Death of an Angel
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May 23, W - Took the day off from work.  We picked up Jo's mom, and we all went to see Jennifer at 3:00 PM.  Jennifer had been moved back to room '1' without our knowing of the move beforehand; thus, it was quite a shock to us to see her there.  Jennifer looked real bad, and her heart monitor scope was running erratic patterns.  Jo got upset, and started to cry.  I took her to one of the waiting rooms to calm down.  Ms Sabo, Jennifer's nurse for the day, came in to the room along with Upper gastrointestinal Endoscopy. Upper gastrointestinal Endoscopy. Dr. King.  I was quite concerned, and asked Dr. King if the Gastrointestinal specialist had looked at Jennifer real closely.  At that question Dr. King 'blew-up', and said "who do you think did the I Endoscopy?" in a loud voice.  I could not believe her attitude and manner.  After all it was our child out there and not hers.  I said something to the effect that I needed to talk to someone else.  At that point Dr. King walked out of the room saying that she had something else to do.  I asked Ms. Sabo if I had done anything to have elicited such a response from Dr. King, Ms. Sabo could not understand Dr. King's attitude either.

We never did find out why Jennifer was transferred back to room '1'.   Later we talked with Mrs. Ferrari, and Jo's mom was included in the conversation since she was with us.   A while later, Dr. King came back in with Dr. Cromer, but Dr. Cromer could not stay.  We discussed Jennifer's case - the net result was that Dr. King says that they do not know what Jennifer's problems are, and that they are doing everything that they can, however, she would not elaborate as to just what everything meant.  Dr. King feels that she needs not give us sufficient information for us to make medical evaluations - she feels that our questions should not be asked by a parent, and that if 30 parents asked that much information, they would not have time to do their jobs; however 30 parents are not asking the type of questions that we are, and we can not understand that if they admit that they do not know what the problem is, why can they not listen to the observations that we have made of Jennifer's condition.  After all they are looking at 30 babies, while we are only observing just one - Jennifer.

They keep saying that they have run all possible tests, but they refuse to say just what those tests are.  When I asked about the various 'accidents' that Jennifer has had, Dr. King said that those are things that just happen, and that is a chance that anyone takes while in the hospital - I just can't buy that.

Its quite confusing, Mrs. Ferrari keeps telling us that we have a right to know everything about Jennifer, but Dr. King keeps saying that we are being overly concerned.  Jo and I expressed our concern to Dr. King that Jennifer seems to have a serious set back every time that her temp falls below normal - Dr. King says that is just a coincidence, and has nothing to do with Jennifer's problems.  Dr. Cromer in the past has said that Jennifer must be challenged no mater what.  Dr. King said today that Jennifer must be fed as soon as possible, but my concern was that Jennifer should be allowed to stabilize first, and then be attempted to be fed again.

Dr. King is totally ignoring the fact that whenever Jennifer is out of the isolette for any period of time, her temperature falls, and if allowed to stay out of the isolette past that point, she develops serious problems.  Dr. King feels that our observations on that point are not valid - Dr. King says that the temp problem is due to some sort of brain disorder.  At this point Dr. King became upset, and left the room saying that she had 30 other babies to take care of, and could not talk to us any longer - I don't think she spent over a half hour with us, and it was only the second time since Jennifer came here over a month ago that Dr. King had spent any significant time with us.

When Dr. King left the room, I was beginning to feel that perhaps we were being overly concerned, because Mrs. Ferrari was agreeing with what Dr. King had been saying; however, at that point Dr. Rubin and Mr. Strom from 4B came by for our meeting that Mrs. Ferrari had set up for us earlier. Sphincter Muscle at top of Stomach.  Dr. Rubin agreed with many of my concerns that Dr. King had said were only imaginary.  Dr. Rubin said that he would talk to Dr. King, and that he would personally take a closer interest in Jennifer's case, since she would eventually be put under his care again in section 4B.  This reassurance from Dr. Rubin gave us new hope.  Dr. Rubin feels that the isolette can be modified in such a manner that Jennifer can remain in it and also be able to be fed.  Dr. Rubin feels that Jennifer must sit up in order to eat, because he feels that her Sphincter Muscle is still too weak to allow her to keep her food down.  We left Metro at about 6:00 PM.
 



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                © O.A. Banhidy 2006