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Thread: Day 5: A Very Long Day

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Post Day 5: A Very Long Day

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

    Jon is doing well, thankfully. All vitals have been excellent today. He is off of oxygen, and is receiving misted room air. His trache can't be plugged, because it is specifically for a vent, so he has to have continuous air via the O2 outlet, with mist. So he has a "T-bar" connected to his trache, which has a built in catheter for suctioning. That's good, although the catheter is difficult to slide through the mechanism.

    But the day was not without its drama and trauma, beginning with his nurse not turning off his food an hour before his meds were due this morning (Gtube food must be turned off 1 hour before and after Dilantin dose), so she was an hour late in giving him his meds. Then, she was busy with her other patient, and forgot to turn on his food.

    We are on a tight schedule here with meds, because all of his other meds have to be given two hours before or after his Dilantin. We can't afford to be off by an hour. His food is a critical component in returning him to health, as he has been malnourished for months, because of his underlying problems preventing us from feeding him his 6 cans/day.

    The Nursing Coordinator (NC) took over for Jon's nurse, as I was becoming a bit perturbed that Jon had been ignored during the 2 hours between Jim's leaving and my arrival. The other patient had extreme and intense needs, and I understand that better than anyone, but Jon has some pretty significant needs too. Just because he isn't on a vent doesn't mean that he can be left unattended.

    The NC and I reviewed Jon's chemistry. I do this every morning with Jon's nurse, because I need to know his WBC, hemaglobin, sodium, potassium, etc. so I can see what is happening with him. All things are improving in that area. WBC is very good, but his hemaglobin is still quite low (blood transfusion cusp).

    I asked to see Jon's seizure meds levels, and they were not there. Why? Because they weren't ordered. Why? I don't know, since Jon's doc told me he would write a standing order for a daily level draw. But he didn't. It's extremely important, especially since we started Synthroid yesterday.

    I was steaming at this point. The NC knows me, and she assured me that the lab still had Jon's blood and could run the tests. She took care of that and returned to tell me his levels, which were all in his therapeutic range.

    I didn't go to the chapel or my new retreat for my soup today. I couldn't leave Jon, as there was no one to keep an eye on him for the 25 minutes I would be gone. He is sleep deprived and at risk for a seizure. I drank my soup in the alcove of Jon's room, as I don't like to eat in front of him, since he can no longer eat orally.

    Jon had been awake since 3:00 p.m. yesterday, when the RT woke him to suction. That's 4 hours of sleep in the last 3 days. He needs to sleep, or he will seize again.

    The NC appeared at Jon's door in late afternoon to tell me that Jon's was being transferred from ICU to "Step Down," which is the old ICU, where Jon was last year for 40 days. Ten beds in the unit are reserved for ICU, the remainder are for Step Down, which is also 1 nurse to two patient care. Small cramped rooms, and NOISE TO THE MAX. No privacy. It's not very pleasant. And he doesn't sleep when he's in there.

    I begged her to keep Jon in his nice quiet large room just until tomorrow, so that he can get some sleep. She said, "we'll see."

    She returned an hour later, about 4:30 p.m. to tell me that a room opened up in Step Down, and the unit is full to the brim.

    Again, I pleaded with her to leave him in the new ICU, where it is quiet, to get sleep. "It's 4:30 already, what's the point? I have to work with the Step Down day nurse, who will have him for a couple of hours, and he'll have a new night nurse, instead of the same nurse he had last night. Starting all over. It doesn't make sense. And he will not sleep over there. I'm begging you, let him stay here just for tonight."

    Our ICU is not full. Half the unit is empty. They don't need Jon's room for another patient.

    "Well," she said, "he's not really critical anymore, so he doesn't really belong here."

    I countered, "If he has a seizure in Step Down, he'll be intubated, and brought back here. It's happened before, when he's been released from here too soon."

    She said, "I will see what I can do, but he may have to move."

    I sighed, "What is the room number?"


    My knees buckled. I began crying.

    "Do you know that room?"

    "Yes," I stammered. "That was Michael's room."

    By now, I was sobbing, "Please, please, please don't make me take Jon into that room. I cannot cope with that. I just can't. Please, I am begging you. It is hard enough for me to be anywhere in the old ICU. But I cannot go into that room. Please."

    She apologized, said she understood, and that of course, she wouldn't put me through that.

    After she left, I went into the alcove of Jon's room, with the curtain drawn, and I wept. I felt as if the entire universe was crashing in on me, my head was throbbing, my heart was pounding.

    I had to pull myself together for Jon, and I did. I sat beside him, held his hand, and assured him that everything would be okay.

    A little while later, she returned, "We have another room."

    Still quite shaken, I told her that I had just had a slight breakdown, and I can't take any more stress today. If Jon doesn't get some sleep soon, he will seize. I know it. I begged her again to leave him in this room, so he could get some sleep. She said she would see what she could do, recognizing that I was not in my usual strong coping state.

    Within a few minutes, she returned. She asked the ICU doc (who sits in the ICU office all shift), who knows Jon (admitted him in 2009), if Jon could stay, and explained the situation. He said, "Absolutely. Don't move him."

    My prayers were answered.

    Meanwhile, Jon didn't go to sleep. I waited for his night nurse to come on board, and I discussed with her that if Jon wasn't asleep by 9:30, I wanted him to have 1 mg of Ativan. She agreed. (So did his day nurse, with whom I developed a rapport, when she was able to come to the room during the day, and at the end of her shift, we hugged, and apologized to each other for the bad start in the morning.)

    When I called her at 9:15, she said that Jon was still awake. So we decided to give the Ativan.

    I waited for her to call me back to tell me that Jon was asleep. Finally an hour later she did. But she told me that the on call intensivist had stopped by on his rounds, and examined Jon, even opening his eyes! WHAT PART OF DON'T DISTURB JON WHILE HE SLEEPS DON'T T HEY GET?!?!

    We are praying that Jon will sleep for several hours tonight, undisturbed. Tomorrow, he has to be moved to Step Down. I don't think I'll have a choice, unless Step Down fills up, and no rooms are available.

    Tonight, I feel like I've gone 20 rounds with Mike Tyson. Every fiber of my being aches. Advil and bed are in my very near future.

    Thank you all so much for your prayers, love and support. I appreciate it more than I can say. Let's all pray that Jon will be home early next week.

    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
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    Oct 2006


    Dear Rose, Jim and Jon ((((( HUGS))))

    Rose you have certainly been through a lot on day 5! Boy oh boy.

    In ICU you would certainly hope that the nurses are able to get their act together. Missing out on the feed timing in relation to the balance of the Dilantin, is not good. It is very poor.

    Very good news that Jon's blood balances are very good.

    Rose, you are absolutely right. Jon needs to sleep. Rose, many years ago we tried a drug, sorry I do not remember the name, to get Grant to sleep. It is a drug that is used in ICU to put people to sleep. A very powerful drug and not a benzo. Maybe that is a drug you could try for Jon to help him sleep.

    Noises in certain circumstances can certainly bring on seizures. Many years ago Grant was very unstable in the ward with three other children. Any noise would get him seizing again. The doctor very kindly allowed him to be moved to a room on his own.

    Praise the Lord that Jon did not have to be moved out of ICU. God answered your prayers very quickly, Rose.

    We join you in prayer that Jon will be able to sleep and that he will be home soon next week, and also that you and Jim will be able to have a rest.

    God bless and Jesus is Lord.

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

  3. #3
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    Oh My God. I am emotional reading this right now. God help you, why do they have to put you and Jon through this trauma to get a simple request of one night undisturbed, medically necessary sleep? Why?????? Oh my friend, my heart is with you and your dear son. Prayers going up for sleep, peaceful sleep, no seizures and healing of bodies, hearts, minds and spirits. Love, 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:

  4. #4
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    Glad his vitals are good. Jeez, what a rough day. Horrible that they were late with his food and won't let him sleep. I'm sorry you had the meltdown. That must have been super hard on you. Hoping and praying things get better.

  5. #5
    Distinguished Community Member andromeda31's Avatar
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    That sucks that they put you & Jon thru all that! ((((hugs)))) Praying that he gets well enough to go back home soon so you all can get some good sleep!!!

    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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