Difficult days

Everyone seemed to be worn out yesterday trying to recover from our rough day at the doctors office.  I had a rough Monday night with my new night nurse Beth.  She is going to be watching me every Monday and Thursday night (Yay!!).  I really broke her in having lots of seizures and secretions that we were finally able to get under control with morphine.  Then I was able to fall back asleep until early in the morning until I woke up again with more seizures.

That seems to be the same pattern over the last few days.  I have had much more awake time but not in a good way.  I was up most of the day today, but finally fell asleep after my increase dose of morphine.  I even slept through all the noise my loud brother makes when he gets home from school!

So tomorrow is another trip which I really hate!  Since we were not able to get blood on Monday at the pediatricians, we are heading to the Children's Hospital to see if they can get some blood from me.  I have been retaining water and it is very hard for them to find my veins which makes drawing blood very difficult.  The will use the blood to check the phenobarbital level in my blood to see if we either need to increase my dose or stop it all together and try something else.

The doctor is also going to check my kidney function and electrolytes.  Since we are making the trip, we will also take time to visit my neonatologist/pediatrician Dr. Gien.  I am hoping we will have an easy trip!