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Thread: What Is Next For Jonathan?

  1. #191
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    ((((((ANN)))))) ~

    Thank you so much. I just sent an email to our doc right after Jon had another 5 minute seizure, which was pretty intense. Jim is with him. We have to put out the trash tonight, and we planned to do it together, because we have about 50 large boxes to put out. We'll take turns now.

    We're definitely increasing his doses tonight. Praying for the best and that we can get the brand name Dilantin and that it will work.

    Long night ahead ...

    We so appreciate your prayers. And many back for you. Anxiously awaiting results of your gastric emptying study.

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  3. #192
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    Default Oxygen

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

    Last night, Jon’s SATS dropped to 77, so we had to put him on 2 liters of O2. Lots of suctioning.

    His blown up belly, full of air and water, was huge and rock hard. At one point, he was gagging, and I was ready with the basin. Thankfully, he didn’t toss his cookies. We put him back on his formula at half his usual rate.

    I camped in Jon’s room on the chair bed, nodding off periodically, as I was severely sleep deprived. Jim tended to Jon to give me a rest. Jim went to bed at 11 and relieved me at 3 a.m. I gave Jim my shift report, and prepared for bed. At 3:30, when my head hit the pillow, I began my prayers, “Dear Lord …” Zzzzzzzzzzzz

    I was awake at 7:30, but I slept soundly enough to have dreams (which I can’t recall). I did hear Jim with Jon, suctioning twice. The first time was at 4:30, the second time was at 5:00, when Jon coughed on his own, and his SATS came up to 94. At that point, Jim knocked the O2 down to 1 liter.

    Jon held SATS of 89-92 for most of the day on 1 liter. And he slept and slept and slept.

    When he woke up about 3 this afternoon, he started coughing on his own and got rid of a ton of mucous. We suctioned once, and his SATS stayed at 92, so we took him off of O2. He was happy to be able to talk to us again. When his SATS dropped to 86, we decided to put him back on O2 at 1 liter for awhile. He needs time to recover and not work hard at breathing. That was a good trial run.

    Dare I say, so far no seizures …

    Our doc replied today that he’d put in the script for branded Dilantin and warned me that Medi-Cal won’t pay for it. He said he’d write a script for authorization by Medi-Cal, based upon medical need: Jon can’t tolerate these generics, like he did the old one, and he’s seizing. I told him that we’d pay for the Dilantin. I am not going to chase after Medi-Cal and wait for their decision, while Jon is prone to seizures.

    Jon is in good spirits, which always amazes us. He is one tough, brave soldier.

    We’ve been here many times before, where we go into “ICU mode.” We remain hopeful that we can get Jon back to his “normal” in the next couple of days.

    Thank you all so much for your love, prayers, and support. We love you.

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  5. #193
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    You did an excellent job, Rose! The two of you. Well done. I hope you have a quiet night.

    ANN
    There comes a time when silence is betrayal.- MLK

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  7. #194
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    Hi Rose, How is Jon? Is he still seizure free? I hope so! I am thinking of you ALL THE TIME - are you near the fires? Gosh, the fires are just devastating! Sending love and prayers, xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  9. #195
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    Thumbs up Improvements

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

    Thank you, ANN and Donna ~

    Jon was able to go off of O2 last night. He held SATS of 89-91 all night. He slept very well, falling asleep at 2:15 a.m. and waking at 10:30 a.m. He is tolerating his full hourly rate on his formula, so we increased his hydration and nutrition.

    His urine output is low, probably due to less fluids going in. That is increasing now. No bowel movements, also from reduced nutrition and fluids. He has less air in his gut, so his belly is softer.

    Because Jon is producing a lot of guck via his catheter, we irrigated it today. His output has improved.

    We were able to pull him up in the bed, laying him flat, without a problem today. We canceled John for turning, because we don't want to tempt fate. We will wait until Monday.

    Jim wanted to relieve me at 1:00 this morning, but he woke up in pain and needed a steroid. I told him to go back to sleep. He woke up about 2:45, feeling better. I got to bed at 3, and fell asleep fairly quickly. Awakened at 7:30 this morning with our neighbor's gardeners mowing and trimming trees. So inconsiderate of the rest of the neighborhood. Many people sleep in on Saturday, as it's their only day to do so, with work M-F and church on Sunday.

    Tonight, Jon's SATS are 93-94, which is excellent! And his heart rate is finally coming down.

    And he hasn't had any more of "those things we shall not name."

    So, we made it through another crisis.

    I am absolutely going to pursue the branded Dilantin.

    Thank you for your prayers, love, support and positive healing energy.

    Oh, and Donna, I am wrapped in your shawl every night as I camp out on Jon's chair bed. Very comforting, like a hug from you. Thank you so much!

    We love you all ~

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  11. #196

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    Rose,

    How’s Jon doing? As always prayers going up for all of you.

    Marcie

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  13. #197
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    Thumbs up

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

    Thank you so much for your prayers.

    Jon fell asleep easily last night at 12:15 a.m. He had a peaceful night's sleep and woke up at 10. He also took a little nap this afternoon.

    SATS are 94-96, which is excellent, and heart rate is in the 90s now. His bowels are moving, and his urine output is improving.

    He is all smiles today, which is a very good sign.

    I asked Jon whether I could borrow one of his balloons for Michael, as today is his birthday. Of course, he said, "Yes!" I've lit candles in Michael's room. This is Michael's 48th birthday. How we miss him!

    We hope that this trend continues for Jon, and we are so grateful that he is on the other side of his crisis now.

    You, Nick, Brian, Jon and your entire family are always in our prayers ~ strength, peace and comfort ~

    We love you ~

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  15. #198
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    This is such good news, Rose!

    Happy birthday to angel Michael.
    ANN
    There comes a time when silence is betrayal.- MLK

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  17. #199

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    Great news that Jon is doing well! Happy belated birthday to Jon and happy birthday to Michael up in heaven.

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  19. #200
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    Hi Rose, I am so glad that Jon is feeling better! And I hope you had some sleep my dear. I am worried about the fires in CA - I hope you are no where near them! I tried to figure out via a google search but I don't know the state well enough to tell if you are in harm's way or not. I have two nieces who both live in Venice beach and they are OK but my niece's boss lives in the hills and they have been evacuated. The fire is only 10 miles from the office! It's horrific and so scary - the fires are moving so fast! How can people who are very vulnerable move quickly enough to evacuate? Anyway, sending you lots of love and prayers for the whole state! xox
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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