10/19: If Only They Listened
Tuesday evening, after we brought Leo home and everyone had gone for the night, Leo had another grunting and struggling episode. He spit-up a little and started breathing very quickly again. I decided to do what I saw nurse Sandy do in the Intensive Care Unit -- to connect a gigantic 60mL syringe to Leo's NG tube and suck-out whatever was there. I sucked-out about 150mL of completely undigested formula that was just sitting in his stomach! At the 60mL per hour at which his feeding pump was working, that's 2 and a half hours of food! As soon as we saw little else coming-out, we noticed that Leo's breathing became normal and he stopped struggling.
We called our new palliative care nurse Marissa at about 11pm, who said she would call Dr. Battle, who called us at midnight. She suggested getting PediaLite for the night and then reevaluating in the morning. That didn't help and we just disconnected everything and Leo actually slept a few hours (as did we).
When Leo was born, he had a problem with regular formulas: they constipated him terribly. We tried everything and eventually found a formula called Alimentum, which is basically pre-digested. Once we started feeding this to him a month or so after he was born, all became well. He stayed on this formula for the first year or so and never had any GI issues. Afterwards, he was on regular food, milk (which he could drink by the gallon it seemed), etc., but for some reason just couldn't tolerate regular formula. This is what I told those GI doctors on Tuesday, October 3 and what Marina told Dr. Battle Wednesday morning. Dr. Battle, unlike Drs. Hernandez, Berman, Garcia, or Guna, listened. She immediately wrote an order for predigested formula for 3 year-olds (not Alimentum, but something similar).
While Marina was talking to Dr. Battle, I was at work and tried calling one of these GI "specialists." I spoke to someone who took a message. After an hour or so I got a voicemail from a nurse Sharon in some GI department (not necessary Luterhan General, possibly Loyola for some reason). The message was being relayed on behalf of Dr. Berman telling me that if Leo had any problems, to take him to the emergency room! What incredible medical advice! This fueled my anger and I called the Director of Operations of the Women's and Children's Hospital at Lutheran General, Marilyn Isles. She didn't know how she could help and didn't offer any advice other than to listen to the doctors (ha ha), but was nice and listened to me. I then left a voicemail for the Director of Clinical Excellence at Lutheran General, telling her how angry I was (and still am) at the "treatment" and "care" Leo had gotten in the hospital. She has a nice sounding title, but hasn't even had the decency to return my call.
Anyway, the predigested formula arrived Wednesday evening and worked like a charm! No gas, no cramps, no bloating, no struggling, no pain! He even pooped three times at night, which Marina and I were more than happy to clean-up. If those doctors had just listened to us in the first place, maybe Leo wouldn't have had to have spent an additional 2 weeks in that foresaken hospital in pain, being poked, prodded, and pumped full of all sorts of drugs to undo the negligent damage that had been done! This formula, though, is only one component of a terribly complex situation.
Yes, I am extremely angry and upset -- who wouldn't be!? They made him suffer and delayed his treatment. Unfortunately there's nothing we can do about it now, other never going to Lutheran General for help again. The only thing we can and will do is continue to help Leo get out of this state and get some strength back to restart treatment.
We called our new palliative care nurse Marissa at about 11pm, who said she would call Dr. Battle, who called us at midnight. She suggested getting PediaLite for the night and then reevaluating in the morning. That didn't help and we just disconnected everything and Leo actually slept a few hours (as did we).
When Leo was born, he had a problem with regular formulas: they constipated him terribly. We tried everything and eventually found a formula called Alimentum, which is basically pre-digested. Once we started feeding this to him a month or so after he was born, all became well. He stayed on this formula for the first year or so and never had any GI issues. Afterwards, he was on regular food, milk (which he could drink by the gallon it seemed), etc., but for some reason just couldn't tolerate regular formula. This is what I told those GI doctors on Tuesday, October 3 and what Marina told Dr. Battle Wednesday morning. Dr. Battle, unlike Drs. Hernandez, Berman, Garcia, or Guna, listened. She immediately wrote an order for predigested formula for 3 year-olds (not Alimentum, but something similar).
While Marina was talking to Dr. Battle, I was at work and tried calling one of these GI "specialists." I spoke to someone who took a message. After an hour or so I got a voicemail from a nurse Sharon in some GI department (not necessary Luterhan General, possibly Loyola for some reason). The message was being relayed on behalf of Dr. Berman telling me that if Leo had any problems, to take him to the emergency room! What incredible medical advice! This fueled my anger and I called the Director of Operations of the Women's and Children's Hospital at Lutheran General, Marilyn Isles. She didn't know how she could help and didn't offer any advice other than to listen to the doctors (ha ha), but was nice and listened to me. I then left a voicemail for the Director of Clinical Excellence at Lutheran General, telling her how angry I was (and still am) at the "treatment" and "care" Leo had gotten in the hospital. She has a nice sounding title, but hasn't even had the decency to return my call.
Anyway, the predigested formula arrived Wednesday evening and worked like a charm! No gas, no cramps, no bloating, no struggling, no pain! He even pooped three times at night, which Marina and I were more than happy to clean-up. If those doctors had just listened to us in the first place, maybe Leo wouldn't have had to have spent an additional 2 weeks in that foresaken hospital in pain, being poked, prodded, and pumped full of all sorts of drugs to undo the negligent damage that had been done! This formula, though, is only one component of a terribly complex situation.
Yes, I am extremely angry and upset -- who wouldn't be!? They made him suffer and delayed his treatment. Unfortunately there's nothing we can do about it now, other never going to Lutheran General for help again. The only thing we can and will do is continue to help Leo get out of this state and get some strength back to restart treatment.
posted by Yury at 8:34 PM
1 Comments:
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