Update! False Alarm!

Ugh!  Why do people change plans?  Just stick with the plan folks.  My schedule is clear, I'm ready to go and now this.  Surprise!  It's all for the best, really.  Just me and my color coded outlook scheduled life trying to keep all the balls in the air.  

Lydia will only be having the ear tube procedure next week. 

Due to the color of Lydia's mucus today, yes, the color of her mucus, we are postponing the soft cleft palate repair.  When the nurse and I tackled Lydia on the table 3 different times over the course of 3.5 hours and her plastic surgeon and anesthesiologist depressed her little tongue, 1 out of 3 times he saw not clear mucus.  He also made her little mouth bleed once and didn't even comment on it.  Whatever, I'm working on getting over it.  The palate repair is obviously right back there in her little mouth with all the mucus and drainage and spit, so we don't want to risk any infection lingering back there.  

Due to the 5-10 oz weight loss Lydia had over the the last 2.5 weeks, we are also postponing the soft cleft palate repair.  Lydia had a respiratory bug the weekend of the 11th, had increased secretions and a cough that all contributed to her vomiting, so we switched to Pedialyte for the weekend.  It took a few days for her to be back on her normal calorie blended diet.  She also grew 3/4 of an inch and is way more active these days.  We'll meet with our dietitian next week to see about changing her diet and chunking her up for surgery.  We just want Lydia to be healthy and on an upward weight gain curve since this surgery is guaranteed to come with a little weight loss.  When you are only 20-21 pounds to begin with, half a pound makes a difference - just think about when you pick out your Thanksgiving turkey, 1 pound matters.

On Tuesday, December 6th Lydia will be outpatient for the ear tube procedure.  We'll be home the same day.  We can continue signing, doing oral tastes and trying thickened liquids, all things that would be off limits for a few weeks due to arm boards, or no-nos as the surgeon refers to them, with the palate repair.  Yay!  No arm boards or grumpy toddlers for Christmas!

Surgery is set for December 6th

Wednesday, November 30^th

Pre-Op Appointments

Tuesday, December 6th

Ear tubes

Bifid Uvula repair

Soft Cleft Palate repair

The ear tube procedure is out-patient but the palate repair is in-patient, 2 to 3 day stay.  

This will help with her communication and speech, as well as eating orally, eventually.

She’s going to be restricted for about 3 to 4 weeks while her mouth heals…which means she’s going to be a grump!  She’ll have to wear arm boards so that she can’t put things or her fingers in her mouth.  I don’t think that’s on the list of things that make toddlers happy.  

Turkey, Taters and Cranberries, Oh My!

We visited all the people!

We ate all the things!

We played hard and celebrated!

Sunday the 20th, the Riggs family celebrated Thanksgiving at Nana and Papa's house.  We took some cousin pictures and Lydia was hamming it up big time.  Like I said Sunday, if these pictures don't turn out it wasn't Lydia's fault!  Dinner was great...the sweet potato casserole with a pretzel and cranberry topping that Emilie makes was awesome!  

Wednesday the 23rd, we packed up the truck with all of Lydia's equipment and supplies and headed down I-70 for St. Charles and the Krupich Thanksgiving.  This is the first time we've taken Lydia on a road trip and we didn't forget a thing.  Jen and Brian hosted a delicious Thanksgiving dinner.  Jen made everything and the girls helped out with the potato mashing and stuffing mixing!  All four girls had a great time playing together and really tired Lydia out.

  

 

 

Friday, November 25th, we celebrated Jillian's 2nd birthday with a Doc McStuffins party!  Jen's family met Lydia for the first time since she was born, so that was special for us all.  12 adults and 5 kids made for a house full of energy and happiness!

 

  

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.

  

  

This is Halloween!