If it is not one thing......

So I have been thinking we could explore some time away from the hospital.  Maybe we could figure out some time that was not infringed on by a clinic appointment, a dressing change, drugs that need to be picked up, maybe we could just go, and be done for a week.

Silly Silly Sally.  We went to clinic yesterday and it was looking grand.  The line let loose of the blood required for labs.  The weird bumps were just dry skin.  The cold will just be here for a while, Ellie Mae is making attempts and it has not become pneumonia so every on is thrilled.  The "bleeding" happened in record time.  So we walked out and had until Friday ahead of us. 

I decided that since I had been so so worried about the line and the everything I would just take the day and do only the things I wanted to do.

That last 2.7 hours.  When will I learn not to answer the phone.  When...... her levels are not right.

Back today or tomorrow for a bag of IVIG. Her immunoglogbluin is way low so she needs an infusion.  Her tacrolimus is high and her head re-affirmed that this morning.  

 See even Lucy is miffed.

I guess I have to reach back into my memories of her first few weeks.  Her new immune system is must shy of four months old and it is not ready to sleep all night.  It is impossible to put the baby to bed and watch a whole movie or drink a hot cup of coffee.  I better go take a shower while the baby is sleeping and do a load of laundry.