any info on tracheal malasia would be loved.. - page 2

Have a lil gal who has BPD(I forget the spelling for I'm not going to try..has to do w/ the lungs) and tracheal malasia.. Was wanting to know if you all could help me find a good site for... Read More

  1. by   medicalert
    I have taken care of a five year old for two years that has bpd, tracheal stenosis and malacia ( floppy airway) she had her trach out a year ago and last year a tracheal rib cartalidge graft. ( they took a piece of her rib and tried to prop her trache open - for lack of a better way to say it. The surgery did not work at all. She goes every four weeks and has a tracheal dilitation ( bronchoscopy) to keep her airway open. She get svn txments alot during the day and has racemicepinephrine to use in case of emergency, What I have seen with her is she has the ability to shut off her own airway when upset or scared or just being a brat like when she doesnt want the nurse to leave. It is very scary but from what I have learned the is not much you can do to help it except supportive measures like breathing treatments and steriods and monitor close of s/s of any infection. She goes to Cooks Childrens hosp in Fort Worth Texas. She wears a pulse ox most off the day. Hope this helps
    Michelle from Texas
  2. by   eb_rn
    visit Arkansas Childrens hospital....lots of BPD/CLD kids with tracheomalacia......
  3. by   MeBLady
    Hi :-)

    I stumbled across this thread browsing this forum, as my daughter is preparing to enter a Nursing program.

    My son was born with TM in 1987, never known anyone else that had dealt with this. Even his pediatrician at the time had only read about it in medical books, never seen a case. We had little support, and lived in fear that my son would die at any time.

    He was diagnosed through an ENT by physical examination. Bronchioscopy wasn't considered for the fear it would cut off the airway, though he was given a full work up to eliminate the possiblity of another associated disorder.

    My son had a moderate to severe case. He had loud "stridor", even when sleeping-- I remember being comforted at night when hearing the noise, because it assured me he was still breathing. He also had chest retraction the size of a half dollar as he inhaled.

    Complications included two bouts with pnemonia before he was a year old among the many secondary infections brought on by the constant fluid the TM caused in his ears/nose/throat. Tubes in the ears didn't stop recurrent ear infections. He was extremely difficult to feed resulting in poor weight gain, but always came around and ate enough just about the time his doctors were comtemplating a G-tube. Every common cold had to be monitored, and he was hospitalized for every respiratory infection.

    His case took longer than anticipated to go away, though it did go away without intervention. He was officially released from the ENT just prior to the age of 4.

    He is now 16 years of age and has a clean bill of health. Respiratory infections disappeared when the TM did -- he eerily developed an iron clad immune system to a point that he gets only a runny nose every couple of years. He has a slight indentation in his chest left over from the disorder that is hardly noticeable, and an innocent heart murmer that was detected at birth.

    He is still extremely underweight for his height (5'7, 110 lbs.), but is beginning to fill out more as he progresses toward adulthood. It was told to us at the time that his "failure to thrive" as an infant was unrelated to the TM (there is a family history of picky eaters/scrawny frames on both sides)....I never felt comfortable that this was the case, though it was a symptom that didn't leave with the TM.
  4. by   cook202n
    My son was born with Tracheal Malasia, and he is two now and he just got his g-tube out, if you want to know what to do you need to see a doctor about it, it can be as small as just a noise but it can lead to something big, my son has already had 5 surg, and has been tube fed his whole life there is a lot that you can do about it, and the first step is to see an ENT ASAP!!!
    Because the more the child goes without the proper amnt of oxygen the more it is going to affect the brain, and you can tell by the noise that they make, it is the worst at night so you need to elevate the childs head. They also have a severe case of GERD so they need to be on Zantac or Losec, because they sometimes aspirate when they swallow or when it comes back up.
    If you have any questions you can PM me.
    Last edit by NotReady4PrimeTime on May 25, '08 : Reason: deleted personal email address per TOS
  5. by   Daughter_OF_A_KING!!
    I am speaking both from both experience as a nurse & a mother. I was working in Pediatric ICU & Newborn Nursery ,in addition to Cardiac ICU during the time I was pregnant with my son. When he was born, I would feed him & then when I laid him down, he would stop breathing. He was always fine sleeping upright in a swing, or being carried. But, every time I laid him down he would aspirate,sometimes 8-12 times in a 8 hr period. So, I learned to keep him upright always, and never lay him in a crib. He was always upright, and although he had that loud stridor, he was breathing fine. You see, the trachea is soft and not cartilaginous, so it is like an intestine,there is nothing to keep that child's food from returning from the stomach back through the esophagus and drowning these babies. My son's pediatrician, after a year and a half of struggling, moved into that Harlingen Pediatric Associates Practice. By the grace of GOD, he first saw my son, and instanly recognized tacheal malasia in my son, as his little daughter had it when she was little. It was something rare, to find a doctor with a child like that, and the support from that was incredible. What an empathetic & supportive resource of information for me. I was referred to Children's Driscoll Hospital, where ENT saw my son. He told me , how these children survive in the first year is incredible. They are released from the hospital with round the clock nursing care. Home health care nurses every 8 hrs, and the child is put on an apnea monitor and ekd monitoring. He asked me who helped you, I replied, me ,myself & I,& God that has helped me to do it. My three year old daughter would stand by his crib and tell me if he started to choke/vomit while I laid down for 5 to 10 minutes. It was like that for the entire first year of his life. My babysitter fed him, carried him and put him in a swing the entire time he was at her place, so he never stopped breathing on her at all. He grew in stamina and strength by the grace of GOD. No one believed me that my son is very sick.???:
    Last edit by NotReady4PrimeTime on Nov 29, '08 : Reason: removed personal email address per Terms of Service, and removed names of third parties, also per Terms of Service
  6. by   concerned lady
    Dear Tracheal Malasia Mother,

    I know of a mom in Boston, who could use some support from a doctor such as your pediatrician, who had personal experience with tracheal malasia. Can you email me your ped's name, so I could contact him and ask him if he could get into contact with this mother?
    I'm also going to give her a link to this website, so she can contact you and any of the others on this site, too!

    The mom in Boston has a child (3 y.o.) who was a preemie, was trached since age 1 month, was "decannulated" last summer, had "VCD" (vocal cord dysfunction/laryngospasms) only when crying, but has a cold now, and the "VCD" has progressed to every breath.

    Thank you and everyone else in this excellent "thread" (topic)!

    Carol (concerned lady)/former RN, former VCD/vocal cord dysfunction patient

    Last edit by NotReady4PrimeTime on Oct 29, '09 : Reason: removed personal email address and other personally identifying information per Terms of Service
  7. by   NRSKarenRN
    [color=#2200cc]aaron's tracheostomy page has the best resources and supportive message boards on subject.