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Thread: Day 3: Changes and Challenges

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Post Day 3: Changes and Challenges

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

    How wonderful it is to see so many of you here again! I can't thank you enough for your support, prayers, and love. I have missed you all so much!

    Thank you Mike for assisting with re-establishing accounts! BT is blessed by your service to all of us.

    Jon was quite lethargic today, as he only had a couple of hours of sleep during the night shift.

    All of the RT's were busy last night, as there were 4 codes in the hospital. Jim was pretty much left on his own with Jon, and for 2 hours, he had to suction Jon continuously, as he was generating voluminous secretions. When an RT finally showed up, Jim explained the situation. The RT then identified that the trache cuff (a balloon) was deflated! That was causing the secretion overload! If only one of them could have taken 5 seconds to check Jon, he could have been spared that ordeal.

    At home, Jon has a cuffless trache, so we aren't familiar with the balloon. This trache was placed in the ER to accommodate the vent, as the cuffless trache doesn't work with a vent. So, we learned something new.

    The Infectious Disease doc changed Jon's antibiotics today, based on the culture results. Jon has staph and pseudomonas in his lungs. Bactrim was dropped, as was Tobramayacin, which is hard on the kidneys. He is remaining on the Vancomyacin, and now Zosin has been added. The ID doc, who I love and who cared for Michael, as well as Jon for all of these years, researched Jon's antibiotic history and discovered that Jon was given Zosin in 2004, when he had his colostomy surgery. I do not remember that. But then I didn't remember that Jon was on Tobramaycin last year and in 2009! I'm getting OLD and my retention is less than it once was!

    Zosin must be given by IV, and the doc ordered a 2 week course. I about crumbled! "Oh, please I don't want to keep him here for 2 weeks just to get an IV antibiotic! What other options are there?" He answered, "Cipro." Well, I am not a fan of Cipro, and I fear Jon would have problems with it. So, it's Zosin.

    The doc suggested IV at home, as if I've done that a million times. Neither of my boys have ever had an IV at home, but this doc sometimes thinks that I'm a nurse, so he was rather shocked!

    Fortunately, Jon has a fantastic home health nurse, who is like a part of our family now, and she specializes in IV 's. She will train us, because it has to be given 3 times a day, and unless she decides to live with us and give up the agency, we're IT!

    This will just be another notch in our belt toward our honorary nursing degrees!

    The ultrasound of Jon's gut revealed that all of his organs are normal. That is terrific news! Only a trace of water was found in his abdomen, which surprised me.

    As soon as I arrived this morning, Jon's nurse (who has cared for him several times in the past) and I decided to pull him up in the bed and turn him. The minute we laid Jon flat, he began gagging, and I recognized the signs of his ongoing problem of filling up with water, until it comes gushing out of his trache and mouth. We have to suction repeatedly to prevent him from drowning.

    Immediately, I elevated his head and began suctioning the water in his mouth. His nurse suctioned his trache, and we kept at it for 30 mins, until the RT showed up. She also suctioned. This was ongoing for most of the day. His SATS dropped and wouldn't remain steady, so she increased his O2 to 50%.

    His distended belly was rock solid, but venting via Gtube helped to remove some of the gas to soften it.

    Jon's doc from last year, who we love, but who joined the group that doesn't take Jon's insurance, was on call, thankfully. He decided to give Jon 10 mg of Lasix, the smallest dose, to see if it would help him. It barely made a dent. Four hours later, Jon's nurse called the doc, and he said to give Jon another 20 mg of Lasix. When I left this evening, the pee was flowing in greater volume, so I'm hopeful.

    We must get the fluid out of Jon's feet, legs, torso and arms. He is 3rd spacing, and I feel that is the primary factor in these crises, where he expels massive amounts of water through his trache and mouth. I have been afraid to give Lasix at home, because if he reacts poorly, I can't respond to that, where the hospital can.

    Jon's nutritionist visited today and counseled me that Jim and I are probably over-hydrating Jon. She noted that Jon's formula is primarily water, and that we should increase his formula and decrease his free water. I explained that we were responding to Jon's dehydration, which began in February, and she offered that if he had a steady formula/water ratio, he should remain hydrated.

    I would dearly love to return to last year, when none of this was happening, and Jon got his 1 1/2 cans of food every 2 - 3 hours, with no problems. I don't know what changed within him, when he started to fill with fluids in February. That is the mystery that no one can seem to solve.

    But if we can get some of this fluid out of his tissues, perhaps we can return to square one. I am hopeful.

    His nutritionist also suggested that we give Jon a full dose of M.O.M. to see if we can get his bowels moving. I agreed, but I've held off on M.O.M., because it often causes his belly to blow up, followed by the flooding out. We did give him M.O.M., so now we pray for a BM.

    This morning, Jon's doc gave Jim the false hope that Jon might come home tomorrow. While that is a lovely thought, I told Jim that it is impractical. Jon has too many issues to come home right now. I want a resolution to his fluid retention, and I need confidence that the Zosin will not cause him any problems. We also need to get Home Health in place, and that takes time, especially now that we'll be doing IV at home. I'm not taking him home until he is ready, and we are ready for him. I don't want to go back in there for a long time!

    Jon is pretty miserable, and I couldn't elicit a smile from him today. But, suddenly out of nowhere, Jon reached up to me with his arms and pulled me down for a hug. And we hugged and hugged and hugged. How I adore him! He is my heart and my joy. I never ever want to let go of him!

    We take it a day at a time, that is all we can do. Every nurse, RT, doc, well, everyone actually, has said to me, "You know Jon. In his own time. He will rebound and amaze us all again!" They also praise us, because we have managed to keep Jon at home for 14 months. I pray that with what we learn from this crisis we'll extend that time to many years.

    Thank you all again so much for spreading the word and increasing the prayers for Jon. And for being here to support us. You'll never know how much it means to me.

    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


    My sweet friend, I logged on to see if there was an update from you. You all are in my prayers.


  3. #3
    Distinguished Community Member
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    Oct 2006
    So. Calif.


    You have all been through so much, you must be very tired. Take care of yourself Rose. Jim and Jon need you. Continued prayers for Jon's complete recovery and that he can return home to familiar surroundings very soon.
    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
    Distinguished Community Member andromeda31's Avatar
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    Oct 2006


    Hi Rose,

    Yes, it is much better to be ready for home vs going too early and needing to go back. Praying everything falls into place so you don't have to be at the hospital too much longer! Wow, IV's now could probably pass the nurses licensing exam! :)

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

  5. #5
    Distinguished Community Member
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    Oct 2006
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    OH I am just reading this now - it's almost 11pm. Thank you so much for keeping us updated, Rose. I pray tonight that Jon doesn't get filled up with fluid as happened last time he was in hospital. I pray that the zosin will work with no side effects and I say a grateful prayer that you had a wonderful, long and deep hug with your darling son today. Thinking of you as always and praying that you will be all home when the zosin is finished - and Jon will be well, xoxDonna
    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:

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