Post-Op Days 11-13

Ruby's personality has been slowly returning to us. Dan and I have received a few precious smiles, beginning yesterday and continuing today. We have to work a bit harder for these smiles than we did before, and Ruby is still extremely irritable, but we have seen glimpses of her true self these last two days. We've also been able to hold her more and more, which has helped considerably during her fussy moments.

What plagues us is her discomfort. The doctors decided to try feeding her through the "temporary" G tube yesterday. We are not holding out much hope for this working and are frustrated that they are unwilling to replace the G/J tube they removed. Because of this we are unsure if she is in pain because she is still in withdrawal, or from her tummy and chest being sore, or from possible reflux. She has vomited twice since they resumed her feeds. This is considerably less than when she was last fed into her stomach, but it is more than when she was fed through her J tube. She is gagging and coughing more frequently, but she has been doing that since she was extubated. In short we just don't know what's going on.

Dan and I plan on talking with the doctors tomorrow about Ruby's care plan, specifically regarding her feeding. I have many concerns about G tube feeding her, even if she can handle the volume. If this is the case then she will still need to be vented 24/7, which in my opinion is even more difficult to manage than if she were J fed with a pump. In addition to this, at the moment they are feeding her continuously anyway, so I don't see much of a difference between this type of feeding and J tube feedings. It is clear to me that this will be the issue that keeps Ruby here the longest.

The doctors and nurses have also been weaning Ruby from the oxygen. She is down to 1/8 of a Liter per minute, and on this volume she functions fairly well. Her oxygen saturations typically reside in the low to mid 90s, but occasionally she does make it to the upper 90s. The nurse tried turning off the oxygen completely today but Ruby's sats fell into the 80s. When we spoke with a resident about this she said that her oxygen dependence indicates some type of lung disease (which we already know she has) that should get better in time. Sadly, however, this may mean that we have to live with the oxygen for a few more weeks. The doctors are still confident that she will be able to live oxygen free eventually, but right now Ruby's lungs can not fully function without it.