Wednesday Update :)

OT therapy from Monday morning

Todays Update

The GI surgeon came to talk to us today about placing the g-tube (button). They will add Coop to the schedule on Friday afternoon. The surgery itself only lasts about 15 minutes but as we know there is a lot of the time spent in surgery prep and recovery. This is a relatively small surgery and with low risks but we are told that any surgery will increase his agitation and possibly set us back a bit on the storms. Afterwards, he will no longer need the tube in his nose. Someone questioned why he couldn’t keep the NG tube (through his nose to his stomach) until he relearns to eat. One reason is that the NG tube may interfere with his swallowing because something is running down the back of his throat also the NG tube can be pulled out very easily and he will probably need access to his stomach for quite a while so we have opted to do something a little more convenient.

The swallow study has been postponed until further notice due to his feeding issues. The speech therapist explained that if your gut doesn’t feel good the natural response is to not allow anything in your mouth. She said it is very important to make everything that surrounds eating a very positive experience and that we should not force anything. When he is opening his mouth by himself and seems to be comfortable with having food in his belly we will try again. Note to self: No more prying his mouth open to shove a sugar covered binky in his mouth. The doctor has changed his formula to one that is partially digested so he has less gas and hopefully will feel better. I think he is a little bit happier with this new food but not completely. If this doesn’t work the next step is to add another medication to help his system empty quicker. Other possible reasons to his irritation are gastric reflux, having his arm and leg braces on, just becoming more alert and not knowing how to express himself.

The following pictures are how we spent Sunday afternoon at PCMC. We went to church here and then took Charlie on a walk in his new cruisin' machine. Charlie had been upset all day so we were trying everything to calm him down. First the stroll down the hallways then a great nurse got special permission to swing in the gym. Nothing worked to calm him down so that is what clued us in about gastric discomfort

Rocking in the chair with his two boys then Britt lost interest and the other two fell asleep.