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Thread: Day 10: Jon Is Coming Home Tomorrow

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Day 10: Jon Is Coming Home Tomorrow

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


    I waited all day for the ID doc to show up to give the orders for the Zosyn at home, so we could get the paperwork in process. He didn't show. But he did call tonight about 9:30 to let me know that he's writing up the orders for Jon's discharge tomorrow.

    The feeding pump and formula are already in place for delivery tomorrow. In the morning, the IV pump will be ordered along with the Zosyn, and all of that should arrive at our house in the morning. Jon's home health nurse will be here about 1:00 or 2:00, so that's our goal.

    I also talked to his HH nurse tonight, and she assured me that everything will be just fine, and we won't have any problems with the IV. She will train us. Jon will need to finish the course of Zosyn, which means he has 6 days left at home on it. Please pray with us that Jon will not pull out his PICC line!

    Jon slept today for 12 HOURS! At 3 a.m., Jim asked the nurse to give him Ativan, and within 45 minutes, Jon was asleep. He woke at 3:45 this afternoon. During the entire 12 hours, his vitals were excellent. He needed that blood transfusion, obviously.

    I met with the nutritionist this morning, and she provided me with a complete breakdown of his food and water requirements, so we know exactly how much to give Jon. No over or under hydrating.

    I also met with the neuro, who suggested an increase in one of Jon's seizure meds (Depakote), with which I agree. He told me that he had asked the ICU pharmacist about the nasal Versed as a rescue drug for Jon's seizure, but the pharmacist wasn't sure whether that drug would be available to the public. It may just be a drug that only paramedics can use. That's absurd, if that is the case. Because that drug saved Jon's life, and we waited a long time for the paramedics to arrive, get in the house, assess Jon and give him the Versed. He was seizing and dying that whole time. If we had Versed here, that wouldn't have happened.

    Jon's pulmo doc suggested another change in Jon's trache this morning to Jim. Unfortunately, the doc left for the day, so we have to re-address this in the morning. Jon's current trache is the same one he had for 14 months, without any problems. If we change to a cuffed trache, it can't be plugged, which means Jon won't be able to speak. That is unacceptable and contrary to Jon's quality of life. I don't know why the doc can't make up his mind. The only time Jon has been on oxygen at home is last Monday during his seizure. I'm hoping we can both get on the same page tomorrow.

    We are just thrilled that Jon is coming home, while at the same time a tad bit nervous about learning the IV. We feel fairly comfortable with the pump feeding, as Michael was on the pump.

    Jim will stay at the hospital with Jon in the morning, so that I can do some much needed housekeeping, and get Jon's room all set up for the new equipment.

    I hope that I have a moment tomorrow to go to the Towers ICU to tell Roslyn that I'm leaving with Jon and give her another hug.

    Thank you all so much for your love, prayers, and support during this crisis. I know that God hears our prayers, and that He intercedes on Jon's behalf.

    I am so grateful to be bringing our boy home.

    We Love You!

    God Bless You!

    Love & Light,

    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.

  2. #2
    Distinguished Community Member houghchrst's Avatar
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    Yay!!! I am absolutely thrilled for you all.

  3. #3
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    Great news Rose. I am so happy for all of you. Now Jon can recover in peace and quiet in his own room, own bed and his much loved environment. God is good!
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  4. #4
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    Oh, I am so happy for you all! Prayers that all goes smoothly with the trache decision, the IV.... everything. Thank God that Jon had a good long sleep, yay!!! xo
    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:

  5. #5
    Distinguished Community Member andromeda31's Avatar
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    Oct 2006


    Great news! Good luck on the IV training, hope it all goes smoothly! So glad you all get to be back at home!

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

  6. #6
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    Default hooray!

    Hi Rose, Jim and Jon

    How exciting that Jon will be coming home soon. That is great news and a testimony to God's presence with you during this distressing time.

    You will be fine with the IV training. It is a good idea to get home ASAP. Hospitals are essential when someone is in a crisis, but hospitals are also full of bugs.

    Fantastic news that Jon slept for 12 hours and his vitals remained excellent. Sleep itself is such a wonderful healer. Vitals can easily go down during sleep, so Jon did well and excelled.

    Versed (Midazolam) can indeed be a miracle life saving drug. It can also be absolutely potent if used with other emergency seizure stopping drugs at the same time. One possible negative side effect is respiratory distress. As you already know Rose, as if I could tell you something you don't already know , Versed is a benzo and as such will slow the whole system down. At Grant's day centre there is a young lady, probably 20 years old, who gets the versed Buccal (via the mouth inside the cheek). Most of the time it puts her straight to sleep after a seizure. We hope that you will be allowed to use it at home.

    The pump feeding will be quite straight forward once you get the hang of it. We hope that the pump feeding will be phased out when appropriate.

    If you get to spek to Roslyn tell her that folk are praying for her mum.

    Looking forward to the post entitled 'HOME' :)

    God bless you and ALL our love to you Rose, Jim and Jon.

    Paul Alison and Grant the champ.
    Grant's story in pictures and music. A must see :)
    Seeya there :)

  7. #7


    Great news that Jon is coming home tomorrow. You can do the IV with no problem. I did the PICC line IV antibiotics for my DH for several weeks. It isn't that bad at all.

    Sending prayers for all of you!!


  8. #8
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    That's wonderful that he is coming home! So happy for you!

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