It has been a week since we returned home from the hospital. Lots of changes have been required for the three of us to adjust to additional feeding schedules. John has been vigilant about asking if what we are doing to him is going to be an "ow" or not - including dressing him for bed, etc.
During the day, he doesn't put up too much resistance to his bolus feeds - apart from holding our hands so that we can't place the tube into his "button" (whole in his stomach). However, the night
feedings that use a pump on an IV poll have been emotionally difficult for him. He wakes up crying every night and
it can take a long time to settle him down.
He was diagnosed through a biopsy of his stomach as having an H. pulori
infection, which we are now treating with several medications through his
stomach tube. So, it is possible that he
is having some pain/discomfort from the infection. It is more likely, though, that he just doesn't want to been connected to something during the night.
The poll itself has been an item - something he regularly said "night, night" or "good bye" to in the morning when he realizes he is free from it. In order to create less anxiety for him, we covered the poll up with his favorite swimming towel (which happens to be Angry Birds).
Apart from this, he is himself - finding new ways to play with our air pump and being goofy in this hat.
According to our scales John has gained more weight. However, he is eating very little with his mouth. This is big time discouraging as we have spent hundreds of dollars and man-hours helping him eat. We are working with the doctor on finding a balance between tube and mouth feeding so that he will be hungry enough to really eat meals.
Your continued prayers for his development and growth are
much appreciated and for good nights of sleep!
Prayers on the way!!!
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