Phone call from the pulmo

Finally I got the call from the pulmonologist. He told me they compared Arianna's chest x-rays to those in Dec. 07' and Jan 08'. He believes there is improvement from Dec 07' but not much from Jan 08', which is the time she was in the hospital with her respiratory episode.

There is clear signs of cardiomegaly, which means her heart is enlarged. Something she has always had and will have until she gets a valve placed.

There is also pulmonary edema (swelling) present, which is due to her heart function. Because she has no pulmonary valve that makes more blood go to her lungs, therefore causing the swelling. This will not go away until she has a pulmonary valve placed. He asked when her next heart surgery will be and of course I didn't like talking about that. I try not to think about those things. I told him what the cardiologists have said and he didn't say too much. Just that it will be up to the cardiologists when the surgery will be needed but we have to consider her lung function as well. If there begins to get increased pulmonary edema then we will have to start talking about surgery.

She also has hyperinflation in her lungs. He explained this to be something seen in people with asthma. This is the first concrete evidence to prove that Arianna indeed has asthma. We are to keep the albuterol inhaler for when she is sick but he does not want to put her on anything else at this time.

They also saw some high density in her right lung base which they cannot exclude the possibilty of a previous lung infection. Remember this x-ray was done with she was 100% healthy so that wasn't great news. We have always been told her right lower lobe is diseased and no one can tell us why or what is really going on there. :(

So with all of this news the doctors says Arianna is a child we really do not want to see get a chest cold/infection. He explained the need to keep her away from large crowds, sick people, and lots of hand washing. I told him how we stay at home and only go to family and friends houses that are healthy. We only take Arianna to small stores for quick trips but even that is kept to a minimum. He want to do everything we can to keep this little girl as healthy as possible. Even just the little head cold she had caused her sats to drop to 89 while sleeping. I am happy to say she did not need any oxygen with this cold, just a few puffs from her albuterol inhaler and she was good for the night.

Unfortunatly with the cold/flu/RSV season this means I can no longer do my hospital visiting. I'm really bummed about that because I've received a few calls the past week with little ones having heart surgery in the upcoming weeks. I love offering that kind of support to these families and I've been the only one visiting withing our support group. This is the hard part about running a support group when you have a child with so many illnesses. But Arianna is #1 in my life and this is what I have to do to ensure she is healthy and well. I'm hoping over the next year to get more people visiting at the hospital so it can continue year round.

Well I'm off to bed at 2:40am. Thats what happens when your daugher stays up till 1am the night before and actually sleeps in till 11:45am. It was nice sleeping in that late but not making it easy to fall asleep tonight.