PICU Day 13

Thank you all for "storming the heavens" for our Noah. Someone was listening...

Noah continually amazes us with his resilence, despite his frail, malnourished state. Everything about the surgery and post-op has gone so well. He was extubated this morning and went straight back to the CPAP with absolutely no difficulties. He even spent a short while off the CPAP this afternoon, sat up in bed, watched TV...shocking those who were just discussing end of life plans with us yesterday. Yep...that's our Noah. Another miracle to be where we are today.



The past couple of days Noah was having sinus arrythmias and bradycardias (his heart rate would drop in half and his blood pressure would sky rocket). Yesterday he had an ECHO and EKG done to assess heart function and everything looks ok. Today this too, seems to have stopped, and he has had no further episodes...no one has an explanation for what was causing them, but just something that we will continue to watch.

So where do we go from here??


Everyone is only thinking in short term plans right now...how to get Noah out of PICU and back on the ward...one step closer to home. There are too many unknowns to plan much further and many things need to be discussed and sorted out. Right now we have this precious line for much needed nutrition and blood products, and yet, we know that it was these precious lines that have caused so many complications, almost taking Noah's life in the past. And we also know that short of very extreme measures, this is the last line he will get. So I can only hope and pray that we have made the best decision we could have, given the alternatives.

The security of the line does give us the ability to focus on the other issues holding him here in PICU. The first plan of action is to get him off the CPAP...he will continue to have short trials throughout the day, until he can be completely weaned off. Still needing ventolin masks, but those too are slowly being weaned. And secondly, the bleeding has to be under control...he has had no bleeding the past 2 days, so we will try him off the Pentoprazole infusion again tomorrow and see how he does. The rest of the issues can be managed and sorted out on the ward.

Feels as if we have been here 13 weeks, rather than 13 days, but starting the new year with a renewed hope.



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