Wednesday, February 9, 2011


Home again, this time from our trip to Boston.

Our journey to was adventurous...a quick, spontaneous trip through the Bronx, NY (not intended), free face painting at a fast food restaurant in Manchester, CT and our mini Super Bowl 'party' in Boston, MA. Our hotel room was on the 11th floor which was thrilling for these three children of mine. We found them giggling together and playing "iSmash", which they created themselves. Or so I'm told. Looking from the windows and "squashing" the people walking on the sidewalk with their finger against the window pane. It was, apparently, funny and entertaining.

Our appointment with Dr. F was at 9am on Monday morning. We arrived slightly later than 8:30am and waited. We were checked in, Wyatt was weighed and his height measured and we were taken to the squarely built exam room. The doctor was stuck in a procedure and it was quite some time (10:30am) until he made his way in to see us. By this point Wyatt's iPod battery was low and we were all getting antsy. The doctor came barreling in the door, moving and talking faster than I've ever witnessed before. I would guess he had several cups of intensely strong coffee! It made me chuckle in disbelief.

Dr. F was nice, pleasant. He talked and moved quickly, much like a hummingbird. And had a thick accent that made me have to think twice about what he was pronouncing at times. Our first, very brief, visit with him left Bryan and I looking at each other as if to say "Did you catch all that?" It was an experience unlike any other that we've had with a doctor. We were sent up to radiology for an x-ray, where we waited more. We then returned down to Dr. F's office and back into the exam room where he met with us again. He began to explain the procedure in more detail, we asked a few questions, expressed concerns and relayed some of Wyatt's history that Dr. F was unaware of. It was disappointing to realize that he didn't know much of Wyatt's medical history, which is rather complex. Some of the medications that he mentioned as possibilities to help we were previously warned of and told not to use because of the potential of impacting another affected area of Wyatt's body. As we raised those points to him, it was clear to us he needed to know the situation at hand much better than he did before any possible treatment could be spoke of. It all comes back to needing to look at the whole child and not just one system in this case. He then pulled in a nurse to the small room that we were occupying, and said we should probably talk to the anesthesia team today rather than the next morning. He quickly exited, leaving us with the nurse. She was slightly confused and asked us why she was to contact anesthesia, at which point I relayed his previous complications related to anesthesia and the list of recent medical concerns that have come about...the look on her face said it all, really.

The afternoon was a blur of confusion, quite frankly. We rushed from lunch, back to Dr. F's office, only to then hightail it to the other side of the sizable and complicated building to see an anesthesiologist who had no records or any medical paperwork informing him of Wyatt, other than his name relayed over the phone

As we went through the list of standard questions on the doctor's small piece of paper, categorized by body systems, it was quickly brought to his attention that this would not be an ordinary, nor routine, case. He initially tried to reassure us that the hospital had a qualified team of anesthesiologists and even several that feel comfortable with Mito kids, which I do not doubt. However, it was decided that they needed records to review, testing results and a firm understanding of our boy's history before they could put him under anesthesia safely...and we agreed completely.

After more waiting and more trekking across the confusingly large hospital, at which point we got lost and ended up in an area that I'm fairly certain we should not have been allowed to be in, we entered Dr. F's office for the last time that day. Leaving our contact numbers for him, just in case. We were done. DONE. We were leaving the hospital and walking back to our hotel room, 7 hours after arriving for our 9am appointment.

We decided to cancel the antro-duodenal manometry test. Unfortunately Dr. F wasn't able to, or didn't answer the questions that we needed answered. He was not aware of Wyatt's history and it showed clearly. It was a disappointing situation. We called to cancel the following days procedure and were able to talk with him directly. He assured us that he understood our concerns and made it clear that we can always reschedule should we feel it's best.

The day was draining emotionally. We settled in for the evening and decided to order the movie 'Tangled' from our hotel room TV. It was just what we needed. Time together, family time.

More to come...
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  1. SO, so sorry this did not go as hoped. Sending thoughts and prayers that the direction to go in from here becomes clear for you all!!

  2. Thank you so much for leaving that comment. I will let our doctor know tomorrow. How does Wyatt keep that bag from pulling on his tube? Do you rig it up some how?

    Yes its so crazy that their bodies are so out of wack. Maggies heart rate is almost always really low. Hardly ever above 60's. How often do you guys deal with low heart rates like that?

    I'm so sorry things didn't work out in Boston. Thats really frustrating. If I read that all correctly it sounds like that doctor really dropped the ball.

    Keeping you all in my prayers!