13th Update

Sorry this is a last minute update, it has been a crazy week. Samuel is scheduled for surgery around 12:00 tomorrow, Thursday, July 16, 2009. He will undergo three procedures; tracheostomy, G-tube and fundoplication. The trach and G-tube have been discussed for a while now and we are as comfortable as we can be with these procedures. They began discussing a fundoplication as a result of Samuel’s “supposed” reflux. A fundoplication will hopefully prevent him from being able to reflux (no guarantees), thus protecting his airway from future aspirations and pneumonia as a result of reflux. This operation involves taking a small portion of the upper stomach and wrapping it around the esophagus and attaching it with three sutures. This procedure is done laparoscopically (thru five small holes, one of which has a camera). Neither of us have peace about doing this surgery or not doing it, with the exception of knowing that God is in control. Depending on who we talk to, the pros and cons are somewhat the same no matter which way we choose. The biggest difference – if all three are done at the same time, then there is only one time under anesthesia and on the operating table.

In the middle of typing of this update we are still greatly struggling with this decision. After much discussion among ourselves and the doctors, we have changed from what I wrote above and now have decided not to do the fundoplication. It would take me numerous pages to lay out all the discussion over the last few days, but the bottom line is that at this point, we (Mom and Dad) are not convinced that Samuel has a reflux problem. The tracheostomy and G-tube are reversible procedures; however, the fundoplication is not. We are not willing to allow something that will permanently alter his body and has many possible side effects, when we are not sure he needs. At this point he does need the trach and G-tube so there is no problem deciding to allow this. There may come a point that we have to do the fundo, but at that time we will KNOW for sure it needs to be done. What are the risks in not doing the fundo? He has a higher chance of aspirating and getting pneumonia again, but there is no guarantee the same thing won’t happen even with the fundo.

This past weekend, the tape that holds his vent tube in place came loose and the tube came out. I just happened to walk into his room and there were eight hospital staff surrounding his bed. Needless to say that I was a little more than curious as to what was going on. Samuel actually did really well – better than he did when we purposely removed the vent during the trial run and to take pictures. Speaking of pictures, we posted a few of him and the family on his website http://prayforsamuelian.blogspot.com/

On several positive notes - Samuel had his first; absolute, 100%, beyond a shadow of a doubt, “gag reflex” this week. He has had several time when they thought he might have and most of the time he squirms a lot because he doesn’t like it, but this was for sure. I think the doctors have stopped trying to gag him every day. This happened while we were suctioning his mouth. It hasn’t happened since then, but it’s a start. On Monday night he was also moving his tongue around in his mouth, not a lot, but it’s a start. We hope and pray this is the beginning of a permanent gag and swallowing. The last honorable mention – Samuel had his right eye half open and was looking forward. Mom and Dad were at his bedside and he seemed to be looking towards Mom. A few minutes later, Mom walked away from the bed and I noticed that his eye shifted towards me. I thought this might be a coincidence since he has trouble controlling his eyes, so I moved to the other side of the bed and his eye shifted towards me again. I did this four times and each time he moved his eye in my direction. When Mom came back in the room, she saw it one more time before he stopped.

Our prayer requests: that God will continue to heal his brain way beyond what the doctors believe is capable, permanent gag reflex and swallowing, for successful surgeries with no complications and no negative results or progress setbacks (breathing, gag, etc.) from the anesthesia.

Thank you all for your gifts, support and prayers,
Yancy