From Julian's COTA journal.
Just a quick one to let you know that Julian got significantly "disconnected" today, which means that he had many of his IV lines discontinued. He actually kicked one out (we believe in protest) off the top of his foot. We think it was part of his plot to "get down, run around". His only IV lines now are his HemoDialysis port, which has an arterial and venous line, both of them being utilized.
He ate part of a "sunbutter and jelly" sandwich today, and they are beginning to up his feeds through his Nasal-Gastral tube which, as Dave explained on the blog, they had to re-insert last night. Julian keeps saying he "swallowed" his "catheter". Technically, this is correct.
Julian is back to being lucid and sunny, and is a joy for the nurses to be around. I, on the other hand, was not such a joy this afternoon when I began to focus on the small picture and worry about the micro-managing of Julian's care. Dave sent me packing to the Ronald McDonald house for a hot bubble bath and a nap. It did wonders for me.
We believe Dave will be going back to Denver tomorrow for the work-week, and back here on Thursday night. That is, unless something major happens tomorrow with Julian, which we don't anticipate. The Doctors are so pleased with how it is going, they call his case boring. The head Doctor, Dr. Alexander, is waiting for whatever Julian has up his sleeve, as is the case with most transplant patients, that something will end up presenting itself is "the issue" that needs to be tackled.
Our prayer is that nothing ever materializes that would make Julian's case anything other than "boring" and successful! =)
We have been so pleased with his care, and thank the Doctors and Nurses that have been involved in the process. Even his nurse from Colorado, Silvia, called me to see how he was doing and let me know she was thinking about him! (Thanks Sil! Got your message!)
We will be headed back to Colorado whenever Palo Alto releases us into the care of Julian's Pediatrician, Dr. Beesley, up in Estes Park, and there we will stay for awhile while we get Julian's meds and protocol completely stabilized. Beyond that? Who knows?! We just take it one day, one week, one month at a time. All we need to know is the "next step".
Thank you all, I'll keep updating you.