This will be brief. Maybe. :)
When you have multiple specialties involved in one procedure/hospitalization, it can get challenging. Will is still in ICU because the neurosurgeon does not want him on the airway floor, ENT will then not let him out of ICU until 24 hours after the trach is out (which occurred this morning), and so this morning, they both said, "He can go home tomorrow...to Virginia." To which Endocrinology said, "Um, not only no..."
Endocrinology was called in by the previous ICU attending (They change each week.) so that Will would have some level of continuity of care when leaving the ICU. Dr. T at home had emailed the previous attending to provide a level of instruction regarding how to care for Will. The two points that were reiterated were, "Move slowly. Do not be in a rush to discharge him." and "Listen to Mom." Oh, well, that is a vote of confidence I am just not sure is wisely placed. :)
Will is still on TPN and is taking in less than 300 calories a day. He needs to orally consume 2600 calories, or at least close to that, in order to completely come off TPN, according to endocrinology. So they have decided to slow the rate of TPN, encourage Will to eat more, and watch him. The duration of observation is a complete unknown.
The major issue of the day...the needle in Will's port through which all of his tpn and fluids go has to be changed weekly. So, today was the day. He was deaccessed, took a shower (Oh, he looks and smells so much better!), and then he was supposed to be reaccessed. When the nurse started to reaccess him, she inserted the needle, there was a pop, and Will started crying. This child does NOT cry over being accessed. He seldom even flinches. But he was crying. She kept trying to adjust it, and I finally told her to remove it. She did, then called the special team who works on central line access. Pam arrived and eventually the decision was made to once again attempt to access. So, she offered for me to help since I access him three or more times a week. Well, when I felt around his port to actually insert the needle, the port felt funny. (It is totally under the skin; you don't see it.) I could not find its edges like I normally do, and the top felt odd. I had no desire to put a needle in Will when I could not guarantee success, so Pam tried. It was yet another disaster. We eventually went for a chest xray, which showed that the port is in the correct location. So tomorrow morning, we will talk with a surgeon to determine what our options are. This is not a complication that I even contemplated. We cannot leave Cincinnati without IV access.
So, they had to start a peripheral line (a regular IV in his lower arm) in order to restart the TPN and fluids. It took three attempts to make that happen.
Needless to say, it was a very long day.
So tomorrow, we meet with the surgeon, and we will likely be moved to the neurosurgery floor til everyone agrees to discharge us. Apparently, they want us back in two weeks from today for follow up. So if we don't get out until later this week, and we have to be back ten days later...do we stay or do we travel twice? What can Will handle? Stay tuned for tomorrow's episode of' "As Will's World Turns."