Written on Friday...but kinda not posted on Friday. :)
Will is finally stabilizing. Still moderately tacchycardic, but stable. The autonomic dysfunction seems to be wreaking less havoc on daily life.
The port was accessed successfully Thursday and he received his full infusion with little discomfort or irritation. He is extremely sensitive to the adhesives, so I contacted the infusion company and they are very graciously sending several different options for us to try.
We requested a very specific nurse for Will since ours apparently resigned. For the record, can I state that I love this new nurse? She is a strong believer, gentle, very experienced, knowledgable, kind...and loves pediatrics. She is truly a gift from God at this point. I will have to deaccess the port from this point forward (I have pulled his IV's almost since the beginning.) The procedures for accessing and deaccessing the port are different than your normal IV, especially in a person with a compromised immune system, so precautions (like how to put on sterile gloves without desterilizing them) need to be learned as well as the need to pull out the IV without dislodging the port.
So the question has been posed as to how we are doing. Overall, we are still putting one foot in front of the other. The main project that Billy has been working on for forever was successful and is drawing to a close, so he may be home more. Camden is struggling with his OCD a lot, and Caroline is sruggling with abdominal pain of unknown origin and is not wanting to eat. Emotionally how is everyone doing? Well, that is the trickier answer. To say we are fine is a lie. To say that we can't keep doing this is also a lie. We are somewhere in between...
The adjustment of being the only decision maker in the home to now needing to actually check with Billy is a big adjustment. Not because I don't want to check with him, but because it is no longer a habit to check with him. That obviously can create some stress.
Andrew never complains, but at the same time, that means you never really know how he is. Chris is working at the Christmas tree farm, so he is as happy as a clam. Will varies every day from fine to not feeling well from happy to angry...it is like living with a constantly changing ocean where the storms blow in without warning. Camden is highly reactive, Ben flies under the radar, and Caroline is Caroline...sometimes she feels great and sometimes she doesn't.
To say we are without hope is wrong. To say that it is just hard...well, that it is.