Earth Mother 2 Angels
04-06-2009, 12:43 AM
{{{{{{{{{{{{ THANK YOU ALL AGAIN AND AGAIN FOR YOUR LOVE, PRAYERS, & SUPPORT }}}}}}}}}}}
A MONTH OF SUNDAYS
Today is Jon's 4th Sunday in the hospital, with all but 2 days of it not in CCU. In that time, he has endured sheer hell, with:
tubes down his throat and in his nose,
2 attempts at extubation of the throat tube, 3 re-intubations of the throat tube,
a central line insertion in his neck,
a PICC line insertion in his arm, pulsating,
warm plastic wraps on his legs to prevent DVT,
1/2 hourly squeezes of his arm for blood pressure readings,
constant jabbing of needles for arterial blood gas draws, or other blood draws, when the PICC line clogs (thanks to Dilantin),
the 6 am shoving of a hard x-ray behind his back, being moved from his room to x-ray unit where he was transferred onto their hard table and back to his bed for the hips x-rays, x-rays of his Gtube placement, every NG tube placement in his nose or the OG tube down his throat,
being turned every two hours and tossed about like a sack of potatoes,
invasive procedures including a bronchoscopy, a procedure to examine his heart, Gtube placement, trache placement,
receiving countless units of blood and albumin, as well as insulin when his blood sugar goes up past 150,
deep suctioniong down his throat several times a day
swelling in his tissues, with basketball sized testicles and a disappearing penis, thundering thighs, and doughboy arms, a gain of 30 pounds of fluid,
a racing heart, which barely comes down to 99 most of the time,
assaults on his system by infection, and the drugs used to treat them, and the drugs used to treat their side effects, and the mind numbing drugs that zone him out,
2 tonic clonic seizures, 30 and 15 minutes in duration, requiring 4 and 6 mg of Ativan per seizure,
a week of myoclonus jerking, before anyone realized that his Dilantin level was too low, and Levaquin was messing with it,
a week of Merrem, which resulted in a depletion of his Depakote, which resulted in 2 seizures,
MRSA that won't go away, with tons of Vancomyacin,
FEVERS,
sleep deprivation for a month of Sundays,
constant interruptions, constant talking, constant activity all around him every day, all day, all night,
listening to Jim and me repeating continuously our life story, Michael's illness and passing, Jon's illness and hospitalizations,
hearing us advocate and fight for his needs, from something as major as having all of his teeth extracted to getting housekeeping to take out our overflowing trash bins,
never a moment's peace for Jon,
no ability to speak, with a tube down his throat or a trache in his neck, frustrated to the maximum, because he can't communicate,
zoned out on Ativan, or Versed, or Fentynal, or Morphine, or his seizure meds,
asleep, awake, asleep, awake awake awake awake awake, asleep, awake awake awake awake awake,
strangers every day touching him, tending to his needs,
no movies, no radio, no Lakers, because he is just too messed up to care or be interested,
hearing promises from his loving parents that all of this is "temporary," and "you will be well and home soon," or "we're so sorry that this has happened to you, and we're doing our best to prevent these things and get you home," or "keep fighting, Jon,"
knowing that we are crying, even though we try to hide it from him,
so, it is no wonder, that after a month of Sundays,
today,
Jon would be agitated.
Many times today, Jon would awake when drifting off to sleep, and rock back and forth, his arms taut and his hands grabbing at his gown or sheet, wadding it up furtively, furiously, an exasperated face, his heart racing, his BP rising, his respirations increasing. It was horrible for Jon.
His nurse gave him a 1/2 mg of Ativan, which smoothed him out for an hour. Later in the afternoon, as we had things to do to/for him, including the trache change, I asked for another 1/2 mg of Ativan. He was fairly relaxed for an hour, then he couldn't sleep and again became irritated.
Jon's neuro visited, but Jon didn't go into his rage for him, of course. He did that while the neuro was in the other room with another patient, and again after the neuro left the floor. Figures. So, I asked the neuro if he thought this was seizure activity, or if he thought it was related to the drugs, or if he thought it was related to post ictal activity, or what he thought it was. He didn't know. He didn't know. It could be any or all of those things. So we increased the Depakote.
I asked for an EEG, and he said it wouldn't be meaningful. That's odd, since my boys have always had EEG's in the past for seizures. But, I guess the point is that we know that he's seizing, because his seizure med levels are too low, so an EEG won't give us any additional data. And, now we know that his seizure meds are low, because of the Levaquin and Merrem, which I tried to warn all of the doctors would be the case.
He did wean off of the vent successfully today, and he is now on C-Pap, which is tremendous improvement. And his tube feedings will begin tonight at a low rate. That should help him too. I hope, unless the soy is messing with him too (thyroid).
And he still has to undergo 2-3 hours of surgery to remove all of his teeth, then suffer with that horrible pain and pray that he doesn't have another infection from it, and we're looking at another month of Sundays for Jonathan.
Every doctor told us that he needed a trache and Gtube to avoid aspiration, then he seized and aspirated despite those two appliances. In 2003, that awful doctor announced to the ER that Michael was dying, and it was my fault, because I'd refused a trache for him 3 1/2 years before. Michael seized every single day, many times a day. He lived for 3 1/2 years without a trache. Jon has a trache, had one seizure, and aspirated. Where is the logic in this?
Step inside Jonathan's shoes for just a moment, and feel what it is like to suffer what he is suffering, to keep battling when it must feel so easy to give up, to wonder when all of the promises of going home will come to fruition, and whether he will have some of his "old, normal" life back, and to feel his brother's angel wings embracing him to give him the strength and courage to keep going. Or is Michael beckoning Jonathan? I don't know anymore.
Chaplain Rosa visited today, and I so needed her with us. She witnessed one of Jon's "rages," and held his hand, as I held the other, speaking in soothing tones, reassuring him that he was surrounded by love. In her prayer, she asked that God grant us all the strength to endure, and to touch the hearts of everyone caring for Jon and us, so that they hear us and understand us to Jon's benefit. She is so incredibly special to us, and she said that she felt a moment of pure peace while with us, and she knew that is was Michael. "He is always with you."
Today, for the first time, I realized that the wall across from the elevators holds the Tributes and Memorials names. We donated to the hospital for a memorial for Michael, and his plaque was on a wall in the Education building. I was drawn to the huge list, and found Michael's name engraved there. Now, before I call for the elevator, I go to that wall, find his name, and touch it gently with my hand. My precious angel is everywhere. And each person gathered there everyday is blessed by his presence.
All that Jon has gone through, and all that awaits him sadden me beyond description. I could not, and probably would not, put up with any of it for myself. I am left to ask myself, as I did many times regarding all that Michael went through per my interventions, if I am doing him any favors. A daunting and haunting question.
I am letting Jon lead, and if he wants to fight, we will fight too. But, if he should choose to surrender his sword and shield, I would not blame him, because what he is enduring is beyond my comprehension.
While I pray for healing and comfort for my beloved Jonathan, I also pray for Divine Wisdom and Guidance. I love Jonathan with every fiber of my being, and every fiber of my being hurts for him.
Please keep praying for our brave boy, as I know you will, and I needn't ask. And keep the positive energy flowing, as I need shoring up to face the challenges of dealing with doctors now, who were so unkind to us in 2003, the time when I most needed them to show compassion. This will be very stressful for Jon, me and Jim.
Thank you. What more can I say to tell you how much your prayers, love and support mean to us? I couldn't do this without you.
Love & Light,
Rose
A MONTH OF SUNDAYS
Today is Jon's 4th Sunday in the hospital, with all but 2 days of it not in CCU. In that time, he has endured sheer hell, with:
tubes down his throat and in his nose,
2 attempts at extubation of the throat tube, 3 re-intubations of the throat tube,
a central line insertion in his neck,
a PICC line insertion in his arm, pulsating,
warm plastic wraps on his legs to prevent DVT,
1/2 hourly squeezes of his arm for blood pressure readings,
constant jabbing of needles for arterial blood gas draws, or other blood draws, when the PICC line clogs (thanks to Dilantin),
the 6 am shoving of a hard x-ray behind his back, being moved from his room to x-ray unit where he was transferred onto their hard table and back to his bed for the hips x-rays, x-rays of his Gtube placement, every NG tube placement in his nose or the OG tube down his throat,
being turned every two hours and tossed about like a sack of potatoes,
invasive procedures including a bronchoscopy, a procedure to examine his heart, Gtube placement, trache placement,
receiving countless units of blood and albumin, as well as insulin when his blood sugar goes up past 150,
deep suctioniong down his throat several times a day
swelling in his tissues, with basketball sized testicles and a disappearing penis, thundering thighs, and doughboy arms, a gain of 30 pounds of fluid,
a racing heart, which barely comes down to 99 most of the time,
assaults on his system by infection, and the drugs used to treat them, and the drugs used to treat their side effects, and the mind numbing drugs that zone him out,
2 tonic clonic seizures, 30 and 15 minutes in duration, requiring 4 and 6 mg of Ativan per seizure,
a week of myoclonus jerking, before anyone realized that his Dilantin level was too low, and Levaquin was messing with it,
a week of Merrem, which resulted in a depletion of his Depakote, which resulted in 2 seizures,
MRSA that won't go away, with tons of Vancomyacin,
FEVERS,
sleep deprivation for a month of Sundays,
constant interruptions, constant talking, constant activity all around him every day, all day, all night,
listening to Jim and me repeating continuously our life story, Michael's illness and passing, Jon's illness and hospitalizations,
hearing us advocate and fight for his needs, from something as major as having all of his teeth extracted to getting housekeeping to take out our overflowing trash bins,
never a moment's peace for Jon,
no ability to speak, with a tube down his throat or a trache in his neck, frustrated to the maximum, because he can't communicate,
zoned out on Ativan, or Versed, or Fentynal, or Morphine, or his seizure meds,
asleep, awake, asleep, awake awake awake awake awake, asleep, awake awake awake awake awake,
strangers every day touching him, tending to his needs,
no movies, no radio, no Lakers, because he is just too messed up to care or be interested,
hearing promises from his loving parents that all of this is "temporary," and "you will be well and home soon," or "we're so sorry that this has happened to you, and we're doing our best to prevent these things and get you home," or "keep fighting, Jon,"
knowing that we are crying, even though we try to hide it from him,
so, it is no wonder, that after a month of Sundays,
today,
Jon would be agitated.
Many times today, Jon would awake when drifting off to sleep, and rock back and forth, his arms taut and his hands grabbing at his gown or sheet, wadding it up furtively, furiously, an exasperated face, his heart racing, his BP rising, his respirations increasing. It was horrible for Jon.
His nurse gave him a 1/2 mg of Ativan, which smoothed him out for an hour. Later in the afternoon, as we had things to do to/for him, including the trache change, I asked for another 1/2 mg of Ativan. He was fairly relaxed for an hour, then he couldn't sleep and again became irritated.
Jon's neuro visited, but Jon didn't go into his rage for him, of course. He did that while the neuro was in the other room with another patient, and again after the neuro left the floor. Figures. So, I asked the neuro if he thought this was seizure activity, or if he thought it was related to the drugs, or if he thought it was related to post ictal activity, or what he thought it was. He didn't know. He didn't know. It could be any or all of those things. So we increased the Depakote.
I asked for an EEG, and he said it wouldn't be meaningful. That's odd, since my boys have always had EEG's in the past for seizures. But, I guess the point is that we know that he's seizing, because his seizure med levels are too low, so an EEG won't give us any additional data. And, now we know that his seizure meds are low, because of the Levaquin and Merrem, which I tried to warn all of the doctors would be the case.
He did wean off of the vent successfully today, and he is now on C-Pap, which is tremendous improvement. And his tube feedings will begin tonight at a low rate. That should help him too. I hope, unless the soy is messing with him too (thyroid).
And he still has to undergo 2-3 hours of surgery to remove all of his teeth, then suffer with that horrible pain and pray that he doesn't have another infection from it, and we're looking at another month of Sundays for Jonathan.
Every doctor told us that he needed a trache and Gtube to avoid aspiration, then he seized and aspirated despite those two appliances. In 2003, that awful doctor announced to the ER that Michael was dying, and it was my fault, because I'd refused a trache for him 3 1/2 years before. Michael seized every single day, many times a day. He lived for 3 1/2 years without a trache. Jon has a trache, had one seizure, and aspirated. Where is the logic in this?
Step inside Jonathan's shoes for just a moment, and feel what it is like to suffer what he is suffering, to keep battling when it must feel so easy to give up, to wonder when all of the promises of going home will come to fruition, and whether he will have some of his "old, normal" life back, and to feel his brother's angel wings embracing him to give him the strength and courage to keep going. Or is Michael beckoning Jonathan? I don't know anymore.
Chaplain Rosa visited today, and I so needed her with us. She witnessed one of Jon's "rages," and held his hand, as I held the other, speaking in soothing tones, reassuring him that he was surrounded by love. In her prayer, she asked that God grant us all the strength to endure, and to touch the hearts of everyone caring for Jon and us, so that they hear us and understand us to Jon's benefit. She is so incredibly special to us, and she said that she felt a moment of pure peace while with us, and she knew that is was Michael. "He is always with you."
Today, for the first time, I realized that the wall across from the elevators holds the Tributes and Memorials names. We donated to the hospital for a memorial for Michael, and his plaque was on a wall in the Education building. I was drawn to the huge list, and found Michael's name engraved there. Now, before I call for the elevator, I go to that wall, find his name, and touch it gently with my hand. My precious angel is everywhere. And each person gathered there everyday is blessed by his presence.
All that Jon has gone through, and all that awaits him sadden me beyond description. I could not, and probably would not, put up with any of it for myself. I am left to ask myself, as I did many times regarding all that Michael went through per my interventions, if I am doing him any favors. A daunting and haunting question.
I am letting Jon lead, and if he wants to fight, we will fight too. But, if he should choose to surrender his sword and shield, I would not blame him, because what he is enduring is beyond my comprehension.
While I pray for healing and comfort for my beloved Jonathan, I also pray for Divine Wisdom and Guidance. I love Jonathan with every fiber of my being, and every fiber of my being hurts for him.
Please keep praying for our brave boy, as I know you will, and I needn't ask. And keep the positive energy flowing, as I need shoring up to face the challenges of dealing with doctors now, who were so unkind to us in 2003, the time when I most needed them to show compassion. This will be very stressful for Jon, me and Jim.
Thank you. What more can I say to tell you how much your prayers, love and support mean to us? I couldn't do this without you.
Love & Light,
Rose