Just pluggin' along ...

I have to say the RSV has improved. She still has an occasional coughing spell. The key to treating RSV is making sure the mucous is moving ... which I think it has. Suctioning is the main therapy and it's amazing how much these little guys can store! She had an excellent day eating yesterday. She has to take in 20 ounces in a 24 period, so with the 10 she gets on the nightly continuous feeds she should take in no less than 10 during the day. Yesterday she voluntarily ate 12! However, today was a little bit more difficult to get the food down. Everything I've read about VSD says the poor eating is normal. The three doctors Claira saw at the hospital were Pediatric Intensive Care specialists and all agreed that her eating problems were due to her heart defect. One explained that as she gets older she will struggle more and more because her body is going to work harder and require more blood flow as she gets older. The frustrating part of this story is that the cardiologist still isn't convinced that the problem is heart related. She said in our last office visit that if the pediatrician and I don't find anything else wrong she would do a heart catheterization. In some cases the doctors can close the holes, but in Claira's case this will only be an observational tool as the FDA has not approved the balloon technique to be used on babies her age. But since Claira had RSV, they would have to wait another 6 weeks before they can do anything to her heart.
Why does this matter so much to us? If it's heart related, then once the holes are fixed she has a greater chance of resuming normal life. If it's not heart related, then what is it? How long will she have a feeding tube? Will they have to surgically place a permanent tube directly into her stomach?
Tom and I have decided to get a second opinion and are going to see another Pediatric Cardiologist on February 22nd in Oklahoma City. This may just confirm what we've already been told ... if so, then we know that we're doing the right things. Thursday we will see her pediatrician, Dr. Hughes and Friday her cardiologist, Dr. Lundt.
In the meantime, I'm getting better and better at putting in the NG tube. Not because I like it, but because I know I have to. Yesterday I was trying to trim the tape around her tube. I was being soooo careful of staying away from her face that I cut the tube! I never wanted to be a nurse or a doctor and here I am ... with my own little patient! I do remember, however playing doctor a time or two. I promise you ... it never involved sticking things down my friends' noses!