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RE: [Myotubular_Myopathy] SATS monitoring at night/day

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  • Wright, Janice (J)
    Hi Jess, I think your O2 levels for the night (94) are too high. We have been informed that anything above 88% is good. Matthew s limits are set at 86% day
    Message 1 of 7 , Jan 12, 2004
      Message
      Hi Jess,
       
      I think your O2 levels for the night (94) are too high.  We have been informed that anything above 88% is good. Matthew's limits are set at 86% day and night.  Given his current pneumonia,  his sats drop to this level when suctioning.
       
      At a recent neonatal conference held in SA with International Speakers (UK) the Neonatal Sisters were informed that there is evidence that too much O2 given to ventilated babies may in the long term harm them.  The weaning protocol has been amended and they have been informed that sats of 93% are good and anything above this, the babies should be weaned.  I checked this with our Respiratory Specialist and he agrees and has also had access to the research.
       
      With regard to heart rate,  Matt's limits are set to 170.  When he is well with no fever, his heart rate is less than 160. When it rises above this we start taking action as it is normally a sign of fever or infection.  It does depend on your child.  When Matt had a sonar done on his heart, it did show that it was enlarged.  We believe that it is because of all the hard work it does!!! Matthew's heart is sooooooooo big to accommodate all the people he loves and who love him back!
       
      We have also changed our monitoring of sats. Matt used to have the monitor on 24/7,  but we would end up just watching the machine and not Matthew, also we would then put pressure on Matt and ourselves to wean.  We now just check him once an hour during the day and then continuously during the night. We also don't change the limits between day and night, but then we have 24 hour nursing.
       
      Hope all is well.
       
      Janice
       

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    • Jessica Juckers
      Hi Janice, Thanks for the email, Yes I agree that premature babies should not have too much 02, When Jack was a neonate his sats were never allowed above 96%
      Message 2 of 7 , Jan 12, 2004

        Hi Janice,

         

        Thanks for the email, Yes I agree that premature babies should not have too much 02, When Jack was a neonate his sats were never allowed above 96% when on oxygen in NICU.

        Jack does not have oxygen whatsoever when he is ventilated (unless he is in respiratory distress, or very sick, and times like bad teething, like today. L)

        We set his limits this high at night, because I sleep outside his room, I forgot to mention this.. so I figure by the time I wake up and get to him he would not of dropped too far and he will stay asleep or not wake up fully.

         

        Jack does however requires 02 for a small amount of time when he comes off the ventilator  as sometimes he gets upset , we wean him down to air over a 10-20minute period.

        When he is off the vent he sits 95-99% in air.

         

        If Jack reaches 85%, he is well and truly upset, and forgets to breathe properly he gets worse.

        Jack saturates, at 99-100% when he is on the ventilator all day long, they grade his pressures down every so often as he is coping really well and they think he shouldn’t sit 100% all the time, even in air.

         

        Is Matthew usually in oxygen? When well?

         

        Jessica

         

      • Wright, Janice (J)
        Hi Jessica, I think Matt is a lot more severely affected than the other kids. He has had numerous pneumonias and collapsed lungs that his little lungs have
        Message 3 of 7 , Jan 12, 2004
          Message
          Hi Jessica,
           
          I think Matt is a lot more severely affected than the other kids.  He has had numerous pneumonias and collapsed lungs that his little lungs have been quite damaged.  His Dr says that lungs continue to develop until age 6 so there is hope.  Unfortunately, Matt is continuously ventilated and has only ever been off O2 for about 4 hours a day for about a week, last year Christmas.  Since being sick in October (pneumonia) he has been even more dependent on the vent.  It worries us somewhat in that when he was a baby he spent long hours on CPAP, every time he gets a pneumonia he really struggles to recover.  We noticed from the October bout that he needed a lot more support. Al and I feel that it is a matter of time now before Matt no longer has the strength to recover. Now his pressures are 25/5. His breathing rate is set at 30 and his O2 ranges between 30 and 35. Every time we try to wean Matt he really struggles and then crashes.  We keep him comfortable and supported.  His respiratory specialist recommends that we try to wean the pressures before we do anything else.
           
          Matt was finally his old self, though weak, this weekend. Laughing and up to his old tricks again.  Have bought him this edible (strawberry and grape flavoured) spray foam and he loves the sensation of me spraying it in his mouth and moving his tongue all around.  Very excited when he did this.If you are interested I could try and mail you some though it allegedly is not good for kids under 3.
           
          This morning when I left for work and went to say goodbye and he was shaking his shoulders in time to Kylie - Love at first sight song! Happy that he is getting better, may have to purchase the Kylie CD as he seems to like it. Still no joy with the talking, but we persevere.
           
          Got a letter from a Dr today after some enquiries I had made into falling pregnant again.  We want to look at gender screening and pre-implantation genetic diagnosis, but Al feels that he doesn't want another handicapped child even mildly affected or risk a multiple pregnancy with all the associated risks. Gender screening will not prevent the former and could result in the latter. So I feel a bit sad. The hell I went through with my second pregnancy, not knowing if Nicholas would be affected or not, was too much and I have enough guilt as it is without knowingly putting my daughter through the same sort of uncertainty, although there will be advances in medical science before then.  I just don't know !!
           
          Anyway keep well and great to hear that Jack is doing so well.  Was telling Al about it this weekend (also fish mad) and he also is amazed how well you are coping with having Jack at home.  I don't know what I would do without home nursing and greatly admire you for coping so well, I know I couldn't. Although home nursing is a bit awkward at times,  we at least have good care and some life.  Also cant wait for Matt's wheelchair as he will be more mobile - cant stand just hanging out in his room all day, start to feel claustrophobic. Al had a massive fight with our one permanent day nurse as she was pretty insensitive.  Al and I feel a lot of guilt at Matthew going through the op as his G-Tube fell out after a week (now has a catheter for feeds until we can get a replacement) and he does not like his new trach and cant speak.  She basically voiced this and Alistair let rip at her for her tactlessness.
           
          Keep well and stay strong.
          Janice
           
           

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