Surgery Tomorrow

Brody was transferred Sunday for surgery Monday... his bicarb levels were too high and we were postponed until tomorrow... pending an appropriate level in the morning. In the meantime his surgeon was switched (which wound up being a great thing but upsetting when we first learned this) and the NICU at St Christopher's is not in any way living up to expectations of a retputable children's hospital. Brody's first 24 hours there were very scary. There was a huge mess up on the transfer notes from both Abington and St Chris's and egos and arrogance in the way of Brody getting what he needed respiratory-wise. I watched him gray and dusky for hours begging the staff at St Chris's to give him the breathing treatments that were helping him at AMH. After begging, pleading, fighting and crying they began his nebulizers but still refused to add a treatment that we know helped him but the attending there claimed there was no evidence for or against.... if there is no evidence against its practice why the hell wouldn't she just give him what he needed???  While in this state of distress I watched the spark escape from his eyes and was terrified about what could be happening neurologically because of their stubborness.The facility is old and dirty and there is not even a comfortable place for us to sit bedside or anywhere else for that matter. I just want him getting his surgery and getting out of there and back to the comforts of AMH where they know him and are willing to do anything required to make him comfortable.

Cameron has very slowly been making small progress with his feeds however threw up all over me twice in the last few days. The nurses gave him a dum-dum lollipop this morning to encourage his sucking-it turned his lips blue... very cute.

We have been back and forth between both hospitals and getting absolutely no sleep. My sanity is far gone but we find a way to pull it together to continue fighting for the boys. We just want them comfortable, out of pain, and home where they belong very very soon. They are 4 months old now... adjusted age 2 weeks. I hope to be able to post pictures soon.

Cam- 6 lbs 10 oz
Brody-6 lbs 3 oz