Thank you all the continued prayers. Finally some diagnosis, but no solutions yet, except a new way to feed Charlotte. She has tracheomalacia (that's what happened Friday, her trachea collapsed), subglottic stenosis, apnea, GERD and exhibits signs of Sandifers Syndrome, and hypercalcemia. Meeting with ENT again and GI today.
My son had GERD and tracheomalacia when he was younger. He outgrew it around 4 yrs old.
Hugs. You're being incredibly strong. I'm so sorry for what you and your little girl are going through.
If there's something strange underneath the hood. Who you gonna call? Your Doctor. If there's something weird and it don't look good. Who you gonna call? Your Doctor. Immediately. If it's new, painful, and possibly pregnancy related get your ass off the internet and call your doctor. It's for your health and your child's.
Hoping Charlotte is feeling better and sending hugs your way. Glad they've been able to diagnose most of the issues. I can only imagine how worried you are but try to stay positive! I know easier said than done. You're a strong momma!
I will be praying for your little one. My heart breaks to see and hear that she's had it so tough! I pray for the doctors to give their best treatment and healing to your baby Charlotte and for answers to be found. Continued strength for you, mama...and rest, comfort knowing that you and Charlotte are in good hands!
I can't thank everyone enough for all the prayers!! We were discharged last night at 1030, with an NG feeding tube. Now, in addition to our pediatrician, we see a GI doctor, a neurologist for dystonia(even though he thinks she's just a really strong baby, he wants to double check), a speech therapist to teach her how to swallow and not aspirate, and a kidney doctor because iCal is still high, no one can figure it out, with weekly lab draws now as outpatient until they can figure out what's causing the hypercalcemia. Again, thank you so much. We've got a long road ahead, but hey, we are home! I'm thankful for that! I'm also thankful that on that Friday afternoon, weeks ago, we made it to the ER in time. Thanks ladies for all the thoughts, prayers, and continued support!
I'm so glad to hear that she's stabilized enough for you to take her home. That's wonderful. Your strong little girl takes after her mama. Good luck.
If there's something strange underneath the hood. Who you gonna call? Your Doctor. If there's something weird and it don't look good. Who you gonna call? Your Doctor. Immediately. If it's new, painful, and possibly pregnancy related get your ass off the internet and call your doctor. It's for your health and your child's.
Hooray, you're home! I'm so happy to hear that! I hope everything continues to improve, and that they are able to figure out what's causing the hypercalcemia soon!
So glad you're home! I'm sure that your stress levels have lowered so much! It sounds like you've got a great plan and good doctors going forward. We will continue to pray for you!
She was still refluxing the ounce of food in her belly and then aspirating it back down. Guess she can't have food in her tummy right now. NJ was just placed-goes through tummy into small intestine, so now there's no food to reflux! Fingers crossed!! Now speech to teach her how to eat, so she stops aspirating!!!
Hi! Thanks for asking! We've been through 3 NJ tubes-she keeps pulling them out. Then we have to go back downtown and stay at hospital overnight getting fluids before the next tube is dropped. So, this time we got a bridal put on it; this way she can't pull it out. However, it's painful when it gets tugged :-(. Just met again with GI. Since she's still aspirating on her saliva, the NJ tubes stays(we can't chance her refluxing and aspirating and her trachea collapsing again). We sleep in her room every night with two bulb suctions waiting and listening all night for when she aspirates on her saliva. Then we jump into action lol! It's not every night we have to use them, sometimes she coughs a little and recovers. We found out she has a milk allergy, which could of been a contributing factor to the severe GERD. We now use an amino acid formula and it is awesome! We see GI again when she's 6 months to reevaluate. Kidney Doctor won't see us until Sept, so new pediatrician got us an appt with an Endocrinologist. She is WONDERFUL! She just ran blood tests and urine tests-depending on results we are checking for FHH, hyperparathyroidism, or cancer. I'm so happy she's helping us find answers! We meet with speech once NJ becomes NG. Our follow up with neurology is in May for dystonia, but they feel she's pretty normal-just strong. Currently we have an eye infection from a cold. She can't clear the mucus due to the tube, so it secretes from her eyes. And that's all!!! Just waiting patiently for answers. Overall calcium jumped up to 11.8 with ionized calcium still high as well. On a positive note, we are reassured often that she looks like a healthy baby! Oh and she LOVES swimming! This is Charlotte rocking the NJ tube in the pool!!
Thanks everyone for your thoughts and prayers! :-)
@DogLoverX3 I PMed you about Laryngomalacia. I hope you have had a diagnosis since then, but who knows ! ! She seems to be doing great from what I see on the forum
Thank you!! I'll take a look! We just got her tube out!!! And a calcium specialist in Philadelphia thinks the hypercalcemia is due to a rare gene mutation of the calcium sensor receptor gene(which means it wouldn't be a tumor or cancer!!)? She's getting gene tested next week!
Re: Prayers Please
My son had GERD and tracheomalacia when he was younger. He outgrew it around 4 yrs old.
Continued prayers for you guys! Sweet Charlotte is a strong girl just like her momma!
We're having twins
Our angel baby boy is looking over his twin sister - due November 21
Thanks everyone for your thoughts and prayers! :-)
I PMed you about Laryngomalacia. I hope you have had a diagnosis since then, but who knows ! ! She seems to be doing great from what I see on the forum
Human sons: 11/2015 & 05/2017
*formerly kayemjay*