I don’t know how to explain today. Many ups and downs as usual but overall we are all happy that Bean’s oxygen requirements overnight came down to 45%. Clearly, he enjoyed sleeping on his tummy and it helped him tremendously.
We spent most of the day watching Bean being gently vibrated by the oscillator. There is nothing really to do in the ICU because there is no child-care to be done. Occasionally we wipe his mouth or moisturize his legs but that’s about it. Lots of time to chat with the nurse and ask questions, which is helpful.
I missed morning rounds because of an ill-timed coffee run, so Craig represented us there. Da came for a visit and told Gavin some stories. Later on Bubby and Auntie came to visit too.
We were waiting for most of the day to hear the results of the biopsy from
pathology. Finally, our staff doctor came to talk to us in the late afternoon. The results are that there are no results. They expected to find some damage to the blood vessels, indicative of vasculitis or VOD, but they found none. Also no sign of infection of any kind. Although everyone insists that the biopsy was very beneficial, we can’t help but feel a bit at a loss. There are some theories as to what is plaguing Gavin but none of them are concrete.
Our next option is to go ahead with a course of high-dose steroids, to see if this is helpful in reducing the inflammation that clearly exists in his lungs. We’ve been told that this may work or not. We can only hope and pray that it will. He will receive these steroids over the next few days, and will be closely monitored for side effects.
In other difficult news, we discovered this evening after turning him onto his back again that an air pocket has developed in the lung where they did the surgery. A tube was left in there to prevent this from happening, but apparently it is in the wrong position to do much good. Wonderful! Gavin has had four chest x-rays today as various things have been checked out for positioning. The most recent one showed an improvement in the air pocket (called a pneumothorax) so we may not have to take any drastic action just yet. Drastic action would be another chest tube to fix it.
Today was not entirely gloomy though. Gavin’s oxygen needs came down enough that it was thought safe to put him back on the regular ventilator. As we speak he is sleeping quietly without the constant noise of the oscillator. We are hoping to see yet another improvement tomorrow, and praying that no one calls us to go downstairs tonight.
This course of treatment must work. It must work. Please pray that this situation begins to resolve by the end of the weekend. It is so very terrible to see your child lying helpless in a bed and covered in tubes.