kayleesgrandma
New member
Mary cannot get into her blog so I am posting what she wrote me today about Isaiah. What I need to know is what do you all think...
In her blogs she says Isaiah is not eating, he hasn't had a true meal, just bites (4 at most) of one thing. He did take ensure a couple of times, but basically has not eaten anything substancial for at lest 4-5 days. I am worried. Read what she wrote me:
<i>I guess isaiah is not little any more but he will always be my little boy no matter how old he gets......I called the doctor and the nurse called me back he grew a little more staph then he did the last time and now they are calling him in some augmentin and 2 days of orapred....They will see him on wednessday at 10:30 am .i told her about him not eatting enough for the last 5 days and she just said lets get him through until wednessday.I said ok and i told her ,you know he usually has a moon face like most cf kids but now you can see his jaw line and thats got me worried because that means weightloss.She said well his cultures are clean except the staph .I said i know thats what is so puzzling.So she said his post nasal drip is probably getting into his lungs and is probably starting a infection so we are going to put him on augmentin and that takes care of that and the staph too...she said 2 for 1 deal there... I said thats a good thing at least.i told her he has only ate small mini marshmellows and it is worring me but she said he should be ok until wednessday.She said she did not want him in clinic today because this is the day when all the more advanced in progression cfers come in who have all the bad germs and that isaiah is clean so she did not want him exposed to it..I was thankful for that info at least....So this is more a push through then a solution...I do have our bags packed for wednessday because i have this feeling we are not coming back home......I am hopeing that the prapred makes him eat eat alot...it usually does and it will stop that cough as well she told me because it will open him wide up ..she and i laughed about that.......So we are still in the same boat just with meds to pull this child through until wednessday...So they are baffled as well as me to as what is ailing him right now....She did explain it is like a domino effect scenerio, tip one and then 3 more fall and then 5 more and then they eventually go out of control and sorta liek what is happening to my son so that was a good comparision..... </i>
My question is (not to think that I know more than doctor--BUT), IF THIS WAS YOUR CHILD--WOULD YOU WAIT TWO MORE DAYS? I don't think doctor understands that Isiah basically hasn't eated for almost 5 days, and that will be 2-3 more. I am really worried that he will get too weak--and I know that their little hearts can't take his body not getting nourishment...
<b>AM I OVER-REACTING? PLEASE, I WANT OTHER OPINIONS....</b>
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<u>TUESDAY</u>
I called Mary yesterday after waiting for a few posts to confirm what I felt. She said the ped doctor worked with the cf doctor, and she didn't understand why the doctors were worried on Friday and not on Monday and just prescribed MORE antibiotics and weren't worried--and wanted her to wait 2 more days! She said Isaiah has been taking fluids, but no food. Then Isiah started throwing up and she got off phone.
She called me back--she was so confused about her clinic...so after she talked with hubby--he said call CHOP Hospital in PA. She called the CF clinic there and told them that Isaiah had lost 5 pounds and they said to bring him right in! It was a half hour away. They had to fix their car, but she was packing for a hospital stay. She said she is not going back to her old clinic ever.
I have been anxiously awaiting her call, but haven't heard anything...just wanted you all to know the update...
In her blogs she says Isaiah is not eating, he hasn't had a true meal, just bites (4 at most) of one thing. He did take ensure a couple of times, but basically has not eaten anything substancial for at lest 4-5 days. I am worried. Read what she wrote me:
<i>I guess isaiah is not little any more but he will always be my little boy no matter how old he gets......I called the doctor and the nurse called me back he grew a little more staph then he did the last time and now they are calling him in some augmentin and 2 days of orapred....They will see him on wednessday at 10:30 am .i told her about him not eatting enough for the last 5 days and she just said lets get him through until wednessday.I said ok and i told her ,you know he usually has a moon face like most cf kids but now you can see his jaw line and thats got me worried because that means weightloss.She said well his cultures are clean except the staph .I said i know thats what is so puzzling.So she said his post nasal drip is probably getting into his lungs and is probably starting a infection so we are going to put him on augmentin and that takes care of that and the staph too...she said 2 for 1 deal there... I said thats a good thing at least.i told her he has only ate small mini marshmellows and it is worring me but she said he should be ok until wednessday.She said she did not want him in clinic today because this is the day when all the more advanced in progression cfers come in who have all the bad germs and that isaiah is clean so she did not want him exposed to it..I was thankful for that info at least....So this is more a push through then a solution...I do have our bags packed for wednessday because i have this feeling we are not coming back home......I am hopeing that the prapred makes him eat eat alot...it usually does and it will stop that cough as well she told me because it will open him wide up ..she and i laughed about that.......So we are still in the same boat just with meds to pull this child through until wednessday...So they are baffled as well as me to as what is ailing him right now....She did explain it is like a domino effect scenerio, tip one and then 3 more fall and then 5 more and then they eventually go out of control and sorta liek what is happening to my son so that was a good comparision..... </i>
My question is (not to think that I know more than doctor--BUT), IF THIS WAS YOUR CHILD--WOULD YOU WAIT TWO MORE DAYS? I don't think doctor understands that Isiah basically hasn't eated for almost 5 days, and that will be 2-3 more. I am really worried that he will get too weak--and I know that their little hearts can't take his body not getting nourishment...
<b>AM I OVER-REACTING? PLEASE, I WANT OTHER OPINIONS....</b>
----------------------------------------------------------------------------------------------
<u>TUESDAY</u>
I called Mary yesterday after waiting for a few posts to confirm what I felt. She said the ped doctor worked with the cf doctor, and she didn't understand why the doctors were worried on Friday and not on Monday and just prescribed MORE antibiotics and weren't worried--and wanted her to wait 2 more days! She said Isaiah has been taking fluids, but no food. Then Isiah started throwing up and she got off phone.
She called me back--she was so confused about her clinic...so after she talked with hubby--he said call CHOP Hospital in PA. She called the CF clinic there and told them that Isaiah had lost 5 pounds and they said to bring him right in! It was a half hour away. They had to fix their car, but she was packing for a hospital stay. She said she is not going back to her old clinic ever.
I have been anxiously awaiting her call, but haven't heard anything...just wanted you all to know the update...