Tuesday, February 24, 2009

Pictures will soon follow. Tonight I just wanted to give an update on Wes' recent trip to Shands. Dr. Collins is looking at sinus surgery for Wes as a last resort at this point. He had a swallow study, which again shows a beautiful swallow and him protecting his airway like a champ for the first portion of the swallow study. He had a thin liquid, then pudding consistency, next barium cracker sandwich, and last he washed it down with thin liquid. The last step revealed an issue. nasopharyngeal (np) reflux. Basically the liquid he was drinking washed up into his nose around the back of his soft palate. The soft palate should met the back of throat closing off air and food from his nose. It looks as if his soft palate is not meeting the back of his throat, because it is not long enough or it is not moving properly. Both issues that some children face with cleft palate and requires surgical repair.
The speech pathologist did not see any aspiration. After I left my mind began to race, so I called back and discussed the possibility of Wes aspirating as he is trying to coordinate breathing and swallowing during these episodes of np reflux. Many times I have seen liquid coming from Wes' nose and him taking these quick mini swallows and trying to catch his breathe. The problem with catching an episode of aspiration like this is the length of time a child is exposed to radiation from the videofloroscopy. She agrees this is a very reasonable explanation for his aspiration.
Otherwise Wes trip was again left us with no answers or plan. Dr. Collins wants Wes to be seen by a GI doctor. Wes was diagnosed with reflux as an infant, but this has not been an issue and appears to have resolved. Today I emailed questions and faxed the swallow study report to Dr. Vicari, who repaired his palate to get his opinion on the next step for Wes.
Tonight was Wes first growth hormone shot. The thought of this night has been weighing heavy on my heart for sometime now. I stood there with the needle in my hand, my heart in stomach, and my breath held. Wes was asleep, but quickly woke up screaming. Poor little guy, hate to think of this nightly routine. Anyone who wants to know how big the needle is or at any point refers to it as a little needle, just remember it is big enough to be a NEEDLE.

Thursday, February 19, 2009

My boy is home and doing well. Wes was actually discharged Saturday night. Getting to a computer to update was not possible, since all of the diaper changes and showers of vomit finally caught up with me Saturday night shortly after arriving home. Then I managed to rush through the virus and head to Gainesville for Wes' appointments Tuesday. Of course it has been a busy week here at the Taranto house. I will post more soon with updates on his latest appointments.

Friday, February 13, 2009

Last Friday night we thought Wes had caught a stomach virus. Friday and Saturday night were rough for Wes, filled with vomiting and watery diarrhea. (quick dashes to the bathroom, changing sheets, looking for a towel to sleep on...) Sunday, Monday, Tuesday, Wednesday the vomiting stopped, BUTT the other end did not. He stopped eating and drinking. We were relying on his g-tube, even with this he was not holding on to anything. He lost 2lbs in less than a week. Thursday Dr. Curry felt it was time to admit him to pump up the fluids.
So here we are at Tallahassee Memorial Hospital. He was admitted Thursday afternoon. Poor little guy was already beaten down and had to endure four attempts at an IV and two attempts to cath him. His veins kept collapsing. Last night and today he has been getting some much need fluids.
Unfortunately the diarrhea may continue for up to 2 weeks. So far stool cultures from Tuesday are clear. Last night blood cultures were drawn and new "samples" taken today.
My little smiling guy did not have that shine in his eyes today. This has drained everything out of him. He did not even have the energy to enjoy or sing along to the singing gram Miss Jenny sent. (Thanks!) Just before going to bed he did seem to perk up and even ate 1/2 of a banana and a little jelly toast (ok, at least the jelly). He of course did not consider it toast until there was jelly he could lick off.