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Day 18 - Update

Monday, October 19, 2009

Wrong Baby
Dr. Guo recently called us to give us an update on Bennett.  She explained that an Ear, Nose and Throat (ENT) Doctor came to visit a baby next to Bennett the other day.  However, apparently, that baby wasn't there.  The ENT Doc wasn't paying attention and began examining Bennett instead (not realizing had the wrong baby).  So, Dr. Guo apologized for the mix up...But then, she went on to say that, incredibly, the ENT Doc ended up finding something.

Apparently, Bennett has tracheolmalasia. Tracheomalasia is a weakness and floppiness of the walls of the windpipe (trachea). Tracheomalasia in a newborn occurs when the cartilage in the windpipe has not developed properly. Instead of being rigid, the walls of the trachea are floppy. Because the windpipe is the main airway, this causes breathing difficulties.

So, Dr. Guo explained that we will now have to not only monitor his ability to breathe in his lungs but also his ability to breathe at the top of his windpipe.  She reassured us most babies grow out of this by age 2 (since the body will have developed properly by then).  But, she said we must be careful not to let him get too worked up when he's angry (as he won't be able to breathe).  We must also burp him more and sit him up more to help his little windpipe not close.

Ttracheomalasia is not related to Cystic Fibrosis.  However, Bennett's lungs were unable to grow to the full capacity they should have for a 38 week newborn since Bennett's colon perforated in the womb, causing meconium flow into his tummy and begin to take up valuable chest cavity space.  This is also the reason Dr. Guo believes Bennett's trachea didn't develop properly.

Our hope his that this tracheomalasia issue is fairly benign and we can simply watch it until his body develops the trachea area the way it should.  However, it makes us sad for our little man to have such a hard time breathing.  He has a double whammy with the CF and the tracheomalasia.

When Will Bennett Come Home?
Breck asked the Nurse Practitioner (NP) last night when she thought Bennett could come home if he continues to do well.  The NP hesitated to give a date (as has every other medical staff member that we've asked this question to) because the medical staff truly don't know.

However, Breck insisted with her question, "If Bennett showed signs of doing well every step of the way - with no hiccups at all - when would the earliest be that Bennett could come home...based on your experience with a baby in his situation?" 

The NP finally said, "I wouldn't get my heart set on anything earlier than 2 weeks...and that would only be if everything went perfect...it will probably take longer than that."

The bottom line is there are alot of people who will need to "ok" Bennett to go home at some point - Respiratory Therapists, Surgeons, Neonatologists, etc.  The things we are waiting on are for Bennett's GI track to work correctly, for Bennett to be nursing well and for him to be gaining weight appropriately.  In the next weeks, Bennett will continue to be weighed daily as he is weaned for the IV nutrients and fed solely milk.

2 Responses to “Day 18 - Update”

  1. Breck-

    Hi, my name is Scott Collins. I was a year behind you at KOMU. Lauren Bacon told me about this blog.

    I'm writing to you because I have a nephew with CF. I wanted to offer you any support you might need.

    I've had a chance to read some of the entries here, and I'm glad to see that Bennett is doing better. He was born with difficulties that my nephew did not have, and I truly cannot imagine what you have been dealing with. Just know that there is hope. My nephew, Aidan, is now 6-years-old and a rambunctious 1st grader.

    After Aidan's diagnosis, I became very involved with the Cystic Fibrosis Foundation. Its fundraising efforts and research efforts are very encouraging. I know you are dealing with a million things right now, but when life calms down a little you should contact your local chapter. The staff members there can likely be an incredible source of support. Plus, being involved offers you an opportunity to fight this disease yourself.

    I will be checking back here for more updates. If I can be of any help to you, contact me.
    My email address is iamscottcollins@gmail.com

    ReplyDelete
  2. What a blessing that doctor made a mistake. I'm sure it is incredibly helpful to have this additional info.

    ReplyDelete

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