Emma

Oh my sweet Emma Grace with the beautiful face!!  (Stole that from Nana)

UPDATE May 18th~


So frustrated....just typed a huge update and my computer crashed and lost it all...so please forgive me but this will be short and to the point. I will post more later if I can.


Finally Emma had her bronchoscopy today and Dr. Taylor thinks she finally has found something!!   Sadly more test are involved but Emma is so Brave I know she will do Great!


1st~ laryngeal cleft 
A swallow study should help determine if this is the problem and if she is aspirating on anything.   Depending on what they find from the Swallow study another scope may need to be done to see how large it is. Good news is that Dr. Taylor is thinking that is can be repaired with a gel foam.


2nd Tracheomalacia- 
Tracheomalacia occurs when the cartilage in the windpipe (trachea) has not developed properly. Instead of being rigid, the walls of the trachea are floppy. Something could be pushing on it and making it squished.  A CT scan with contrast will show more info about this. 


3rd~ air way clearance
Emma is going to start airway clearance with a device that she will get on Tuesday from Dr. Taylor. Really not sure how this will work but somehow it will loosen the mucus in her lungs and help bring it up. Guess I will find out more about this on Tuesday morning.




 This is all I know right now. These next tests should really show what is going on in more detail. At least we are getting closer to finding the answer!


Upcoming appointments


Please pray that we will continue to find answers for Emma and that the procedures will go smoothly! 
Thank you all so much for praying for Emma and our family. We are so thankful for you!


Monday at 9:00 ~CT Scan with contrast 
Tuesday  8:30 ~Pulmonary appt with Dr. Taylor
Tuesday 2:00 ~ Swallow Study















UPDATE on March 29th!
Yesterday, March 28  Emma had a  Pulmonary follow up appt.  Dr. Taylor has ruled out CF and Primary Ciliar Dyskinesia. The Sweat Test that she did last week was normal just like the first one so that is off the table! The Pediatricians office ordered  some blood work to test for some immune disorders. They will not be back for about  3 weeks. Emma amazes me!! She got right up there stretched  out her arm and watched as they stuck her! She did not even cry or flinch! She said it was no big deal and that it felt like nothing!  The only thing she complained about was the band aid right in the crease of her arm!

The next step now is for Emma to have a Bronchoscopy on April 29th. A Bronchoscopy is a procedure that uses a viewing tube to evaluate a patient's lungs and airways.  They will take samples of mucus or tissue from her lungs during the procedure to test in a lab. It will be outpatient but she will be put to sleep for the procedure.

So dates to know~ 
GI dr appt is on April 25th 8:30
Bronchoscopy is April 29th 9:30
Follow up appt with Pulmonary Dr May 24th at 8:30
Swallow Test May 24th at 2:00

Please keep Emma in your prayers....this is a bad season for her as well...Her asthma is always bad in the spring time when everything starts to bloom. She will have to stay well in order to do the Bronchoscopy that's why they are waiting 4 weeks to do it since she is still having some breathing issues right now.
Thank you all for asking about Emma and keeping her in your prayers.

Emma's Story
Many of you know that Emma has not be feeling well lately and that I have been really concerned about it. Finally after voicing my concerns to different doctors we were sent over to a Pulmonary Dr. I want this page to be a place where I can keep family and friends updated on her Appointments and things that we find out regarding Emma. 


Where do I begin really??   So much  to say but I have no idea where to start so I will just try to start at the beginning for as much as I can remember of it anyway!  here goes~   EMMA in a NUT Shell (sortof)

Emma has always been sick since she was a baby. At first she had reflux and tummy issues just like most babies do at that age....but then she had this strange seal like barky cough, so we went to an ENT when she was 9 months old and had a bronchoscopy done and it was determined that she had a smaller airway than normal. Strangely  after that the weird cough went away and I thought that would be the end of it. Then shortly after that she started having more asthma related issues...so  we were sent to Kansas City Allergy and Asthma...she had both Asthma and Allergies and  eczema which goes hand and hand with asthma... mainly seasonal allergies that would onset the asthma. From 1-2 years old she was really not too bad things were pretty much controlled from what I can remember with her breathing treatments but when she was 3 things started to change and she was getting sick more and more ofter. From October - February she had 3 chest x-rays all suspicious of pneumonia and she lived on orapred and the yucky white medicine that she can't stand for several months. They decided then that they should do a Sweat Chloride test. Which dumb me had no idea what THAT test was for and so I just said "ok " like it was no big deal until I got home and googled it! Then my world stopped.... The only reason a Sweat test is done is to determine if a child had CF "Cystic Fibrosis" yes that was a long week until we found out the results. The results of the test were negative and we were relieved and went on with our lives..  Finally we were able to get her on a good maintenance plan with her inhalers and keep everything for the most part under control until about a year ago. Since then she has been getting sick a lot more frequent. The last 6 months have not been good for Emma at all!  After many dr appts,urgent care visits and even a hospital stay finally the Doctors at KCAA listen to me and realized that maybe something else is going on...I spoke with another dr at the office that decided that we should see a Pulmonary Dr and see what they can find that they are not trained in. She has a lot of junk in her right lower lobe and he wanted Dr. Taylor to see her soon.  They also decided to do a Sinus CT scan to see if she had a sinus infection. She had not real symptoms but she did indeed have one. So the Biaxin ( aka white med) was extended from 15 days to 30 days. Which did not make Emma a very happy camper!!



Which leads us to now.... 

We were able to get right in to the  Pulmonary Dr at Children's Mercy on Monday March 14, 2011.
 The appointment went great and Dr. Taylor is a wonderful dr. she flat out said " We are going to be friends for awhile, it's going to take awhile to figure it out but we will....we have to find all the missing pieces to the puzzle" So that is GREAT news to me to know that she is going to do everything she can do to figure it out!
She is thinking that it is one of  3 things: CF ( borderline atypical...she really is thinking that this is unlikely but she is going to do another sweat test and see the results, if they are borderline she will send off for genetic testing. If you know me at all you know that I have spent many late nights researching all of this. I am not happy with all of the negative Sweat test that I have read from other people and that the only way they did find out was with genetic testing....so I will be asking Dr. Taylor if we can just do it, anyway this MOMMY needs absolute peace of mind so we can close that door and move on!

The other thing is Primary Ciliar Dyskinesia Or Reflux/aspiration~ she is thinking that it might be reflux/aspiration and that she is aspirating on something....the UGI and the Swallow test will help to determine if that might be the problem.

So the plan of action right now is the following:
Tuesday March  22 Emma will have a UGI at 9:30 and then the Sweat Chloride test at 11:00.  A follow up appt with Dr Taylor will be on Monday March 28th. She also has an OPM (Swallow test) set up for May 24th, this test should tell us if she is aspirating on anything.



This is all I know right now and it's a lot and at the same time it's really nothing. As all mom's know we want answers and the hard part is sitting back and waiting. I want to thank all of you for being so supportive and loving to our sweet Emma. She is a true blessing from God and we love her so much.  We are so blessed to have so many wonderful people in our lives that care about her too.  I miss seeing my sweet girl in her normal bubbly personality...lately she is very tired and worn out. She is on so much med that she just feels nauseas all the time and it makes her really tired.  Please pray with us as we continue this journey down the unknown... we need you right now more than you know.