Customer Reviews

Thursday, April 28, 2011

December 2007: The Talk

it's been a few weeks now, and Charlie just isn't getting better.  jay and i are so frustrated by the lack of information that we've been getting.  none of the doctors know what is going on.  nobody can tell us if he is going to live, die, be severely disabled, be healthy...nothing.  the only thing they can tell us is what his last blood gas was...or what his sodium level was.

we've seen so many different doctors now.  the cardiologist has been in several times.  Charlie still has the small hole in his heart (the PDA has not closed), and he also has pulmonary hypertension.  a kidney specialist has been in...Charlie has a horseshoe shaped kidney, and we have no idea what this means for the future.  a neurologist has been in...Charlie's brain doesn't have the level of activity that one would expect for a baby his age.  a GI specialist has been in...Charlie's liver is starting to malfunction.  on one of his blood gases, the prick to the heel wouldn't stop bleeding, so they checked his clotting factors and they were not normal.  he is also starting to accumulate fluid in his abdomen and he is starting to become jaundiced again.  pulmonology has been in...they don't know why Charlie can't breathe.  his lung x-rays still look cloudy, and they should have cleared up by now.  every single major organ and system seems to be slowly deteriorating.  and no one can tell us why, or what will happen.  no one has been able to say, "oh, he has xyz syndrome.  here's what we do about it". 

so after expressing our frustrations to the doctors we had a big meeting with i don't even know how many doctors, big C and the geneticist.  we went over everything.  all of Charlie's problems, what they can do something about, and what they are still walking in the dark on.  by the end of the meeting, it was decided that we would go ahead and get the hole in his heart closed.  the way they described it was "routine major open heart surgery".  great, well that gives me a lot of comfort and faith.  i guess it isn't abnormal at all to have the PDA still open, especially in premies, but then again, none of the doctors have seen a case like Charlie before.  still though, Charlie's surgery is scheduled for friday.

friday surgery.  that morning, the cardiac surgeon did a full evaluation of Charlie.  i guess that they have to do this before every surgery, which i think is crucial.  he said that the surgery would just be too risky for Charlie, and that he probably wouldn't survive the surgery.  when they do the surgery they have to do something with the lungs so that the patient can only breathe with one lung, and since Charlie's lungs are so weak as it is, to try to ask him to make it only with one functional lung is just too risky.  plus, he didn't think that closing the PDA would even help much, and given the fact that he has such pulmonary hypertension, it could even hurt. is off.  i was relieved, but also upset.  relieved because i was terrified of him having open heart surgery, but upset because i felt like finally some action was being taken to get him better, and then the plans just fly out the window. 

after all that, i went back to RMH and stayed up until all hours of the night/morning and researched everything i could.  i looked up every symptom Charlie had.  i researched every doctor at boston children's hospital and emailed probably 25 different specialists begging them for help.  i emailed liver specialists, neurologists, pulmonary doctors, kidney doctors, everyone i could think of and i told them Charlie's whole story, all his problems and i told them i was desperate for help.  i heard back from several of them, but nothing really all that useful that i could sink my teeth into.  all said that they'd be willing to consult with Charlie's doctors, but it seems like they want to hear from an actual doctor, not a lunatic mother.  i've never felt so helpless and worthless in my life. 

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