2:42 pm:

Phoebe finished round 1 of her chemotherapy this morning! She had a restless night, lots of whimpering and feeling bad although she never seemed to be in extreme pain.

Our big issue is that Phoebe has learned all of our medicine giving tricks and has put her little foot down. Before we came to the hospital, Phoebe was a great medicine taker. Today she held her steroid medicine in her mouth for 2 hours and then slowly let it dribble out when no one was paying attention. Last night she started rejecting her Blue Bell ice cream thinking that we had put something in it although we had not. She will not drink for fear that meds are in her drink..*sigh…

So, we are trying the “Phoebe, you will take your meds in 5 minutes” approach and then squirting it in the back of her throat. We have tried this once so far, and she still spit a good bit out, so we’ll see how it goes.

This morning I gave her the ddavp shot for the first time. It went went and neither of us cried. I just finished a two hour meeting with the endocrine nurse and to be honest, it was overwhelming. I don’t think I really understood until now what Phoebe’s hormonal future and the necessary maintenance meds would look like. I have been so focused on her ddavp shots and regulating her sodium, when it seems the big deal is realy her inability to control her Cortisol levels.

I was taught how to give an intramuscular “emergency” shot for when she is not doing well, ie: cloudy, doesn’t recognize us, etc. The cause for this would be that a stressor has been introduced to her life, maybe a beloved pet dies or she has an injury like a broken bone and her body’s inability to control Cortisol levels compromises her. I will carry this shot around for the duration. It will be one of the things I check off my mental list before I leave the house each time. Whoever I leave Phoebe with must be able to administer this shot should the need arise. It holds her over until we can get her to the hospital.

When she is older she will have Human Growth Hormone injections to make her grow, and when it is time for puberty, that will be an intervention as well. When she is sick, I have to alter her standard every-day meds (which are many) based on if she is vomiting or not and re-calculate doses. Oy…I’m horrible at math!

The nurse talked about the importance of having people a hospital familiar with her situation if/when she has an emergency. It made me wonder how we can ever live away from here? So many concerns today…just feeling overhwelmed and needing prayer.