Oct 4, 2011

Help has arrived

The night Surgical resident just left. he's the same one for the past 3 nights so the only consistent doctor we've seen. His dr jacket actually says ENT on it and he's on a surgical rotation. So I tried to impress him with my ENT knowled...ge (like last week and I went to the ENT and they suggested tying off the Parotid glands and removal of the submandibular glands) and it piqued his interest. Also, tonight Manny's already increased in his salivary output just in the few hours he's been back on feeds ... enough so that this ENT noticed it too. I then threw in my story about Zoe having a parotid gland duct fistula (apparently that is soooooo rare, less than 100 in the world we're told). And every ENT so far has been very impressed with that... this one was no exception.

So after I buttered him up with my ENT knowledge, I told him that I was usually happy with the conservative approach but in this case, we've BTDT and this isn't going to get to the bottom line issue. I also asked him questions about his thoughts on the articles about foregut dysmotility in neurologically impaired children. (I knew he didn't know about those studies, but I also knew this would send him to the internet to look it up.) If he does look it up, he can be the "hero" tomorrow at rounds when he has this bright idea. I won't even out him if he does!

I tell you ... leave me in a room for too long and don't let me leave and I'll come up with all sorts of devious plans apparently!

5:30am, I hear this doc outside of our room talking to a group of people.  Then they leave.    I knew what that meant... we were no longer a surgical consult.  I had a feeling (and later it was confirmed) that they recommended our discharge. 

7:30am, 3rd year resident comes in (same one as yesterday).  I knew that he would be in charge of this case during rounds so I gave him all the good info to help him out. 

10:00am, that resident came and got me and asked me to join them for rounds in the hallway.  I walked out and there were like 20 doctors and nurses.  Some I've seen and some were new.  The resident presented the case and did a nice job.  I was silent.  The main attending was right beside me and she starts talking "out patient" following of Manny... ie. Discharge and trying a few simple things that we've already tried.  I bit my tongue.  (I already had Plan B: To stay nearby and bring him back when his stomach freaks out again.) 

Then this new man pipes up and says, "I'm GI".  And I said, "Hi GI".  He started addressing the attending that it's premature to send him home without a reliable feeding source.  YIPpEEE!!  Someone "gets it".  He says to the attending, "Let's assume Tampa tried all those things, right?" (looking at me) to which I replied "Ad nauseum". 

He asks me multiple questions and we start a dialogue between the two of us.  He can tell I know a thing or two, that I have tried many things that they were suggesting and that this is not straight forward.  Everyone else is just standing listening to the conversation. 

He decides to try him on a new med.  I ask about the effects of it on his c-diff.  He asks about his heart. I tell him we have a cardio consult for next week.  He orders an EKG and echo.  The attending suggests that he seems to be stable (to which I replied that holding feeds is a MIRACLE CURE).  He caught my tongue in cheek subtle passive aggressive reference.  He said that there was no need to recreate the horrible symptoms.  More questions.  

Eventually, he attending again asks how soon until we can be discharged ... and he says that he wants to observe him for at least 2 days with the new meds (inpatient).  Then if there's no effect, he will consult surgery Dr. Islam for a consult for a possible gastric stimulator (often called a gastric pacemaker).  And it wasn't until THIS POINT that the rest of the team started to catch on ... OH ... there *IS* something going on with this baby!

Eventually, he and his assistant and I go into our room where Manny is and he closes the door - leaving all the rest of the docs outside.  It was at this point that he started asking me about Merosin (and at this point, I'm the best expert he's got as he's never heard of it of course).  I offer what I have such as the contact info for some of the Muscular Dystrophy docs (including the one who wanted me to see THIS doctor), the standards of care article, the doctor from LA I've been emailing, etc.  And he takes it all.  (That's a first by the way!) 

I could see his brain spinning trying to come up with new ideas, versus trying the things we've already done that didn't work.  On the table (all new ideas) are to see what he CAN tolerate in terms of volume and then supplement the rest with TPN.  So like maybe feed him one day and then TPN the next or half and half one day.  Maybe he can handle 2 days before needing supplemental. etc.  I DO think it's a volume issue (as indicated by the fact that it takes a few days of build up before he starts the horrible retching). 

Before one hour was up, we had an EKG and an Echo done!  Can you imagine?

EKG ... he thought the "stickers" were way cool

Echo... not a fan of the goop on his tummy
About half an hour later, Dr. Lawrence, the GI's assistant came in to get a more detailed, thorough history.  She was awesome.  Friendly, caring, intelligent.  She actually READ the standards of care.  She told me they had already batted around a lot of ideas and that they were researching. 

So now I sit in my room, breathing a hugh sigh of relief.  I have HOPE again.  I have someone who thinks of this as a puzzle to solve and I have the feeling he is not used to failing.

His new Spongebob Pillow case as he plays with cars


  1. Beth, Dr. Islam is the creator of the pacemaker? I hear that he is FL now? I have a young friend who is very knowledgeable about the gastric pacemaker, she has had one for about 18 mos. She went through many trials and pain and has lasting implications because she wasn't treated correctly at the onset of her symptoms. I work with her, she is a very mature 19 year old. She has offered to be available if you have questions or just want to talk. She uses her illness to minister to others, you will love her! Let me know if you want her contact info.
    Tara in NPR

  2. YEA!!!! Someone who is listening. I think of you and Manny whenever I watch Mystery Diagnosis. Sometimes it is like peeling an onion. Lots of layers to go through until you get to the core issue.