Good Night

All,
Madeleine had a very good night and we are making great progress today. If you know me at all, patience in any way shape or form is not a strength of mine so if I had my way we would be out the door by now! Luckily cooler heads prevail. I'll review where she was when she came out of surgery and where we are now and where we need to go to get out.

When she arrived back from the OR (operating room) she was on 55% O2 (we breathe 21%), with a rate of 22, meaning they gave her 22 breathes per minute whether she liked it or not. Rate is necessary when you are a. really sick and cannot breathe on your own, b. so sedated the nervous system cannot be relied upon to breathe. She was coming out of anesthesia so they kept her on the rate over night. As of about 2 minutes ago she went back on CPAP which is her normal home setting. CPAP means that the vent is giving her no manual breaths, rather every time she breathes in it gives her a little extra push to make sure her lungs expand. For all you snorers in the Bushey family, this is the exact same process that the sleeping mask goes through.
As for O2 she is now down to 40% and we suspect she'll be off that by tomorrow some time.
She is in a great deal of pain right now and it is pretty tough to watch.In the grand scheme of pain she has been in in her life, it's not all that terrible, but knowing that we did this to her and she was happy at 8am yesterday makes it tough. They are giving her morphine and just like last time she had surgery it doesn't seem to giver her that much relief. Madeleine responds to good old Tylenol. Unfortunately, because the doctors want nothing in her stomach regular Tylenol is a big no no. So after 2 years I have grudgingly agreed to allow them to give her a suppository. A TINY sliver of Tylenol in the hopes that it calms her down.

On to the belly, she came back from the OR with no bowel sounds and none expected. They are under strict orders to not put anything into her tummy until she poops and has good gas. If only we could channel her daddy for this activity -we'd be at home already! This morning we called to check on her and the nurses said there were a few bowel sounds but we needed more before we proceed. We are REALLY hoping that something happens before Monday because if not she'll need a central line to give her IV nutrition. This is not the end of the world but with IV's comes bacteria, with bacteria comes infection, with infection comes a longer stay in the hospital. For more info- go back to Nov 2008 blog posts to refresh how a line infection can cause problems. All of this being said - no one thinks we'll get that far and we will be able to advance feeding before we get to the point where she needs IV nutrition.

All in all, things are right on track if not a little better than we anticipated. It's nice to see our old buddies of the CICU all of whom remember a sickly skinny little girl. Dr. Berger her PH doctor is the attending this weekend and I am THRILLED that he is here. It makes the countless bags we changed through September to accommodate schedules, worthwhile.

After surgery yesterday we rushed home took showers and ran off to the wedding of our friends Jason and Thalia. While at first glance you may think we were insane however we had a wonderful time celebrating their marriage and internally celebrating our own surgical victory. Today we are sitting in her room doing the hospital thang and going to do our best to distract ourselves from realizing how quiet and lonely our house is when she isn't there.

Have a wonderful weekend folks. We'll post updates as we get them.

Kirsten, Brent and Madeleine