We were released from the hospital yesterday evening around 5:30 pm or so and decided rather than packing all of the Bean's overnight stuff into the RMH room we had, we would just drive back to Chico and sleep in our own bed/crib. Upon release we found out that we will have to make trips to Stanford both this coming week and the week after - first, for a clinic visit to get an echocardiogram and check her prograf levels to make sure everything is functioning right, then a week later for another biopsy. Basically, we kind of have to go back and start over the monitoring process, with biopsies more often and clinic visits more often until they know they have taken care of this rejection.
She seemed to sleep a lot the past 24 hours. She slept all the way home, which ended up being about a 4 1/2 hour trip with stopping to pick up our dog at my parent's house and I thought for sure we were in for a long, long night of wide-awake Bean, but she went to sleep pretty well, woke up and ate around 12:30 a.m. and again at 4:30 a.m. and then I had to wake her up to give her the 8 a.m. meds. She then took a nap from about 11 - 12:30 p.m. today! I'm sure its exhausting for her being in the hospital. They come in and take vitals every three hours or so, so she can never really get a good solid amount of sleep. She is up playing now and seems to be doing well. She ate like a fiend this morning - probably an effect of the steroids. And she definitely slips into a little bit of a "roid rage" every once in a while when she gets upset. They warn you about the fussiness and it definitely has shown up in her since she went into the hospital. Hopefully it will taper off as she gets some of the steroid out of her system.
A lot of people have asked me how unusual or usual it is for this type of rejection to occur. I am happy to report that Bean is pretty average so far - according to these statistics on rejection the average heart transplant recipient goes through two or three episodes of rejection in the first year. This is Bean's second. Her first bout with rejection was well handled by the steroid treatment, so we think this latest treatment will work as well. In addition, her prograf levels were low when we got the biopsy and we had not had a blood test in almost four weeks, so they could have been low for a while now. This would definitely effect her level of rejection. I am going to try to get weekly blood tests here in Chico from now on, just to make sure we stay on track. With the Broviac, the blood draws are not an issue for her and I will feel more secure if we have actual blood tests for levels done until we get the level straightened out for a while. I have heard of another family who was trained to do their own blood draws out of their child's PICC line, but I don't know about that! I like to avoid blood whenever possible...
So, I am trying to get right back into my daily schedule with the Bean, which means I must now go and feed her lunch, which is running late because of her long nap this morning (she typically doesn't nap in the morning, but right now) and then get her out somewhere to enjoy some fresh air! Its cold here, but we may take the dog for a walk in the park before the prediction of rain comes in to play!
Hope everyone is having a good day! Thanks for all the kind thoughts and support over on Facebook. I'm hoping this blog will help me to keep in a little more regular touch with those who are following and provide more information than my status updates!