So much going on

WOW.. we have been on such a rollercoaster the last few days. Raffy was doing so well on Tuesday so I decided to go home and see Fred and the kids that afternoon and stay the night there. I got back to the hospital late Wednesday afternoon hoping that Raphaela had been taken off the ventilator and put on CPAP but it wasn't to be. All the pressures and the rate were down to the minimum so it was looking good. The noradrenaline had been stopped and the midazolam and fentynal (sedatives) were also being weaned. The play therapist had also been in my absence and left me black & white flashcards, books and a portable DVD player to play classical music to Raffy. We were also the lucky recipients of a gorgeous quilt made by the Victorian Quilters. This is a group of ladies who makes quilts and deliver them to the children throughout the hospital. I really want to get involved with this once we are out of hospital.

Then I got a call at 7am Thursday morning from our nurse saying that Raffy had pulled her ventilator tube out at 3am that morning and had struggled with breathing on her own. She WAS breathing but apparently it was quite laboured so they quickly put the tube back in. The decision was made to send her for a bronchogram which is where they put dye down into her lungs to coat the airways and take an x-ray to see how her airways are. The bad news is that she has bronchomalacia which is a fancy way of saying that she has a floppy airway. The good news is that it is a mild case and only the left side is affected. Hopefully slower weaning will help strengthen this up. As Raffy needed to be awake for the bronchogram, the doctors decided to stop one of her sedatives and cut the other down to minimum. This was effectively making her go cold turkey (like a drug addict) and she had a very unsettled night as she was having withdrawal symptoms. After trying to get her to sleep with Valium with no effect, they eventually started her sedatives back up this morning so she pretty much slept all day today.

Her PD cathetar was meant to come out today but as her tummy is still a bit distended, they decided to do an ultrasound first to make sure it wasn't clogged and not draining properly. I think we were forgotten about cause it is now 10pm and they still haven't been to do the ultrasound. Hopefully they will be around first thing in the morning so we can find out what is going on.

The cardiac surgeons have their big indepth meetings on Monday mornings so I am hoping that they will decide on the next course of action for Raffy as there was still some concern that her breathing issue is connected to her heart and the patch they put on her aorta.

At the moment I feel like we turn one corner and are then met with another brick wall. I can honestly say that this is the most emotionally, physically and mentally draining thing that has happened in my life so far. Raffy turns 1 month old tomorrow and has had to endure more in that short time than most people do in a whole lifetime.