Lydia's Latest Medical Updates

Cardiology: 

Dr. Shah was "quite pleased with how Lydia has done after her heart surgeries and her repair looks really good right now."  Yes!  Lydia's heart is functioning normally with no significant outflow obstruction on either side.  This is what her last surgery fixed.  She has a slight tricuspid valve regurgitation, but we all do, that's normal.  Her aortic arch repair is functioning well and is slightly large for her heart size, "however this may be helpful as she will grow into her aortic size" and may not need further surgeries.  She is not on any cardiac medications and she should not have any limitations from the heart standpoint at this point. 

 

Endocrine: 

Everything looks good from the gland and hormone standpoint. Dr. Wan's words, "Lydia is clinically euthyroid and without symptoms of hypocalcemia."  Her weight gain and linear growth are reassuring.  Lydia is only in the 3rd percentile for height and that was a flag, not a red flag, just something to watch.  If Lydia drops below that we'll do some testing.  As I stood there, all 5'3" of me, towering over the probably 5'0" doctor, I asked, "do you think she just might be short?  There isn't a blood relative female in her family over 5'4", well maybe 1."  Yeah, that's what I'm thinking. 

Ear, Nose, Throat:

Lydia's tracheostomy looks good and we've had no problems.  We are not going to begin the decannulation process until after her palate repair.  We're hoping late spring or early summer 2017.  She's wearing her PMV about 2-4 hours a day and we've stopped capping but will start again when the PMV is up to 4-6 hours a day.

Lydia has been experiencing moderate-mild hearing loss and November's test reconfirmed the results from the July audiogram.  Dr. Arganbright strongly recommends ear tube placement and we were sold when she mentioned it could help with her speech and communication.  Dr. Arganbright wants to do this by the end of the year and would like to combo with the palate repair Dr. Goldstein will be performing.  We'll find out this Friday if we are going to do the combo surgery or just the ear tubes in December.  

   

Immunology:

Blood counts are normal, CD3 and CD4 levels have come up significantly but she continues to have a low CD8 count, which is the T cells. Lydia was at 113 June and is now at 185, but she needs to be at 300 to get live vaccines. We're going to repeat the tests in 6 months. For now we have to continue to avoid all live vaccines, MMR and Varicella, and continue to have blood product precautions.

Gastroenterology: 

Lydia maintains her diagnosis of GERD and feeding intolerance which is why she takes Prevacid daily and eats so slowly. She has done well with the blended diet and is rarely vomiting since the introduction of fruits, vegetables and grains in her blend. Dr. Cocjin was impressed with the blend and asked us many questions about the specifics of what we are doing.  He was impressed and is studying blended diets and the bacteria growth in the GI tract with blended vs. formula based diets.  Our Infant Toddler Services Dietitian is famous, as her name and methods are very well known to Dr. Cocjin.  

What's next?

We have a Cleft Palate Clinic appointment with Dr. Goldstein and Speech Therapy on Friday to determine when we will do the repair.  

We have a Special Care Clinic appointment on Friday to receive the first of five RSV shots this cold and flu season.

We have a consultation with Mo, our favorite CMH OT, next Wednesday to do a liquid evaluation.  This will determine if it's safe Lydia to start trying to take liquids by mouth, that's called drinking in my world.

We will schedule the ear tubes placement procedure in December and maybe the palate repair too.