We're Home!

It feels so good to be home! The hospital is no place for rest that's for sure!

The surgery went extremely well. Things went in without a problem and the only issue the doctor had was that Lucy's esophagus was fragile and bled easily. We really lucked out and the head of the department ended up doing the surgery and taking charge of Lucy's care for the first 2 days we were there. You just can't get better treatment than that!

After surgery things took a downhill turn. Lucy came out of surgery highly agitated, which can be normal, but after that her vitals starting looking pretty bad. After we were admitted and taken to our room, Lucy continued to get worse- her O2 levels were in the 70's, her heart rate was high, respirations were high, and she had a rising fever.

She looked awful and I had a moment where I was ready to break down out of fear that I had made the wrong choices for Lucy. Watching her deteriorate was frightening and I wondered if I had made a huge mistake by submitting to the surgery. Doctors and nurses continued to come in and out and were really concerned that something was very wrong. They said that if she got any worse or if she failed to show marked improvement by morning that things would be considered pretty serious. They debated back and forth about whether or not to get additional tests up and running throughout the afternoon. She ended up on oxygen and needed 3 boluses of IV fluids before she finally even urinated. She felt awful and was terrified.

By around nightfall she had stabilized and by midnight she was on 50% room air, by morning she was off the oxygen. It was quite a wild ride! I have never felt such a relief in my life to see her come off of that oxygen.

After that the next couple days were filled with meetings with the GI team, nutritionist, and trying to figure out a correct feeding schedule in order to fit in enough liquids and calories. The overall concern was hydration. Lucy is chronically dehydrated and its been slowly wearing her down, but at the end of the day her stomach can only handle so much volume at one time which makes it very hard to fit it all in. We attempted a larger bolus feeding of 7oz but that ended up making Lucy sick so we had to limit her to a max of 5oz at a time.

Now that we are home we are still working on what works best to meet her feeding goals. Its kinda like having a newborn baby again- I feel clumsy, awkward, and unorganized. I know it will get easier with each day though. Most of all I can't wait to see her sunken eyes disappear and her rosy fat cheeks reappear!

Lucy is doing pretty well. She was up walking around today and by evening has been insistent that she do almost everything without help. Shes stubborn and its working in her favor right now! She even got up and went across the street to show our neighbor her costume for Halloween!

Thank you all for the messages of love and support!! We could truly feel all the prayers! There is no way we could have made it through this week without our family and friends.