Is this week over yet?

This week has been a pretty tough one.  It started out normal, just a typical Monday in the hospital.  Played in the morning, central line dressing change, nap, played all afternoon, visited with a friend, Ava decided she wanted to floss her teeth and then she went to bed.

Then Tuesday came...Ava's central line broke or I guess I should say somehow sprung a leak.  I suspect it was because fluids were pushed to hard through the line that wasn't working as well and a hole popped through.  Regardless, it broke and our nurse called the IV team that "specializes" in repairs to fix it.  So this meant another dressing change to go along with it.  A dressing change is painful because they are tearing the bandage off of her already very sensitive skin and this was her 2nd dressing change in 2 days.  I was a little concerned during the repair that it was not being done properly since it did not mirror what was done during her last repair.  (i.e. put in a splint and wrapped in guaze and tape to dry for 4 hrs.  I was told that everyone does it a little differently)  After the repair was done, I rocked Ava to sleep for a nap and noticed there was blood all over her shirt.  I pulled up her shirt to find that blood was leaking through the repair out of her dressing and onto her shirt.  Makes me a little nervous to know that these people "specialize" in repairs.

BAD Repair!

So, I asked that the nurse that had repaired it properly the last time be the one to repair it this time.  So now we are on dressing change #3 in 2 days and her 2nd repair in just a couple of hours.  NOT FUN!

Wednesday started off with yet another dressing change now that the repair was done properly and dry, the repaired line needed to go under the bandage to prevent it from breaking again.  Wednesday also included a platelet transfusion.  Ava's platelets were very low because her bone marrow is not currently producing anything and won't until next week at the earliest.  For those of you that have read the blog before, you know that a platelet transfusion only occurs after Ava has been pre-medicated with Tylenol, Benedryl and Hydrocortisone since she has bad reactions to platelets.

Thursday arrived and her labs were a bit disappointing.  She did not get the bump that we are used to receiving from a platelet transfusion and Ava was practically where she started at the beginning of the day Wednesday, well slightly higher.  The nurses and doctors decided to let her have the day and that we would do another transfusion on Friday.  Ava had a normal morning of playing and then took a nap around noonish.  I stepped out to grab some lunch and when I got back after just 45 mins, she was up, she usually naps for 1.5-2hrs.  She woke up screaming so our nurse (who is so sweet) was in the room rocking Ava to see if she would go back to sleep.  A few minutes after I had arrived back to the room I was kissing her cute bald head and felt a huge bump.  The only thing I could think of was that she hit her head on the crib and that must be why she woke up screaming after only 45 mins of sleeping.

HUGE Bump!

I have never seen a bump this big before on Ava's head (or Addison's for that matter!), so I asked the nurse practitioner to come in.  Needless to say, Ava received another batch of platelets on Thursday afternoon!  Ava was breathing kind of funny on Thursday evening at bedtime.  It seemed like she was having a hard time catching her breath.  Vitals and lungs both were great so we just let her be with an oxygen and heart rate monitor on her overnight.

Friday is here and she's doing the weird breathing thing again.  So she's on vital checks every hour instead of every 4 hrs and we are waiting to see if she develops a fever today.  If not, we will have to do a virus test and may end up doing chest x-rays today as well.

Is this week over yet?!!

The bright spot of this week is that Justin and Addison come home today.