Going backwards

Maddie has had a really rough 12+ hours, i'm not even sure where to begin.

Yesterday morning they saw a small blood clot starting to form on her central line.  At the time, it wasn't a big deal and they started her on some blood thinners to help resolve it.  A few hours later, she was extubated to CPAP.

While she struggled all day to control her blood gases, she did ok on the CPAP until about 7 PM.  After that, she fought harder and harder to breath (i'll spare the details but it was the scariest night yet for me and thats saying a lot considering all we've been through). They saw an air pocket in her lungs and turned her chest tube onto suction (usually gravity does teh work b/c there are risks with suction). INcreased her oxygen and I worked diligently to keep her binky in her mouth, trying to improve her pressures and seal. NOthing seemed to work and she rapidly fell apart. Around midnight, they finally made the call to intubate again (about 2 hours after i started asking for it).  She settled for a while, mostly from exhaustion.  She is on full ventilator support with really out of control blood gases.  She needed a lot of hand ventilation to keep even close to stable.

Around 6 AM, they saw that her PICC line had come lose and was dumping her "food" (Total Parental Nutrition TPN) directly into her chest cavity, causing more pressure to build up and make it even harder to breath.  They removed the PICC line and rerouted her TPN through her central line.  They also started (continued?  i'm not sure at this point) her diuretic to try and draw the fluid out.

At some point, her blood pressure started to get really low, so now they are talking about restarting the dopamine.  This is three new medications, with 2 access points with a clot in our of them.  They likely will try to put in a new IV or artery line today, always a huge challenge with Maddie because her little veins are so stressed out.

This morning's xray showed that her right chest tube has moved out of place.  They will either reposition it or replace it at some point today.  we don't yet know if this will be easy or complex.

ok, i think thats it for now.  we basically feel as if we are now where we were three weeks ago and she is once again, fighting to survive the next little while until at least one thing gets resolved.

its hard not to feel really defeated right now and have a huge pity party for myself and for luke.  we are surrounded by really sick babies who are here for weeks and months, but they only have one of Maddie's issues. Right now, it feels like we will never get out of here and she'll never be strong enough to come home.