This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

November 30, 2007

Friday, June 18, 2010

Things are changing fast. We spoke to the GI doctor last night, and for the time being Michael is back on Reglan -- a drug we really hate. It makes him so grumpy and unable to sleep. Last time we were on this drug, Michael slept from evening to morning but did not sleep at all during the day. Already, with only two doses in him, the grumpies are coming out. He has been whining most of the morning and won't even fall asleep in Mom's lap. So far he is distractable by watching Mickey Mouse Clubhouse and Sesame Street, but I think the car ride to the doctor today will be a disaster.

The feeding every two hours has decreased the vomit, but it hasn't made Michael very happy. He thinks he is hungry all the time (and the Reglan doesn't help). The doctor has indicated that a feeding pump immediately post-op is likely. As I understand it, this means Michael will be on a machine 3 out of every 4 hours, which will be very hard for an active little guy. We'll learn more today. I have a feeling that Baby Einstein and Sesame Street will become a staple for awhile, since he won't be allowed to do much else. I keep thinking this will make post-op even harder than it would otherwise be, but we will do what we have to.

We also spoke to the Plastic Surgeon's office again. They are not going to cancel surgery at this point, even in the face of a daunting reflux problem, but we are all on notice that the success of the surgery is at risk and we need to do all we can to minimize the potential risk. It is a vicious circle -- the antibiotics are contributing to the stomach upset, but the antibiotics are necessary for surgery. The air in Michael stomach is causing some of the vomiting that is putting surgery at risk, but if we have the surgery, some of the air will go away because the palate will be closed and the air won't be able to go that way anymore. The G-tube is undoubtedly causing some irritation, but the first step to getting rid of the G-tube is getting Michael's swallow fixed, which means his palate has to be closed .... you see the nested circles.

We'll post more after we talk to Doctor GI. At the moment, we are about to try to feed Michael a full meal (instead of the 1/2 meals he has been getting since yesterday) to see if the Grumpy Medicine has had any affect.

Assuming, for the moment, that we will go down the road of keeping Michael on this Grumpy/No Sleep Medicine, and we have to have a feeding pump .... then MOM and DAD will need some help with TV programs that won't drive us NUTS to watch over and over. There is only so much of Elmo's friend Mr. Noodle that I can STAND in a given day. For awhile we can see if holiday cartoons will work, but if y'all have DVDs of fun TV shows you wouldn't mind lending us for a few weeks, I promise we'll give them back as soon as Michael is back to his usual smiling self.

More to come -- maybe even later today.

PS -- does anyone know if they sell videos or DVDs of "Bunnytown," one of the programs on Disney Playhouse? If someone has a few moments to search the internet for me, I would really appreciate it. Michael would like some DVDs of "Bunnytown" for Christmas.


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