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    The WOCN VISIT

    ((((((Hugs to All)))))) ~

    At long last, the WOCN visited today. And what a surprise!

    In 2005-6 and 2009-10, his hair was short and black. Today, his hair is down to his shoulders, brown with...
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    Progress

    ((((((Donna)))))) ~

    Thank you for your hugs and prayers.

    Jon had a bad night, with copious mucous and needed suctioning. Finally he slept for 5 hours and woke up with no cough.

    When...
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    ((((((Hugs to All)))))) ~ After copious...

    ((((((Hugs to All)))))) ~

    After copious amounts of mucous spewing forth last night, Jon was able to settle down and sleep.

    He woke up with a slight cough and little production, and his SATS...
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    Test Results and Decisions

    ((((((Hugs to All)))))) ~

    Jon is not doing well. Still on O2, still coughing out a lot of pale watery mucous.

    Our Primary Care doctor finally emailed me about Jon's blood work and sputum...
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    ((((((Hugs to All)))))) ~ funnylegs4 ~ Our...

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Our Mac is 6 years old, so I have no idea what the new Macs look like. I followed the instructions enclosed with the remote, and I still couldn't get the...
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    Back On O2

    ((((((Hugs to All)))))) ~

    Last night, Jon's SATS dropped to the 80s, so I removed his trache plug, and he coughed out a goodly amount. SATS rose to the 90s. This continued on through the night,...
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    ((((((Hugs to All)))))) ~ Mary Grace ~ ...

    ((((((Hugs to All)))))) ~

    Mary Grace ~

    Thank you so much for your kind words and loving support. It is an honor to share our experiences with the hope that we help others. I strongly believe...
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    A Corner Turned

    ((((((Hugs to All)))))) ~

    After 7 days on O2, coughing out gobs of goo, SATS dropping and increasing, watery bowel, catheter leaking, fever, lethargy and being completely out of it, Jon suddenly...
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    Nurse Visit/Labs/Dilantin Deja Vu

    ((((((Hugs to All)))))) ~

    MOM is working somewhat, as Jon did produce some chunks last night. Still a lot of water in the bowels though.

    Jon's nurse visited today to draw blood. I asked her...
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    Still On O2, Constipated, and ... Nurses ...

    ((((((Hugs to All))))))~

    Yesterday, Jon began coughing on his own, so we stopped suctioning. Gobs of goober from his open trache kept me busy with clean up and changing gauze pads. A much better...
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    Some Progress

    ((((((Hugs to All)))))) ~

    Jon has had a funky day, with SATS all over the place. He went from 92 to 75 in an hour this afternoon. About every 4 hours, he's needed suctioning. We tried weaning...
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    Angel Michael Is Watching Over Us

    ((((((Hugs to All)))))) ~

    Just before 8 this morning, Jim came upstairs to our bedroom to tell me that heíd suctioned Jon and increased his O2 to 3 liters, but he was unable to get Jonís SATS...
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    How Is Nick?

    ((((((Donna)))))) ~

    How is Nick today? Has his nausea resolved? Is he receiving any meds for nausea? What is happening with the scar tissue obstruction? Is he having bowel movements?

    Iím so...
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    The Long Reply

    ((((((Hugs to All)))))) ~

    Thank you callyflower, funnylegs4, Virginia, and ANN ~

    JONíS UPDATE

    Jon has slept a total of 9 1/2 hours since Monday. Iíve been staying up with him, retiring to...
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    ((((((callyflower)))))) ~ Thank you for your...

    ((((((callyflower)))))) ~

    Thank you for your suggestion.

    If Jim has home health, Jon's nurse will be Jim's nurse. She is already providing us with guidance and advice informally. She...
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    ((((((Donna))))))~ I didn't see your post...

    ((((((Donna))))))~

    I didn't see your post before I posted.

    Jim, Jon and I are praying that Nick doesn't need surgery. We surround him with healing, positive energy and send all of our love...
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    A long day

    ((((((Hugs to All)))))) ~

    Donna ~

    Many prayers for your safe return and that Nick is feeling much better. I'll be anxiously awaiting your update.

    Mary Grace ~

    I enjoyed "Crazy Rich...
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    ((((((Donna, Jim & Nick)))))) ~ Oh dear! I'm...

    ((((((Donna, Jim & Nick)))))) ~

    Oh dear! I'm so thankful that Nick isn't in pain. May it continue to be so. What can be done about the scar tissue obstruction? Is he having bowel movements? ...
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    ((((((Mary Grace)))))) ~ Well, the Academy...

    ((((((Mary Grace)))))) ~

    Well, the Academy Award for best actor went to Rami Malek last night. Bless his heart, his bow tie was crooked, and lots of people, including Lady Gaga, tried to...
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    ((((((Donna)))))) ~ Thank you for sharing this...

    ((((((Donna)))))) ~

    Thank you for sharing this information about gentian violet. I found this in my research, which leads me to think it's not safe for Jon, because he will swallow it. He can't...
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    ((((((Hugs to All)))))) ~ Mary Grace ~ ...

    ((((((Hugs to All)))))) ~

    Mary Grace ~

    Thank you so much for your prayers. You're right, I would know if Jim was suffering from overdoing anything. He doesn't want me to know if something is...
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    Trache, Turning, and Wounds

    ((((((Hugs to All)))))) ~


    Jonís nurse changed Jonís trache today, as I assisted. It went well, and it was clear that Jon needed a new trache. Iím glad we were able to get that accomplished...
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    ((((((Hugs to All)))))) ~ Jon fell asleep at...

    ((((((Hugs to All)))))) ~

    Jon fell asleep at midnight. At 3 a.m., his SATS were jumping all around from 92 down to 73. He was rattling, and since he couldn't hold a constant SAT, I had to...
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    Wounds, Seizures, and Leakage

    ((((((Hugs to All))))))) ~

    ANN ~

    Thank you so much for your thoughts, prayers, and blessings for us. Knowing that we we have the support of so many wonderful people sustains us and gives us...
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    Another Seizure

    ((((((Hugs to All)))))) `

    At 2:30 this morning, Jon had a 10 minute seizure. He was restless afterwards, and he had difficulty falling asleep. He finally seemed to be asleep at 5 a.m., which is...
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    Delivery Day

    ((((((Hugs to All)))))) ~

    Jon's O2 concentrator was delivered today. It is smaller, more compact, blue instead of tan, and was put into service in 2017. The one he has is 10 years old.

    The...
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    ((((((Hugs to All)))))) ~ Last night, Jon was...

    ((((((Hugs to All)))))) ~

    Last night, Jon was restless and didnít sleep well. Today was The Turning, so we hoped that he would stay awake until late afternoon.

    Via texts, I coordinated John...
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    ((((((Hugs to All)))))) ~ Thank you, Marcie,...

    ((((((Hugs to All)))))) ~

    Thank you, Marcie, so much for checking on us.

    John visited and we turned Jon this afternoon. It only took us 20 minutes today. We realize now how time consuming the...
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    ((((((callyflower)))))) ~ Thank you for your...

    ((((((callyflower)))))) ~

    Thank you for your hugs and advice.

    Jon does have a breathable underpad beneath him, and we slide a folded absorbent underpad beneath his man bits. We have to turn...
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    Changes: Turning and Seizure Meds

    ((((((Hugs to All)))))) ~

    John visited at 2:00 yesterday afternoon to turn Jon. He donned his mask and gown at the door, chatted with us for a couple of minutes, and then we got right to The...
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    Toenails, Turning, Wounds, O2, Sleep ... SLEEP!

    ((((((Hugs to All)))))) ~

    Jon had a pretty rugged day today.

    TOENAILS AND TURNING

    Our wonderful toenail gal managed to remove two bits of ingrown nail from Jonís big toe. He only has a...
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    ((((((Hugs to All)))))) ~ Thank you, ANN,...

    ((((((Hugs to All)))))) ~

    Thank you, ANN, Virginia, Donna & Mary Grace ~

    Donna ~ SkinPrep is used for areas with tape or adhesive. We use it around Jon's colostomy stoma, before we put the...
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    View Post

    ((((((Hugs to All)))))) ~

    Jonís nurse changed the time for her patient after Jon, so that she could help us turn Jon and check his wounds. We did the blood draw first, and Jon gave us an...
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    ((((((callyflower)))))) ~ Thank you. I just...

    ((((((callyflower)))))) ~

    Thank you. I just texted Jon's nurse and told her that I want a wound care nurse and asked her to schedule one. I said that his wounds are serious, draining terribly,...
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    ((((((Hugs to All)))))) ~ ANN ~ Thank you. ...

    ((((((Hugs to All)))))) ~

    ANN ~

    Thank you. Not a lot of sleep happening here.

    Jon fell asleep at midnight, woke up coughing at 3 a.m. and has been awake since then, trying to nap, but...
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    (((((((Hugs to All)))))) ~ funnylegs4 ~ I'm...

    (((((((Hugs to All)))))) ~

    funnylegs4 ~

    I'm sorry that you have so much stress in your life. I hope that things get calmer for you. Thank you for your prayers.

    JON'S UPDATE

    Jon slept...
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    But Wait! There's More!

    ((((((Hugs to All))))))) ~

    Jon's blood work results were posted on his health portal. His WBC is normal, but his RBC, hemoglobin, and hematocrit are low, as are his Thyroid, and blood urea etc....
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    Nearing Tilt

    5125


    ((((((Hugs to All)))))) ~

    What a day!

    UTI ISSUES

    Our doctor emailed this morning that cephalosporins are the only class of meds sensitive to pseudomonas. The ďother options are...
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    ((((((Hugs to All)))))) ~ Thank you Ann, Mary...

    ((((((Hugs to All)))))) ~

    Thank you Ann, Mary Grace, and Donna ~

    Your love and prayers are appreciated so much!

    I do try to do breathing and imagery exercises to help me relax and reduce...
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    Orders, Cancellations, Confusion, Etc.

    ((((((Hugs to All)))))) ~

    After getting up early, bathing Jon, organizing everything we needed for a blood draw and turn/wound care to be ready for the nurse visit at 11:00 a.m., Jon's nurse...
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    ((((((Donna)))))) ~ What a great photo of you...

    ((((((Donna)))))) ~

    What a great photo of you and Jim! I love your dress! You look gorgeous! And Jim is dashingly handsome in his tux! So glad you had a fun night out, and for such a wonderful...
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    ((((((Callyflower)))))) ~ I just texted Jon's...

    ((((((Callyflower)))))) ~

    I just texted Jon's nurse to let her know that we'd like to turn Jon, while she's here, so she can see his wounds. It all depends upon her schedule. She has another...
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    ((((((Hugs to All)))))) ~ Jon spiked a temp of...

    ((((((Hugs to All)))))) ~

    Jon spiked a temp of 102 last night. We gave him Tylenol and cooling baths. It finally started coming down about 2:30 a.m., when Jim sent me to bed. By 8:00 a.m., it...
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    ((((((Hugs to All)))))) ~ callyflower ~ ...

    ((((((Hugs to All)))))) ~

    callyflower ~

    Congratulations on naming Cornelius!

    Daisy had her first run of the house today. She rambled all over the place, and she missed the middle of the rug...
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    Jon's Update

    ((((((Hugs to All)))))) ~

    Oops! I forgot to update about Jon!

    His SATS are holding at 94-95. His heart rate is in the low 80s. His urine output is 40 cc/hr (an increase thankfully). He is...
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    ((((((Hugs to All)))))) ~ callyflower ~ ...

    ((((((Hugs to All)))))) ~

    callyflower ~

    Daisy it is! I found this to explain the origin of "fresh as a daisy":

    https://www.ftd.com/blog/share/daisy-meaning-and-symbolism

    I also thought...
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    More Questions Than Answers

    ((((((Hugs to All)))))) ~

    Mary Grace ~

    Iím so glad that you had a wonderful Christmas. You have such a lovely family, it could be no other way! Iím looking forward to your update!

    Iíve...
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    ((((((Hugs to All)))))) ~ funnylegs4 ~ Our...

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Our stores stopped selling Tofurky gravy a few years ago. Itís even difficult to find a Tofurky. And the Tofurky ham we had for Thanksgiving was nowhere...
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    Wednescanday

    ((((((Hugs to All)))))) ~

    DINNER

    Christmas dinner was delicious and worth the effort! We were surprised by the Field Roast gravy packet of powder. It turned into a yummy ****ake mushroom...
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    Christmas Blessings To All

    ((((((Hugs to All)))))) ~

    Field Roast is in the oven. Potatoes are on the stove. Carrots are in the steamer. Cookies are baked. Table is set. Christmas dinner approacheth.

    Jonathan has had...
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    It's A Roomba!!

    5112


    ((((((Hugs to All)))))) ~

    Jon had a restless night, and while he was desperate for sleep, he couldnít get comfortable. His SATS fluctuated from the 90s to the 80s.

    Jim sent me to...
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    ((((((Hugs to All)))))) ~ Thank you funnylegs4...

    ((((((Hugs to All)))))) ~

    Thank you funnylegs4 and Donna ~

    As I suspected Jon's 100 SATS reading did not last. But that's fine, because he's been holding steady all night and day in the...
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    A Christmas Miracle

    ((((((Hugs to All)))))) ~

    Donna ~

    Thank you so much!

    The good news is: Jon has been off of O2 most of the day, with SATS ranging from 85-96. The 96 was brief, but he's generally in the...
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    ((((((Hugs to All)))))) ~ ANN ~ I was...

    ((((((Hugs to All)))))) ~

    ANN ~

    I was relieved to read your post on the MS forum that Erythromycin and Reglan are not in consideration for your treatment. My experience has been that GI issues...
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    ((((((Hugs to All)))))) ~ callyflower ~ ...

    ((((((Hugs to All)))))) ~

    callyflower ~

    Thank you for the link to the mobile service! Very comprehensive care provided by them! The question is whether they would accept Jonís Medi-Cal, and...
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    The Mysterious Pattern

    ((((((Hugs to All)))))) ~

    Everything was fine, until Jonís SATS dropped again last night. Up came the fluid into his chest and out of his trache. Onto O2 we go.

    He was sleeping well, but even...
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    Today's Turning

    ((((((Hugs to All)))))) ~

    Thank you Donna and funnylegs4 ~

    TODAY

    After a good weekend off O2, holding SATS in the 90s, and being well, we turned Jon this evening. Since it's been a week,...
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    ((((((Hugs to All)))))) ~ Thank you Virginia,...

    ((((((Hugs to All)))))) ~

    Thank you Virginia, Donna, and funnylegs4 ~

    UPDATE

    I've discussed the last few days of Jon's health issues on Jim's thread, as it's been affecting Jim's RA.

    The...
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    Still Doing Well

    ((((((Hugs to All))))))~

    Jeanie ~

    Jon would definitely love to be in the living room for the big game, especially if John is here. Iím not sure whether he could tolerate being in the chair...
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    Corner Turned

    ((((((Hugs to All)))))) ~

    How happy I am to report that Jon is 100% better! He is sleeping about 9 hours/day, which he needed desperately. No more seizures! Yay! Off of O2! Yay! SATS holding...
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    Seizures, Suctioning, Sleep ...

    ((((((Hugs to All)))))) ~

    Jon had to go back on O2 last night. Eventually, we had to crank it up to 2.5 liters. Full of fluid, gagging, nearly vomited. Lots of coughing, some suctioning.
    ...
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    ((((((Hugs to All)))))) ~ Another long night...

    ((((((Hugs to All)))))) ~

    Another long night with fluctuating SATS and suctioning. We're trying to limit the suctioning, as it can beget more mucous. We're encouraging Jon to cough it out on his...
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    ((((((Hugs to All)))))) ~ Last night, Jon...

    ((((((Hugs to All)))))) ~

    Last night, Jon filled with fluid, SATS dropped, at one point to 59, suctioning, vomiting, oxygen at 2 liters, etc. It started about 10 p.m.

    Jim went to bed at 11 and...
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    First Turn on New Mattress

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Having watched you perform in your film, I would never have guessed that you were born in Russia. You do have an American accent, because English is your...
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    ((((((Hugs to All)))))) ~ callyflower ~ ...

    ((((((Hugs to All)))))) ~

    callyflower ~

    Thank you for that great recipe! I'm Instacart shopping at Whole Foods tomorrow, and I've added the ingredients to my list. And Jon's nurse brought us...
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    Comfort Is Everything

    ((((((Hugs to All)))))) ~

    Virginia ~

    Thank you ~ Jonís smile lights up our world.

    ANN ~

    Thank you ~ We couldnít be more relieved or more pleased with the outcome.
  67. Replies
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    ((((((Marcie)))))) ~ *birthday HAPPY...

    ((((((Marcie)))))) ~



    *birthday HAPPY BIRTHDAY TO JONATHAN!*birthday


    Wishing you health, joy and all that your heart desires!

    Yes, Marcie, the years do fly by.
  68. Replies
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    5098 ((((((Hugs to All)))))) ~ As you can...

    5098

    ((((((Hugs to All)))))) ~

    As you can see by Jon's photo, the lift and turning went very well today! (*hsmile)

    We were all amazed and thrilled that Jon did so well. Perhaps the Tylenol...
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    Improving!

    ((((((Hugs to All)))))) ~

    Marcie ~

    Thank you so much for asking.

    Yes, Jon slept well last night. He also tolerated 50 cc/hr of formula.

    His urine output slowed down from 50 cc/hr to...
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    Getting Better!

    ((((((Hugs to All)))))) ~

    Jeanie ~

    Iím so glad you found the thread! Thank you, ANN!

    ANN ~

    His SATS are holding at 95 now! Yay! Progress!
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    Another Long Night

    ((((((Hugs to All)))))) ~

    What a night!

    Jon blew up like a Macyís Parade Balloon!

    We suctioned him, and he began gagging, then vomited a small amount. It went downhill from there. No...
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    ((((((Marcie)))))) ~ Oh, my dear friend, I am...

    ((((((Marcie)))))) ~

    Oh, my dear friend, I am so sorry.

    Holidays are especially difficult, particularly in the very beginning. Taking it one day at a time is all you can do. And some days,...
  73. Replies
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    ((((((Hugs to All)))))) ~ Marcie ~ ...

    ((((((Hugs to All)))))) ~

    Marcie ~

    Unfortunately, Jon is still filled with fluid and air. The MOM has only slightly moved his bowels, which are bone dry. Itís difficult to balance hydration,...
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    Happy Thanksgiving!

    5090

    ((((((Hugs to All)))))) ~

    I hope that everyone has enjoyed a beautiful Thanksgiving.

    callyflower ~

    What a relief it must be for you to defer the procedure. I pray that you will...
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    ((((((Hugs to All)))))) ~ Virginia ~ It's...

    ((((((Hugs to All)))))) ~

    Virginia ~

    It's been much worse for us than it is now. We've spent many holidays, including Christmas, in ICU. We treasure any holiday where we aren't calling...
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