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when sick?

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  • kim
    hey there i figured i would find out how everyone s kids are when they, unfortunetley, are sick and fighting something big. this adneovirus that sam has, they
    Message 1 of 8 , Oct 11, 2006
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      hey there
      i figured i would find out how everyone's kids are when they,
      unfortunetley, are sick and fighting something big.

      this adneovirus that sam has, they are saying, is worse than
      rsv..good news :(. sam is normally only on a cpap of 4 at home when
      sleeping. now he is on continuous bipap of 15/7 with o2 of 3 liters.

      he is weak. weaker than i have ever seen him. he has slept, almost
      continously for the last 3 days, waking up for a few 1/2 intervals.
      just moving his hands a bit. no spark in his eyes. he has had a low
      grade fever on and off as well. either on his back or head down in
      drainage...there is no way anyone can pick this peanut up becasue
      the level of junk coming out of his mouth is HUGE.

      they are concerend about his sleepiness. he has been on 2 hr
      respitory tx's since he got here and you know how it is in the hosp,
      everyone getting their turn to poke and prod.

      does this sound 'normal' for being so sick? any suggestions or
      comments.

      sam in not trached, never on o2 except blowby when needed

      thanks for your help,
      this one has us worried
      k
    • wendyhughes@btconnect.com
      Hi Kim Don t panic! In my experience, lung collapse really did flatten Zak - but he did begin to pick up after 2 weeks..hope this is encouraging news. Don t
      Message 2 of 8 , Oct 11, 2006
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        Hi Kim

        Don’t panic!  In my experience, lung collapse really did flatten Zak – but he did begin to pick up after 2 weeks….hope this is encouraging news.  Don’t know about adenovirus – probably didn’t even know what it was in “my day”…. And I’ve never heard of it before, I’m so sorry not to be more helpful here.

        Hope he soon picks up we are thinking of you all right now and know just what you are going through.<

        (Message over 64 KB, truncated)

      • kristin cypher
        Kim & Family: I am so sorry to hear the note of fear and concern in your email, and I wish I had more to offer in regard to what would help (medically), but I
        Message 3 of 8 , Oct 11, 2006
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          Kim & Family:
           
          I am so sorry to hear the note of fear and concern in your email, and I wish I had more to offer in regard to what would help (medically), but I wanted you all to know how much we are thinking of you and Sam. 
           
          When Sebi was 18 months old, he became very sick very quickly, and it scared me to the core.  We were visiting my parents in PA, and Sebi (and I) had to be life-flighted to Children's Hospital in Pittsburg, so I know how that feels to have a normally healthy and energetic little one just go limp, and not be himself or reachable at all.  But, the good news is that, almost as quickly as it came, Sebi 'returned' and we began to see him again and realize he was going to be okay.  I think that it's just so hard when they are so sick that they can't really communicate, and just want to sleep.  Hospital sleep is suck sleep - Sebi ALWAYS sleeps more there, because as you mentioned, everyone is bothering him like crazy, and he can't sleep soundly.  It sounds like Sam is just really tired from fighting this, and needs all the rest he can get.  Please don't let them freak you out by making you worry that he's sleeping 'too much'!!  Trust in Sam, know that he is probably stronger than anyone thinks, and hope he is awake and really seeing you asap.
           
          We are really thinking about you guys - it always its so close to home when they are really sick.  Please keep us updated, and we will be hoping to hear good news!
           
          Warmly,
          Kristin

          kim <kimmyk47@...> wrote:
          hey there
          i figured i would find out how everyone's kids are when they,
          unfortunetley, are sick and fighting something big.

          this adneovirus that sam has, they are saying, is worse than
          rsv..good news :(. sam is normally only on a cpap of 4 at home when
          sleeping. now he is on continuous bipap of 15/7 with o2 of 3 liters.

          he is weak. weaker than i have ever seen him. he has slept, almost
          continously for the last 3 days, waking up for a few 1/2 intervals.
          just moving his hands a bit. no spark in his eyes. he has had a low
          grade fever on and off as well. either on his back or head down in
          drainage...there is no way anyone can pick this peanut up becasue
          the level of junk coming out of his mouth is HUGE.

          they are concerend about his sleepiness. he has been on 2 hr
          respitory tx's since he got here and you know how it is in the hosp,
          everyone getting their turn to poke and prod.

          does this sound 'normal' for being so sick? any suggestions or
          comments.

          sam in not trached, never on o2 except blowby when needed

          thanks for your help,
          this one has us worried
          k



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        • Scott & Betsy Grant
          Dear Kim, I m so sorry to hear about your little Sam. We have had our really scary times with our son Kyle, now age 10. He had a time when he was in the PICU
          Message 4 of 8 , Oct 11, 2006
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            Dear Kim,
            I'm so sorry to hear about your little Sam. We have had our really scary times with our son Kyle, now age 10. He had a time when he was in the PICU for a prolonged stay, and seemed very sleepy as well. (There have been a few, but one sticks out in my mind especially..) I think it could very well be due to having to fight so hard with this illness and all the interrupted sleep and medications. I do remember one time though, when I think he had a high CO2. It was a long time ago, and I might be remembering it incorrectly, but if that's what it was, it caused an awful close call. It might be worth asking about that possibility with your little guy.
            Thoughts and prayers for you and Sam,
            Betsy

             
            On 10/11/06, kim <kimmyk47@...> wrote:

            hey there
            i figured i would find out how everyone's kids are when they,
            unfortunetley, are sick and fighting something big.

            this adneovirus that sam has, they are saying, is worse than
            rsv..good news :(. sam is normally only on a cpap of 4 at home when
            sleeping. now he is on continuous bipap of 15/7 with o2 of 3 liters.

            he is weak. weaker than i have ever seen him. he has slept, almost
            continously for the last 3 days, waking up for a few 1/2 intervals.
            just moving his hands a bit. no spark in his eyes. he has had a low
            grade fever on and off as well. either on his back or head down in
            drainage...there is no way anyone can pick this peanut up becasue
            the level of junk coming out of his mouth is HUGE.

            they are concerend about his sleepiness. he has been on 2 hr
            respitory tx's since he got here and you know how it is in the hosp,
            everyone getting their turn to poke and prod.

            does this sound 'normal' for being so sick? any suggestions or
            comments.

            sam in not trached, never on o2 except blowby when needed

            thanks for your help,
            this one has us worried
            k


          • pinksarah21
            Hi, Kim. Sorry to hear that Sam is having such a rough time. Lung problems are among the most serious concerns that we MTM/CNM families have, even for kids
            Message 5 of 8 , Oct 11, 2006
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              Hi, Kim. Sorry to hear that Sam is having such a rough time. Lung
              problems are among the most serious concerns that we MTM/CNM families
              have, even for kids like Sam (or our son Adam) who have never been
              trach'd. I don't have professional expertise in pulmonary management
              of neuromuscular disorders. But Dr. John Bach, who does have that
              expertise, has some info. on his website about "the hazards of oxygen
              therapy" in kids with neuromuscular disorders. Apparently, giving
              oxygen can sometimes cause carbon dioxide levels (CO2) levels to rise,
              causing sedation, etc. (Admittedly, Sam may instead just be fatigued
              by the actual illness, which can wipe out these kids.) Also, Dr. Bach
              advocates that often the most important thing is clearing secretions
              (often with mechanical means like a CoughAssist device, and by
              physically thrusting on the child's belly and rib cage while they
              cough, in order to help their weak cough to clear the secretions). Are
              these the type of "pulmonary treatments" that Sam is getting? Or are
              they just giving him nebulizers and chest percussion? (Chest
              percussion is like clapping hands on chest wall, which may loosen the
              secretions, but it fails to actually clear the secretions if the child
              does not have a strong cough, which is the problem with most
              myopathies.) Assisting the cough seems to really be crucial. And of
              course antibiotics if there is apparent pneumonia, etc.
              Here is an article on Dr. Bach's website:
              http://www.doctorbach.com/healthstate/story.htm
              -Pat
            • DARLENE MILLER
              Hi Kim, Kyle has only been like you describe Sam, when he had the flu and stomach virus at the same time and his Co2 level went to 120. Have them check his Co2
              Message 6 of 8 , Oct 11, 2006
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                Hi Kim,
                 
                Kyle has only been like you describe Sam, when he had the flu and
                stomach virus at the same time and his Co2 level went to 120. 
                Have them check his Co2 level, even though he is on a vent and
                O2 it will cause his Co2 level to rise unless his breaths per minute
                are increased enough to blow the Co2 off.  In Kyle's case they
                didn't have his adjusted enough and his Co2 just kept going up.
                He was out for 3 days with 10 -15 minute intervals of eyes opening
                and closing and hardly moved.  He also had the increased drooling.
                Once they got his Co2 to come down he was back to his old self
                in no time.  I can almost always tell when his Co2 is gone up by the
                look in his eyes.  With any sickness he is usually tired and not
                wanting to do his normal thing, but on average he is back to normal
                in 2 to 7 days.  Just remember what is the norm for one child maynot
                be the norm for another.  Each is different in how they react to
                recovering from an illness.  As in Connor's case.  He takes longer to
                recover from an illness than Kyle does, but his illnesses are usually
                more serious than Kyle. Hope this helps.
                 
                Take care,
                Darlene
                 
                ----- Original Message -----
                From: kim
                Sent: Wednesday, October 11, 2006 12:04 PM
                Subject: [Myotubular_Myopathy] when sick?

                hey there
                i figured i would find out how everyone's kids are when they,
                unfortunetley, are sick and fighting something big.

                this adneovirus that sam has, they are saying, is worse than
                rsv..good news :(. sam is normally only on a cpap of 4 at home when
                sleeping. now he is on continuous bipap of 15/7 with o2 of 3 liters.

                he is weak. weaker than i have ever seen him. he has slept, almost
                continously for the last 3 days, waking up for a few 1/2 intervals.
                just moving his hands a bit. no spark in his eyes. he has had a low
                grade fever on and off as well. either on his back or head down in
                drainage...there is no way anyone can pick this peanut up becasue
                the level of junk coming out of his mouth is HUGE.

                they are concerend about his sleepiness. he has been on 2 hr
                respitory tx's since he got here and you know how it is in the hosp,
                everyone getting their turn to poke and prod.

                does this sound 'normal' for being so sick? any suggestions or
                comments.

                sam in not trached, never on o2 except blowby when needed

                thanks for your help,
                this one has us worried
                k

              • Kimberly Kowalski
                thank you to everyone for their kind words and suggestions, i am passing them on to my husband who is staying with sam at the hospital. he is the same,
                Message 7 of 8 , Oct 12, 2006
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                  thank you to everyone for their kind words and
                  suggestions, i am passing them on to my husband who is
                  staying with sam at the hospital. he is the same,
                  thankfully no worse. yes pat, his resp. tx are
                  nebulizers, ipv, chest pt and cough assist...it works,
                  there is just so much and with the lung collapse i
                  understand it will take a while. at least he is
                  stable.

                  we got off on the wrong foot when a well meaning, yet
                  very green resident gave same TRIPLE the amount of
                  robinol in one dose that he recieves in one day witch
                  took the massive amt of secretions that he has and
                  literally stopped them up so thick we almost lost him
                  from chocking. not a good way to begin your stay.

                  thank god that has past. hopefully it will be all
                  improvements from this point on.

                  thank you again
                  k

                  --- Scott & Betsy Grant <scottnbets@...> wrote:

                  > Dear Kim,
                  > I'm so sorry to hear about your little Sam. We have
                  > had our really scary
                  > times with our son Kyle, now age 10. He had a time
                  > when he was in the PICU
                  > for a prolonged stay, and seemed very sleepy as
                  > well. (There have been a
                  > few, but one sticks out in my mind especially..) I
                  > think it could very well
                  > be due to having to fight so hard with this illness
                  > and all the interrupted
                  > sleep and medications. I do remember one time
                  > though, when I think he had a
                  > high CO2. It was a long time ago, and I might be
                  > remembering it incorrectly,
                  > but if that's what it was, it caused an awful close
                  > call. It might be worth
                  > asking about that possibility with your little guy.
                  > Thoughts and prayers for you and Sam,
                  > Betsy
                  >
                  >
                  > On 10/11/06, kim <kimmyk47@...> wrote:
                  > >
                  > > hey there
                  > > i figured i would find out how everyone's kids are
                  > when they,
                  > > unfortunetley, are sick and fighting something
                  > big.
                  > >
                  > > this adneovirus that sam has, they are saying, is
                  > worse than
                  > > rsv..good news :(. sam is normally only on a cpap
                  > of 4 at home when
                  > > sleeping. now he is on continuous bipap of 15/7
                  > with o2 of 3 liters.
                  > >
                  > > he is weak. weaker than i have ever seen him. he
                  > has slept, almost
                  > > continously for the last 3 days, waking up for a
                  > few 1/2 intervals.
                  > > just moving his hands a bit. no spark in his eyes.
                  > he has had a low
                  > > grade fever on and off as well. either on his back
                  > or head down in
                  > > drainage...there is no way anyone can pick this
                  > peanut up becasue
                  > > the level of junk coming out of his mouth is HUGE.
                  > >
                  > > they are concerend about his sleepiness. he has
                  > been on 2 hr
                  > > respitory tx's since he got here and you know how
                  > it is in the hosp,
                  > > everyone getting their turn to poke and prod.
                  > >
                  > > does this sound 'normal' for being so sick? any
                  > suggestions or
                  > > comments.
                  > >
                  > > sam in not trached, never on o2 except blowby when
                  > needed
                  > >
                  > > thanks for your help,
                  > > this one has us worried
                  > > k
                  > >
                  > >
                  > >
                  >


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                • Kiera Merriam
                  Hi Kim. It seems only natural that Sam would be sleeping a lot, especially with a virus like that. Just takine one breath on a good day takes an incredible
                  Message 8 of 8 , Oct 12, 2006
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                    Hi Kim. It seems only natural that Sam would be
                    sleeping a lot, especially with a virus like that.

                    Just takine one breath on a good day takes an
                    incredible effort for these guys so needing tons of
                    rest during an illness only makes sense.

                    I remember when Liam wasn't well. He didn't have the
                    extra reserve to move his body much and sleeping gave
                    his body the rest it needed to heal.

                    I dreamt of you last night (even though we've never
                    met). Keep the faith.

                    Thinking of you and sending you tons of strength.

                    Kiera

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