The rollercoaster continues

Hi everyone -
Yesterday Rick's team ordered a radiology series with contrast. He had a CT with contrast a day or two ago and the contrast solution made it all the way through his system - but very slowly. This new study showed that his pyloris was not working at all and that it was shut. Small amounts of fluid trickled through - which explains why he was able to be ok with drinking 30 cc's of boost an hour, but when he moved up to 30 cc's every half hour, his stomach blew up and they had to reinsert the stomach drain.

Last night he had a procedure under general anesthesia where they put a camera into his stomach. They inserted a feeding tube and a balloon. (I have a hard time visualizing how this works.) They slowly ease the tube through the pyloris and slowly inflate the balloon. (The balloon is sausage shaped.) They leave it inflated for 15 minutes and then deflate it and pull it out. The feeding tube stays in the intestines (through the pyloris). They also inserted a scope into his right lung to have a look. Sugarbaker said the lung is healing extremely well.

Rick's sister Suzi and brother David sat with me through the long wait for the surgeons to come out. Sugarbaker said all was a success and he also called Tricia on his cell phone to explain what they did and the result. He said that there is a potential that the feeding tube might slide back into the stomach, but for now it was placed where they wanted it. Rick had a single tube feed this a.m. and a bit later, he felt the feeding tube curl in the back of his throat. DaSilva tried to undo the curl - and either the curl was caused by the tube slipping backwards through the pyloris or it slipped when he tried to untangle the curl in Rick's throat. The end result is that the feeding tube is in the stomach again and they can't use it for feeding.

Rick is keeping a good attitude and waiting for what comes next. They will probably need to pull the feeding tube out again and go through the insertion procedure again. It is a painful, nasty process and we are all discouraged to think he might have to go through that again. The unanswered question is whether the pyloris has stayed open. (There is no magical camera to look through without another procedure under anesthetic.)

Sugarbaker is out of town and DaSilva is making the calls. I asked to have the GI team involved too. We are waiting to see what happens next.

Just FYI, we have quite a team here. We have Dr. Sugarbaker's team of an associate, a fellow, and many residents. We also have a GI team who visit Rick almost daily and are consulted for most decisions (although the surgeons have the final say). Also, the thoracic floor has their own team of attending physicans who oversee Rick's care day-to-day, and they are very involved. The nutritional consult is because he hasn't eaten in so long, and the physical therapy consult is to make sure he is moving his body through a full range of motion and doing exercises that he can do in bed. He walks 4 or 5 times a day, but that isn't enough for Rick, who is normally very active. We haven't seen the PT yet, and the nutritional people are on hold again until they figure out what is happening with the pyloris. The nursing team has been highly skilled and generally excellent. It is frustrating because they assign nursing staff using some formula that defies understanding. We have only had 3 repeat nurses in all this time. Rick checked into the hospital on April 14 and it is April 29 today. You do the math.

We just had an awesome treat. Rick was walking around the loop with his sister and I was on the phone. I looked up to see Cindy Alva and her two daughters come through the door (transported magically from Safford, Arizona)! They are here for her daughter's senior trip and even though they only have 2 days in Boston, they took time to come to see us. They only had a few minutes to visit, but it was such great gift for us. Rick's mood lifted immediately and I am just so whelmed to think that they took the time to look for us at the apartment and then the hospital. We are so lucky to have such wonderful and supportive friends. It will carry us through. Thank you everyone.
Sue