Treatment Plan

We've done the largest two doses of thymoglobulin. They should have been the hardest on her. I am hopeful it won't get much harder than it has been. DAY 1 took 16 hours. Day 2 took over 10. Today in rounds the plan is that rather than running her treatments every other day and allowing her to rest in between that we are moving to the smaller doses and running them every day for the next 7 days in a row. The dose is going from 1.5 per kilo down to 1 per kilo and we will attempt to run it in over a 6-12 hour period. On Wednesday we will biopsy through her ileostomy and at the end of treatment we will do both upper and lower biopsies in an attempt to get the best picture of the condition of the bowel as possible.

Over night Ashley's blood pressures tanked. They actually began in the afternoon during the infusion and continued all throughout the night. Her blood pressure was monitored every 15 minutes for more than 12 hours. Explain that to our 4 year old. It hurt, it was uncomfortable, and it was not fair. My brave girl took it all and did her best to understand. I'm so proud of her. She is not a baby anymore. She is growing up and learning to cooperate and even help through her tears. In an attempt to maintain solid pressures she was given bolus' throughout the night. Problem was it was not the appropriate fluids that we needed to be running. In the end, instead of helping her it was causing more issues. This morning her hemoglobin was down to a 6. The fluids diluted her blood and bottomed out her pressures even more. This morning things are looking better. She is being transfused right now. She needs blood inside the vessels to give her the volume she needs to maintain blood pressure. We will use lasix to start pulling off the extra fluid that has gone into the wrong places. Its all confusing, I know. It took a long time before I understood it all and could keep it all straight. Anyway...

The surgeon agreed to let us move up to the pediatric floor. This will drastically change our stay. First and foremost it gives a level of privacy. There are no glass walls on the floor and you can't imagine how it feels to be living in a "see through" space. It just feels weird. We also will have a bathroom. Yeah, its the little things in life that bless my heart. I couldn't take it anymore and decided to fight for the right to use the bathroom this morning. At 3 am I got locked out of the unit and couldn't get back to Ashley Kate. So this morning I shared how ridiculous I think it is to not have facilities available to the parents of the patients inside the unit. I'm sure it won't change anything, but I really believe a restroom would have been money well spent over the flat screens in the patient rooms. They are remodeling and in the future there will be a restroom for families, but at this time its not available. Let me just get personal with you. From 3 am till 10am this morning I held it. Unable to pee. I tell you its the little things in hospital life. From now on I'll be known as the mom who lost it over the toilets! Nice title, huh! It may not have happened had I gotten any sleep in the past week, but so what. I shared my concern about the lack of family centered care and it needed to be said.

So, here we are. Our new "old" life. Welcome back to us.

The best thing about our days are hearing from all of you, seeing our friends(who were all once nurses of Ash's and have now moved on to other hospitals. Except for one or two) and knowing that every day we are fighting our way back against this rejection. In the end it may lead us to our home. Staying focused on that day.