Post-Op Day 2

Ruby and her tree of pumps

Ruby Tubey with a cute little bow in her hair

We liked the bow better in her hair but she apparently didn't...so now it's on her forehead

Interior of the CICU

We seem to have finally straightened out what we will do with Ruby's G/J tube. For those that are unaware Ruby has a G/J feeding tube that has been invaluable in helping her grow over the last few months. It has virtually eliminated her horrid reflux, and therefore we have considered it to be her savior. However, Ruby's heart surgeon, Dr. Tweddell, feels that the tube must be pulled before he can close her heart. The tube's proximity to her open chest apparently creates a high risk of infection. Therefore, our beloved tube must go! So, after an extremely stressful two days of figuring out how to pull this tube, endoscopically or through the stomach wall, the doctors have finally come to a consensus that seems reasonable to us. Reasonable, but not pleasant. So tomorrow they will surgically remove the tube through her stomach and suture the wound. Then after Dr. Tweddle is able to close her chest, they will take out the sutures and place in a regular G tube as a temporary means of venting her stomach and keeping the tube track open.

Other than her tube issue, Ruby is doing fairly well. Her blood pressure and heart rate have reached a far more acceptable level due to the medication she has been receiving. Her urine output has increased since the doctors have prescribed Lasix. One concern that still remains is her high temperature, but it has been slowly falling with the treatment of Tylenol. It reached a high of 39 degrees C last night and is currently 37.6 degrees C.

What is concerning and frightening are the times when Ruby stirs and writhes. I can't imagine the intense pain she is feeling and it terrifies me to know I am powerless in helping her. The nurses have been extremely attentive in managing her pain but every moment she stirs I cringe for her. It truly is awful that any child should go through this, and although some people like to say things like, "you will be a better person because of this" or "Ruby will be that much stronger" I truly can find no good in her defect. I wouldn't wish this much pain on anyone, even if it meant they would come out "better" on the other side of it. The reality is that this isn't a test from God or a testament to what great parents we are. It is a result of a genetic defect--an imperfect sperm or egg that regretfully was missing a piece of DNA. And our poor beautiful girl is paying the price for that insolent cell.

I personally have spent the day trying to keep Dan calm, wrangling the doctors, and caressing, kissing, and singing to Ruby. Sometimes I am afraid to touch and talk to her, though, because she seems to wake more when she hears my voice or feels my touch, so I usually try to remain quiet. I have asked Dan to bring some music for me to play her and we will beginning to retrieve some of her musical toys in so that she can hear them. At this point I both fear and anticipate her waking. I will be so glad to see her beautiful eyes once again, but I certainly don't want to see them full of tears. Hopefully things will continue to go smoothly and she will feel less pain as time progresses.