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Bronchial Malacia PLEASE HELP!!!

Does anyone have any personal experience with this? My daughter has been very sick for the last month with 4 hospital admissions and the last one a week ago they did a bronchoscopy and found she has bronchial malacia and also laryngeal malacia. She has had significant trouble breathing evidenced by retractions, nasal flaring, grunting, and hypoxia. We have a pulse oximeter at home b/c her brother had severe asthma so we were able to monitor her and found she was going into the mid 80's asleep. While in the hospital this last time for 6 days she was on oxygen every time she fell asleep becuase her saturation was dropping to the 80's. It really helped her rest easier, without it her body would internally signal for more oxygen which would then cause her to not sleep deep and it was just a vicious cycle. So if anyobe has experience dealing with this, please tell me what to do!! They sent her home today even though she was still saturating at 90 while asleep with frequent dips into the high 90's. Said to just keep a close watch and bring her back if concerned! I am concerned!!! I think they sent her home too soon, as was the case with the previous three discharges!! I am so frustrated and uggghhhh I feel absolutely helpless as my lil girl struggles to breathe. PLEASE HELP!!!

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Asked by kiddosX8 at 8:41 PM on Dec. 23, 2010 in Kids' Health

Level 7 (182 Credits)
Answers (5)
  • i think u need to has the pulse montior on her. if it has an alarm that ull hear then have her wear it. my daughter was born with sleep apena and for the first 3 months of her life hubby and i switch off sleeping so we would be able to revivie her. once she got the monitor it helped alot. it sounded when she stopped breathing and her heart acted funny. at 5 months she had to be in the hospital and i noticed her heart did werid things there and her pulse ox was in the 80 without ox and even with it went to 85. so ask the doc about getting her a montior for herself and maybe some oxygen for at home u can use while she sleeps. good luck. also always get a second or third opioion if need be

    Answer by knagsmom at 10:14 PM on Dec. 23, 2010

  • my daughter (who is now 2) was diagnosed with the same issues when she was 3 months old, and we also dealt with being discharged multiple times before we felt she was doing okay. The doctors would tell us "her numbers are ok, so give it time and she will grow out of it" They told us that if they felt the need they would do laser surgury to open the airway, but that they didn't want to be more invasive than they had to be (understandable, but they were not with her 24/7 as she's turning colors and not sleeping and not being able to nurse). Is laser surgury an option for your baby? If so, demand that it be done if you think she needs help. You are your baby's health expert, not the doctors.
    Turns out my baby was misdiagnosed and it wasn't until I demanded further testing that they found the real issue... another story.

    Answer by MommyJal at 11:45 PM on Dec. 23, 2010

  • My daughter has distal tracheomalacia (softening of the trachea all the way into the left main bronchus). Her malacia was so severe that she needed a tracheostomy. She had multiple blue spells a day when she was in the NICU (28 week preemie). I would ask your pediatrician for a referrel to a pulmonologist. Keep monitoring her sats and if they are in the 80's request home oxygen. Some Drs like to do a sleep study as well.

    Answer by azpreemiemom at 10:33 PM on Dec. 26, 2010

  • That sounds terrible.

    Answer by KTMOM at 12:05 PM on Dec. 27, 2010

  • I'm so sorry. Good Luck & I hope she gets better soooon!

    Answer by sstepph at 8:45 AM on Dec. 30, 2010

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