I want to give an update, but let me start by clarifying something. We are still using Children's Memorial Hermann Hospital in Houston for most of our care. We have only transferred our GI care. Because Alex was coming in for a GI issue we came to Cook's. In the future if Alex is "sick" we will head to Houston. If he has signs of Pancreatitis or another GI issue we will come to Cook's.
Ok...on to this stay. Let me back up for the followers who are not friends on facebook. Early on Thursday, it was decided that it was not safe to restart Alex's TPN at home as planned. The doctors, nurses, dieticians and pharmacists felt that Alex is too "fragile and unstable" amd at too high of a risk for refeeding syndrome for us to stay safely at home. Refeeding syndrome occurs when you introduce substantial nutrition to a severely malnourished patient. it can cause critical electrolyte imbalances that have to be corrected immediately. So we got several phone calls on Thursday telling us not to start TPN and to set up an admission for Friday. Yesterday, Alex and I were packed and ready at 8:00 AM since we weren't sure when we would get the call to head in. We waited and waited and waited and waited some more. I spoke tot he GI nurse a few times and knew that there were no beds on the GI floor. They did not want Alex on a different unit with potentially sick kids. We finally got the call to head in at 4:45. We were told the room would be ready in 30 minutes. We got to registration and signed our papers at 5:30. But instead of taking us up to the room we had to wait until almost 8:00 last night to get to our room. Definitely not the start I was hoping for. BUT...since getting to a room I have been very happy with every aspect of Alex's care!
Alex's nurse last night was so much fun! She reminded us of one of the our favorite child life girls from Houston (Love you, Kimmie!). Our nurse and the resource nurse were both so careful going over every aspect of Alex's care. There was absolutely no issue with using our home meds (I fight I was prepared to have). There system was great. They took our meds to pharmacy. Pharmacy draws up the meds and labels them. They even say, "patient's own liquid". This way there are no mistakes with pharmacy sending "their" meds. Dr. O had ordered TPN early in the day (long before we were admitted) so it would be ready for Alex. They asked lots of questions as they tried to figure out my confusing boy! Twice when potential allergy concerns came up, they put the brakes on until we had the answers to proceed safely. They brought me copies of Alex's labs (he's had labs drawn twice) without my ever asking for them. They are extremely considerate. When Alex lied down for a nap today, they did everything possible to finish all they needed to before nap time so they wouldn't have to disturb us. Overall, a good experience so far.
As for medically, Alex's labs so far show that his electrolytes are stable. We have been warned it is day two we are worried about. Hopefully, my little man will behave himself tomorrow! Based on the labs from last week, Dr. O has had to start yet another supplement because now he is also deficient in zinc. They continue to be concerned about how many vitamins and minerals he is not absorbing. Also, he started coughing this morning. It is not often, but it doesn't sound pretty. His cbc from last night looks as if he has some sort of virus. I am keeping a close eye on my little man. Seeing that cbc gives me the longing to be back in Houston in my comfort zone with nurses and doctors who "know" Alex and how closely you have to watch him. But I have no doubt that if I need to step in on my little man's behalf, I will be heard.
Assuming electrolytes stay stable (and Alex doesn't get sick) the plan is to discharge Monday or Tuesday.