*So as the list continues... In a previous blog I posted about her hypoparathyroidism, hypocalcemia, HDR Syndrome, 10p13 terminal deletion, PHO (hole in heart which has no symptoms- will not cause problems).. Now we add more promising answers----
*Emma's EEG did show slow brain waves so we know she will have some cognitive delays, the extent of that , only time will tell.
*However, The MRI provided us with minimal fear and some piece of mind... She does have excessive fluid, more fluid than there should be, however, as far as "is everything structurally there where it needs to be?" The answer is YES!!!!!!!!!!! So she has the 'hardware' but yet again this is a thing that only time will tell and she will have repeat MRI's every 6 months.
*Tracheomalacia is a condition in which the walls of the windpipe, called the trachea, are blocked or collapse because of weak or soft tissue. This causes breathing problems.
Tracheomalacia is most common in infants. Most of the time it is a congenital defect, which means she was born with this condition and it has just gradually worsened since birth. Symptoms of tracheomalacia include coarse, noisy breathing (strider), prolonged exhaling, and a croupy cough. These symptoms become worse during exertion, such as from crying, or when the child has a cold or respiratory infection. Symptoms can make feeding difficult.
*Laryngomalacia is a softening of the tissues of the larynx (voice box) above the vocal cords. This softening causes the tissues to become floppy, and they may fall over the airway opening and partially blocking the airway. Symptoms are usually present at birth but can easily be over looked. This is also something that in time should eventually strengthen itself and she should be able to strengthen the walls of her airway but the time she is around 20 months old things will hopefully be better for her. What this mean is? There is a long scary road ahead!
*Emma also has a "deformed" epiglottis. The epiglottis is the flap that covers the trachea during swallowing, so that food does not enter the lungs, The flap should appear flat to be working properly. Emma's epiglottis is floppy (weak) and curved.
Are you still with me??? :)
Now, to best answer the question you are all asking?.. What does this mean for Miss Emma?
More than likely after a week of observing Emma will have to have a tracheotomy. Since her breathing condition is something she will grow out of in time. She will more than likely need assistance for her first few years. This is a precaution! With that she may also have a G tube put into her stomach instead of the NG tube just as precautions right now. "Better to be safe than sorry right?!"
This has not yet been decided but has been talked about with her intensivists, lung specialist and her pediatric ENT (who would do the surgeries).
Life is really looking in a more positive way for Emma! God is the only answer to all her miracles! Let us praise him daily!
|Resting so peacefully after today's procedures. Welcome to our view from the PICU.|