared" for all of this...for just wanting this nightmare to be over. Seriously, I'd love to just wake up from all of this...

But that is not to be...

Camryn is very sick and we will have to endure whatever comes our way in order to get her better...even if that means the unexpected...

Yet, in the unexpectedness of now...there is comfort to be found amongst familiar faces. Last night the charge nurse was one of Camryn's most favorite nurses and today many familiar faces have stopped by to say hi and check in on Camryn.

I'm beginning to see and understand that her care community here at UCLA is just as devastated by all this as we are...they thought they'd won too. They thought they were through this battle...there is some comfort to be found even in the midst of the unexpected.