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Thread: Day 9: All Systems Go!

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Day 9: All Systems Go!

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

    The blood transfusion worked! Jon's hemaglobin is at a respectable level of 9.4 (from 7.6) today.

    All of his chemistry is very good, and his seizure meds are in therapeutic range. Vitals are excellent.

    The fluid in his torso has been reduced remarkably. Today, I could feel his ribs for the first time since February. I was overcome with gratitude, as the tears glided down my cheeks.

    Katie visited today, and we discussed the feeding protocol. Jon is up to 80 ml/hr now, which is the goal. He is tolerating it well.

    Jim and I discussed tonight whether Jon actually needs to be on the pump, as we could feed him 80 ml/hr via syringe. He would get it all at once, rather than in a slow drip over an hour. We don't want Jon to be tied to a pump for 18 hours a day. We want to get him well, get him in his wheelchair and take him O U T! So, tomorrow I will revisit this with Katie.

    She wants me to give him a multi-vitamin. I don't know how I'm going to work that in with all of his other meds ~ the seizure meds, the Zosyn and the Vancomyacin (antibiotics), and the Synthroid, because they all have cautions about being given too close to vitamins. It will be easier once the antibiotics are finished. In the meantime, we need 48 hours in a day.

    An RT changed Jon's trache today from a cuffed (for the vent) to a cuffless. Now his trache can be plugged as it was at home for the past 14 months. There was a little blood, but nothing like the trache change in the ER. That ER RT is probably the most incompetent and uncaring RT I've ever encountered at the hospital. I hope we never see her again.

    Jon maintained good SATS all day, however he did drop to 89-88 a few times, but then came back up quickly to 97-98. He coughed on his own, which is what we want, of course, but he may need some suctioning, as the trache change probably triggered extra mucous today.

    Jon's pulmo/main doc visited in the morning, and he said that Jon still had some infiltration in his right lung, but the left lung was clear. He suggested that we get another x-ray in 2 weeks. Well, that would need to be a portable x-ray at home or a trip to the hospital. Years ago, Michael had a portable x-ray at home, but I don't know whether that service is still available, nor whether Medicaid will pay for it. I began processing this news, thinking ahead.

    After the doc had reviewed Jon's chart, he came back in and said, "I'm sorry. I just rechecked his x-ray results. Both of his lungs are clear. I don't know why I thought the right lung still had infiltration. But, he's fine, and he won't need another x-ray." That was good news.

    The on call infectious disease doc, who I really like and who treats me with such kindness, said he was deferring to the head honcho ID, who will be in tomorrow. We are waiting for the ID to release Jon. He will decide on the Zosyn at home, dose, frequency, duration of treatment and write the prescription for the home health agency.

    I spoke with the discharge coordinator today to get the ball rolling. She remembered us from last year. I gave her names and phone numbers for the home health agency, and she said she would call them to determine their protocol. I will check in with her tomorrow.

    We are aiming for Thursday as his homecoming day, but it could end up being Friday, if there are any snags in the process. There usually are snags, I'm sorry to say.

    It was a busy and noisy day, and Jon didn't get more than a couple of hours of sleep. More reasons to get his buns home, back in his own comfy bed, surrounded by peace and quiet.

    Speaking of beds ~ the first 4 days in ICU, Jon's bed beeped every 20 minutes, blinking "Service Required." We couldn't program it for Opti-Rest, which is similar to Jon's bed at home. The mattress was too hard. I finally got the bed changed out. He had it for ONE DAY, and then he was transferred to Step Down.

    Immediately after being placed in the SD bed, the alarms went off, and the blinking "Service Required" light appeared. What are the odds? A nurse managed to fix it, or at least get the light to go off, but I never hear the bed exchanging air, and the mattress is too firm. Today that light began blinking again. No one could fix the bed this time, and I was given the option of moving Jon to a new bed.

    That sounds so simple, doesn't it? Well, believe me, it isn't simple, and it is quite painful for Jon. Additionally, we would have to move EVERYTHING out of Jon's room, to make space for two beds for the transfer. A lot of commotion for a young man, who needs to rest and sleep.

    At some point, I'm going to write a letter to the hospital president about their beds. There is no excuse for these beds to be broken or requiring service. These are ICU beds for extremely sick patients. They should all be in tip top shape. They should all be serviced on at least a monthly basis. Through the many years that our boys have been in that hospital, the dysfunctional beds have been a thorn in our sides.

    The hospital has poured tons of money into remodeling, and a new patient tower is being built on the north side. I don't care how pretty the floors are in the lobby. I care about the comfort of my seriously ill son. Aesthetics are not why we, or anyone, is there.

    When I left the chapel garden after my soup lunch today, I noticed huge balloon bouquets in the parking lot and on the sidewalk near the hospital's side entrance. A long row of smartly dressed valets awaited the arrival of guests. I learned that this was an "event" to honor wealthy donors. I guess all of these ultra rich folks feel warm and fuzzy, when they see the new colors on the walls, and the new flooring, but if they ever have to lay in one of these beds, they might just realize that that is all window dressing.

    And what's the point of changing out the bed now, so he can have ONE DAY on a functional bed? Yes, I do believe that I need to write a letter about this. But, I'm not a wealthy donor, so it's likely no one will give a hoot about my viewpoint on the need for beds that work properly in the ICU/SD.

    After Michael passed, we did make a modest donation to the hospital in his memory. Michael's name is listed on the wall in front of the elevators, along with perhaps 200 other names. Every day, before I enter or after I exit the elevator, I walk to the wall, find Michael's name, place my finger to my lips for a kiss and touch his name. Oh, how I miss my precious angel.

    This evening, while waiting for shift change, Michael's nurse asked me to tell her the story of my children. The poor gal couldn't stop wiping tears from her eyes. I don't tell their story in a sad manner at all. I merely recount the story and embellish it with the joy my sons have given me. She isn't the first nurse to cry in the telling of our tale, and I know she won't be the last. Through the telling, I feel that I am opening their hearts to a greater understanding of children with developmental disabilities. I have always believed that my boys are teachers, and that I am their voice.

    As she left to give report to Jon's night nurse, she said to me, "You should write a book."

    "I am," I said, "in my spare time." (Because I have SO MUCH spare time!)

    Jon is making great progress. I know that he is ready and anxious to return home, as we are to bring him home.

    Your prayers have worked again! You are all amazing, and I can't even convey my love and appreciation for you. You are a blessing in our lives, and we give thanks for you. Everyday in chapel, I thank God for my beautiful friends.

    God Bless You!

    Love & Light,

    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  2. #2
    Distinguished Community Member
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    Oct 2006
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    Wonderful...prayers for Thursday!!!!
    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:

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



    I would love to read a book written by you Rose! That sucks about the bed....whenever Caitlin was moved to a different room, they always just pushed her in the bed she was in to the new room (so she kept whatever bed the same). Too bad they couldn't have done that for Jon! Hope you all get to go home soon!!

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

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