Day 43- A really bad day

This is such a sad place, almost unbearably depressing at times. Miracles happen every day here, I know that... Every day Holden wakes up is a miracle. There are babies on this floor who are even worse off than Holden, and the fact that they're even alive is a miracle. So this place is full of enormous blessings, but such sad lows too.


The past 24 hours have been mostly lows... Holden had his PD cath taken out this morning. They did the surgery bedside, with no vent. He came through with no complications, but crashed pretty quickly afterward. He was working so hard to breathe, and it wasn't working for him. His O2 sats dropped and his resp rate went up. Xrays showed fluid building up in his lungs, and it was the same pink frothy stuff as last time. He had flash pulmonary edema, where blood flow gets backed up into the lungs. They tried him on CPAP to see if that worked (CPAP is the next step to get pressure into the lungs, before turning to re-intubation), but it wasn't enough. They re-intubated him, but couldn't get him stabilized on the conventional vent either... They had to put him back on the oscillating vent. He's stable now, but this has set us back to square one. This is where we were in the beginning of November. I hate even typing that. They've done an echo already to see what's going on in his heart, but we don't know the results yet. Nobody knows what caused this to happen, although there are theories... Hopefully we'll find out soon. I really don't want them to tell us that this is all coming from the pressures in his heart again... That kills our hope of taking him home to wait for a transplant.


I wish the lows stopped there, but they don't. Sweet Taylor received his wings last night, and his heart is whole again. Please pray for his family as they grieve the precious baby they've loved and cared for the past nine months. I don't know what to say to them... What can I possibly say? What can anyone say? There's a sense of guilt you carry around when your child lives and another doesn't. And just to make situations like this more difficult, you know that at any time, it could be you... "There but for the grace of God go I."


Many prayers are needed in this unit tonight... I hope to have a less depressing update tomorrow...