I hope all you moms had a great weekend. I want to wish my mom a Happy Mother’s Day before I get into all the news of the day. I Love You Mom!!!
We spent part of the morning at MUSC visiting Caden’s ENT (Ear, Nose, and Throat) doctor. The visit was scheduled to discuss the z-plasty or palette plasty as it was referred to today. Caden has shown some great progress in trying to speak. The diagnosis of a sub mucus cleft palette is known to hinder a child’s annunciation. We expect to get the surgery done during the last week of June. This will be an inpatient surgery in the main hospital at MUSC.
The ENT also recommended botox injections into Caden’s saliva glands. We have been seeking some help with secretions since Caden was an infant, but the choices are limited, especially with a cardiac patient. There are a couple of drugs that can be used to decrease secretions, but the don’t play nice with the heart. The most extreme option is to surgically disable the saliva glands. Since Caden has had botox in his cricopharyngeus (upper esophagus sphincter muscle), we know that he tolerates the botox.
Speaking of swallowing, there is an outside chance that this palette reconstruction could help Caden to swallow. He is still 100% tube fed, even for medication and hydration purposes. The ENT and speech therapist want to see Caden get another modified barium swallow before the surgery. This is two-fold. They want to see if there is a need for botox in the esophagus and they want to get a baseline for how much help the palette surgery helps the swallowing. One other test that has been requested is a manometry. This test is coming on a recommendation from from someone who has never examined Caden. We know very little about this test and still have some questions before we sign the bottom line to get this one performed. My biggest concern is that we were told that the test is supposed to require a probe be left in Caden’s esophagus for 24 hours. This information was relayed to us from the GI department and is contradictory to what I have been able to find on the Internet. The link above and a couple of other places like the National Institutes of Health say that this probe should be removed after approximately one hour of testing. The pediatric GI folks have been one of the less impressive departments in our two and a half years of interaction with MUSC, so we will proceed with caution.
I did get a glimpse of the blood test results ordered by the allergist. It looks like the numbers for egg whites, egg yokes, and dust mites were elevated. We still need to get the official word from the allergist though. I am interested to see if Caden will get prescribed an EpiPen since Epinephrine can cause a fast or irregular heartbeat.
The cold and flu season has ended and by the grace of God, Caden dodged the RSV bullet. We did end up in the pediatrician’s office today getting Synagis shots just to be on the safe side. The dose is so big, they have to split into two shots, one for each leg. Did you know that as of this week, we have gone eleven months without a hospitalization. PRAISE GOD!!! The last hospital stay was a planned visit for the pacemaker install in mid June 2006.
No news is good news as far as the new little boy goes. He is a very active little guy. I don’t know how these moms carry such movers and shakers around in their tummies.
Fun Stuff
I want to leave you with a few more pictures before I close this post. The boys and I have really been enjoying the weather. We played outside for quite a while on Saturday. Here are the pictures. You can click on them for larger copies.
Riley Climbing the Slide
Caden Throwing a Ball
Just a Swing’n
Hide n Seek
Caden
I hope you enjoyed the pictures. Thank you for continuing to keep and our family in your prayers.