Since I can’t sleep I figure now is as good a time as any to send out a quick update.
Liam’s hanging in there. He’s more alert and aware than he’s been since admission and seems to have little pain or discomfort from the surgery itself. We are able to at least put medicines in his stomach via gtube which is a big deal since his two most effective seizure meds have no IV substitute forcing us to keep the boy pretty snowed under phenobarbitol to prevent breakthrough seizures until a few days ago. All day long today he was happy and playful.
That’s the good news. The more frustrating news is that Liam is taking more time to resume feeds than we expected. After a full day at a 10ml/hr continuous formula feed Liam’s belly distention increased and he grew incredibly uncomfortable. We stopped feeds for a day yesterday. It was a rough day. Liam was in pain and though there wasn’t a fever or high white cell count to indicate something more serious the delay itself was gut wrenching. Karin and I were miserable yesterday and so was Liam.
Liam got better. After relieving some of the pressure in his full belly he was a barrel of fun last night and I already mentioned how great a day he had today. Yep, he got better which is probably why his mother and I had such a good day. Yesterday shouldn’t have been as hard as it was really.
It was our own fault, we were getting too cocky. Falling back on the old routines and nonchalance the helps us cope day after long day.
All hospital stays have their ups and downs. Three days before we were scheduled to go home from the NICU Liam caught a nasty pneumonia. Nine days later and after 152 days in the NICU Liam had his first seizure. That time at least we still went home the next day.
Later, after months of ups and downs, and a mere hours before we were supposed to be discharged from the PICU after our first stay there, Liam’s ventilator pressures went all wonky. After an hour of trying to figure out a reason why, we decided to spend another night in the unit trying to figure it out. Like a half an hour after that after getting him and his ventilator back in bed I realized that the pressure issues were being caused by the amount of tubing in his circuit without a humidifier in-line. Liam and his lungs were just fine all along. We confirmed my theory with the doctors and respiratory therapists but with the decision already made and a med given (even though it was only albuterol of all things) we spent an extra day in the hospital bringing that stay’s total to 109.
So what I’m saying is that even when things seem to be going just right or about to end there’s always a chance of a step backwards. Every single hospital stay that Liam has had has contained a set back or two (or three) so why did we think this one would be any different?
The slow steady progress we saw for the first 12 days shouldn’t be forgotten because of one minor set-back, but I think that since so many people were throwing around the H- word we naively started to believe it a little ourselves. We even started guessing which day it might happen.
We Should know better.
We do know better.
We don’t even like Liam to hear the H word in the hospital because as you’ve read he likes to change our plans at the last-minute. We don’t tell him we are going until we get to the car now.
Anyway, Liam’s back on feeds tonight at least, even if it’s at a slower rate. It’ll take a bit longer to make it to the H-word but he’ll get there. Just gonna take a little time. He’s at least keeping his (and in turn, our) spirits up in the meantime.