We had our surgery consult on Wednesday the 16th. Theo was great the whole time--from the minute we put him in the car seat and went to the hospital until we got home, he was very calm and content. He even went to sleep in the examining room. We met Dr. Hanes who seemed very nice. He says the the gagging and choking is due to acid reflux which is common for babies in general, but highly common in babies with problems like Theo's--it's most likely a nuerological issue. He also told us that having a g-tube placed in Theo's belly may not fix that, and could possibly make it worse. He also feels that the procedure is not a simple one and carries many risks which bear serious consideration. I was glad to hear that my worries about the seriousness of this surgery were not unfounded--I have heard so many people tell me how "simple" the procedure is. Dr. Hanes also believes the best course of action is to wait until the results of the November 30th MRI to see what is happening in our special baby's little head. If the tumor is growing quickly and the prognosis is a few months, he doesn't feel the surgery is worth the risk. General anesthesia carries many risks and the surgery itself, Dr. Hanes said, is very painful afterward and can take a while to heal. There are also the risks of infection, and all the other risks surgical procedures carry. He said that if the tumor is very slow growing then he will go ahead with the placement of the g-tube in the belly. If by some remote chance there is no evidence of tumor, he will place the g-tube and do another surgery called the nissen fundoplication (sometimes called "the wrap" or "fundo") where the upper part of the stomach is wrapped around the lower part of the esophagus. This would add to the risk considerably but treat the reflux. And I hope that this will not be the option. The only way that he would do that procedure is if there is no tumor. I have said before that my biggest fear right now is that the tumor will not come back and Theo will be left to live his life this way. Dr. Hanes referred to his brain damage as the "neurological devastation", which it is. Nobody had said that before. Everyone else (medical people) either avoids prolonged talking about the brain damage or will say, "the injury" or "the insult". So anyway, he scheduled him for the surgery for December 9, just in case, but whether he actually has the surgery is subject to the results of the MRI.
In the meantime, I still don't know what can be done to help Theo with his breathing issues--and neither does anyone else--I asked that specific question twice and never got an answer. I know his breathing issues are completely caused by the irritation of the tube in his nasal passages and in his throat. This morning I had to remove the tube because it got clogged with these little time-released pellets of prevacid which we were prescribed to help relieve the reflux (we later got the right kind straight with the pharmacy). When I took the tube out, we realized that was our last tube so Jamie had to go to the place that supplies all Theo's feeding stuff to get more tubes--they couldn't deliver till later in the day and he needed food and medicine right away. So the tube was out for about an hour and he had no breathing problem whatsoever during that time. Once he calmed down from being upset about me pulling the thing out of his nose, he slept more peacefully and soundlessly than he has in three months. He was so upset when we had to put it back in and his little nose bled and he was sneezing blood-not a lot, but it upset me so much that I couldn't do it and we had to call our nurse and she came over to do it. She said the bleeding was very minimal and caused by the irritation of his nasal passages. That's the reason that he wasn't going to be able to keep the ng tube if he had stayed on chemo. The risk of infection is high because the nasal passages always get irritated from those things and chemo lowers the white blood cell count so much. So, I don't know what we can do to help him. I just wish he could eat and swallow like normal--but that's pointless to wish for. It just breaks my heart to see him suffer for one second.
So--once again, everything depends on what the MRI will show on the 30th. 12 more days until we know what is happening in Theo's head. We won't know the results until we meet with the doctors on the next day December 1.
Keep us in your prayers--