Doctor Rounds

Hi. Here's the latest with Mitchie from a medical perspective...

On Monday, we went for a surgical consult with the surgeon our GI recommended he work with to give Mitchell his “PEG” or g-tube. We heard how the procedure would be done. Everyone we’ve met whose child has one reports being very happy with the outcome, looking back wondering what ever gave them so much concern. It’s still hard for us as the planning for it continues. This surgeon says we should expect linear growth to follow (although Mitchell has gained half a pound recently.) She also said that if we don’t make eating “recreational”, he should continue to eat by mouth, but there is a chance he’ll lose interest if we rely too much on the tube for feeding him. Next steps are have an anesthesia consult and get a physical from M’s pediatrician. The surgery and hospital stay need to be scheduled as well.

On Tuesday, Mitchell had his 2nd video swallow study. It's really cool to watch the x-ray of Mitchell's throat and airway as he drinks and eats. You see the liquid going down. As found with his first study more than a year ago, he aspirates thin liquids. I guess we can suppose that the aspiration has finally caused discomfort contributing to his resisting drinking. A suggestion was made to thicken his liquids. Although he has such a weak suck, they are concerned thickening too much will only make it harder for Mitchell to use the bottle, furthering the rejection. The result will be shared with the GI and likely support the feeding tube direction.

On Saturday, Sunday, Monday and Tuesday - Mitchell has barely slept and wakes up at 2 or 3 AM after being put to be at 9:30 pm only to cry for an hour straight or so. Most days he doesn't go back to be at all. Even the Melatonin we've been giving him hasn't consistently helped. So today (Wednesday), I called the neurologist's office. The nurse worked us in to an appointment time to see the doctor this coming Monday. Until then we are to try upping the dosage of the Melatonin. We'll see. Mitchell doesn't sleep much during the day either and does have inconsolable bouts, but they are so much easier to manage when you yourself are well rested.

So we are in a phase of making the doctor rounds. Pray they go well!