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Thread: To ER Tomorrow

  1. #11
    Distinguished Community Member
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    May 2008


    Rose, First thing I have to say is that dinner sounds scrumptious! (one of Kathleen's favorite words). I'm so glad to hear that everything is getting back to normal... Praying that the lab results will not change the course Jon is on to recovery. I hope you can take even more time to keep yourself healthy, mind and body. Walking is great! It's been pretty hot here too so I haven't been walking like I should. Thank you for all the updates.
    Mary Grace

  2. #12


    Happy to hear that Jon is getting better! Continued prayers going up for all of you.


  3. #13
    Distinguished Community Member andromeda31's Avatar
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    Oct 2006



    Glad to hear things have turned around for Jon! How was the culture result? Hope they didn't have to change up the meds. Glad to hear they have asked the PT to come back and I pray that it gets approved!

    Sending prayers that he keeps improving!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7) babies are all getting so old!!

  4. #14
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Oct 2006
    Blog Entries

    Thumbs up Still Home and Improving!

    ((((((HUGS TO ALL)))))) ~

    As always, thank you so much for your love, prayers and support. Here’s today’s update ~

    I called the hospital about the culture results, and I spoke to a very nice gal, who was quite thorough. The culture showed Staph Co-Ag Negative, which is a blood infection. She said that it was quite possible that the sample was contaminated, because his other blood culture didn’t show this bacteria.

    She asked if Jon was:

    Feverish ~ No. Normal temp all night, and yesterday.
    Having chills ~ No. He’s sweating. But not chilled.
    Lethargic ~ No. He’s sleeping a lot, but he has lots of moments of being awake and alert. I’m pretty sure I’d be sleeping too, if I had pneumonia and a UTI.

    She said that the Zithromax should treat this infection, but if he has any of these or other symptoms, he’ll need to return to the ER for admission and IV antibiotic. Okay. Return to ER? How about if we have our Infectious Disease doc prescribe the IV antibiotic, and we administer at home, with support/guidance from Jon's home health nurse? I didn’t say that to her, but that’s the route we would take, if possible. I don’t want to go back to that zoo.

    She offered to call Dr. A’s office with the results, and suggested that I do the same, so I did. I spoke to Dr. A’s nurse, and she noted all of the information I gave to her, including that Jon seems to be improving, to discuss with Dr. A. She is a really nice gal, and she follows through.

    The possibility existed that Jon would need another blood draw to confirm that this sample was contaminated. I just took off his bandaids today. He looks like a human pin cushion! NO! I didn’t want him to have to go through more poking! Plus, I don’t know his nurse's schedule. She might not be working today or tomorrow, and I don’t want anyone else to try to draw his blood, because he is a challenge. Even for the Queen of Blood Draws.

    Dr. A's nurse called a little after 1 p.m. and said that Dr. A agreed the sample was likely contaminated, after looking at the rest of Jon’s lab results. He also said the Zithro would treat it, if he did have it, and that as long as he was clinically improving, he didn’t want another blood draw. What a relief!

    So, of course, after having a normal temp all night/morning, I took Jon’s temp at 1:30, and it was 99.5! It stayed there basically all afternoon. I stripped him down, bathed him, and we opened his window. It’s finally back to normal this evening. His room is hot with that concentrator going, and all of his other electrical equipment. He has his Dyson fan on. We had a beautiful day, with lovely sea breezes wafting through our home.

    This evening, Jim and Jon watched football, and they practiced handshakes and fist bumps. Jim said that Jon was into it and trying to do each one. He also “throws long” with Jim. Arm exercises, when he isn’t tied down.

    Which he is, since he will not leave his cannula alone. I’m standing right in front of him, with his hands tied down, and he leans over and tries to meet his hand to his nose. And when I stop him and straighten him up, begging him to stop doing this, he gives me a huge Cheshire grin that screams, “I’m playin’ you! Ha!”

    Without the O2, his SATS are 85-86, so he is absolutely not ready to be off of O2. He has figured out how to move his head, when his hands are tied down to get the cannula off. He is a rascal! And he is wearing me out!!

    Hardly what I would classify as “lethargic!”

    Jon is now watching a Paul McCartney concert DVD and seems content. Temp is normal. SATS/Heart rate are good. His torso has expanded again with fluid/possibly gas and poo. So he’s going to need MOM.

    We’re keeping it real. We’re determined, and we’re doing everything possible to keep Jon at home and bring him back to complete health.

    Thank you all again, so much, for your prayers and love, which means everything to us and is helping us in a multitude of ways.

    We Love You! And our prayers are with and for you and for the ones you love ~

    Abundant blessings upon you all ~

    Love & Light,
    Last edited by Earth Mother 2 Angels; 08-20-2015 at 08:41 PM.
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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