9 Months

Patrick turned 9 months old today. We finally got a smile, which I took as a good sign.  Still, he'd been kind of off, sleeping his way through the past few days. They switched him to IV Lasix (the diuretic), because he's been quite positive on his fluid intake, which means he will have to keep the PICC for now. He also started sweating profusely again. In addition, he has lots of congestion. We have been percussing his back a ton, but it sounds like it's getting worse rather than better; you can feel it when he coughs. Given all this, they moved up the echo they were going to do tomorrow to today.  It happened late in the day, so they had not had a chance to view the images by the time they rounded, but the report indicated decreased heart function and increased dilation of the right ventricle.  They are waiting until they have a chance to view the images before they make any changes, but they discussed perhaps putting him back on milrinone (the cardiac output drug).  I plan to make rounds tomorrow and start asking questions about whether and when we should talk about putting him on a transplant list. My research suggests he may already be considered a Pediatric 1B candidate, which is the second highest status, but I don't know enough to be certain and would like to start getting information together.

Needless to say, today was a rough day. I feel so helpless. I hate having to put him through all of this. He's spent so much time in the hospital that he doesn't sit up without support yet and even lets his head wobble like an infant at times. I hate seeing him attached to all the tubes and not being able to fall asleep with him on my chest.  Cognitively, I get that he has to be alive and well for any of these other things to matter, but emotionally, I just want to detach him from everything and take him home for snuggles. Hopefully, the docs will have some good ideas come morning. I am doing my best to hang on to hope. Some days, it feels like that's all I have left.