Monday, June 30, 2008
Little Daniel
Daniel has been really upset over the weekend. He is now back on methadone. Hopefully that will help him be more comfortable. He is off of the cooling blanket for now. Another urine test was sent off and it came back negative for a UTI. That is good but now we don't know why he is still running fevers. The antibiotic has been stopped. He still has not had the bronch but he will have that done soon. We are all hoping that the doctors can find out what is wrong. He still has the breathing tube but they lowered the settings. More to come later in the week...
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Laura & Jason,
It must be very difficult (to say the least) that not even Ohio doctors & all their high-tech tests can find out what is wrong with Daniel. Sometimes you wonder that if at least they know what is wrong, they can better fix it, but it really is a good sign that all these tests keep coming back negative. Maybe Daniel has a virus that needs to work its course and antibiotics will not help fight a virus...only time will. (Which really stinks when you are a parent trying to playing the waiting game and watching your child go through this. You feel so helpless. But Daniel I'm sure feels your presents, and that is a huge help!) But it does sound like Cincy has the pain management thing down pat! The methadone seems to be keeping him comfortable. Hopefully that will allow his body to rest and heal itself.
I'm relieved to hear through all of this Ohio still seems to have managed all of this without talking about or performing a tracheostomy. And even if they start talking about that out there, find some piece knowing Daniel will have THE BEST ENT TEAM in the NATION there working on him!
We will hope and pray they do not find anything major during the bronch, but if pulmonolgy is invited (which they should be), Ohio's Pulmonary Department's Director, Dr. Wood, is by far one of the best in his fields as well.
I'm going to send you a private e-mail about some of docs and some complicationg we ran into with bronchs. Hopefully if you know what to ask for, you and Daniel won't have to go through some of what we went through!
Thank you for taking the time to give us all these updates. We know it is hard to pull yourselves away from Daniel (and your other children, too) during this difficult time. We grately appreciate you keep us up-to-date. It helps us know what prayers to focus on, and know that we WILL be praying!
Love,
Maggie
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