Long lash lady

My nurse Darlene was here to take care of me last night and I had quite an episode for her!  I was awake and active with seizures when Mommy and Daddy got home from work yesterday.  Mommy gave me Versed which didn't help but I was able to cough up a bunch of congestion and then I fell asleep for a little.  About an hour went by and I woke up again with seizures and irritability so we did some suctioning and then I got some more Versed which didn't seem to help.  Darlene had arrived by then and she gave me an Albuterol Nebulizer which didn't help.  There was lots of suctioning going on and I got another dose of Versed and some Hyocyamine.  When I was still battling congestion, a high heart rate and dips in my oxygen level, Daddy finally said, just let her have some morphine.  That did the trick and I fell fast asleep!

Over the past few days I have been on 'round the clock doses of Tylenol to see if it would help with my high heart rate since the doctor though I might be having some pain.  That doesn't seem to be the case, unless the pain is so bad the only morphine will do the trick.

In any case, Mommy and Daddy are pretty sure my Versed and Valium or no longer working, even though we did another increase in my dosage.  The doctor is worried that if we keep going up on my dosage that I may get that dose that stops my heart.  He said there is usually no warning signs and even though we are careful about titrating up my dose, it is still a risk we are taking every time we increase.

My awake times are just really rough for me and the only time I am ever peaceful is when I am sleeping.  Mommy and Daddy are having another call with Dr. Gien again tonight to discuss the changes in dosages we made this week along with our "Tylenol" experiment.  I am sleeping peacefully on my z-flows now waiting for my night nurse Paula to arrive.  I am getting so long my feet are hanging off the end!  Luckily my new, larger z-flows will be here on Friday.  My wonderful Hospice supply "orderer", Haley, keeps getting me these wonderful neat things to try out!

Check out my beautiful eye lashes!  I may not have much hair on my head, but I got the lashes:-)