Prayers for sweet little Charlotte. May the forces of the universe continue to keep her well, may her ancestors convene on her behalf, and guardians continue to be of comfort to her. May peace, love and warmth be with you and her father. Ase!
I usually don't pray but I will definitely for you and your baby !! So sorry you are both going through is. I will keep you in my thoughts, hoping for positive updates !
Thanks for all the prayers!! We just excavated the breathing tube!! As we've explained our story of GERD and choking, and of Friday afternoon, the conclusion has become that we have a problem. Finally doctors who didn't blow it off as just reflux. We are told Charlotte had everyone fooled by thriving and gaining weight, but it appears that we have some kind of breathing problem related to abnormally severe reflux-they said that's what they are thinking at the moment. Whether that is something such as scar tissue build up in her trachea or a VERY loose sphincter or something else, we are going to get to the bottom of this problem the doctor said. We aren't feeding with a bottle until tomorrow, once we meet with speech to figure out what is going on with her tongue, sucking, and swallowing. ENT should be in tomorrow to scope her as well. We've got a possibly long road doctors said, but we aren't leaving until we have an answer and they are confident we won't have another apparent life threatening event-ALTE they call it! We've had too many in the last 3 months!! My baby girl is in my arms sleeping away at the moment and that is all that matters for now. I'll resume stress and worry in the morning! Lol! Thanks for everyone's continued prayers and support! Charlotte, her dad, and I thank you!!
I'm glad you've got doctors who are getting to the bottom of the problem. My thoughts are with you and your little one.
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.
We are waiting on speech ENT this afternoon. Nothing new to report yet, but Charlotte did have a few minor reflux choking episodes this morning that the nurse saw-so when ENT came for a sec to get a look(scope this afternoon), the nurse could explain some things that she saw!!
Thank you for the update. Hope you get good results and answers soon. Also good thing the nurse saw so they can get a better understanding of what's going on. Thinking of you and Charlotte.
Another ALTE yesterday. Today we are doing swallow test and camera scope to check her throat for malformation somewhere or developmental problems with swallowing. Also checking vocal chord reactions. Tomorrow we go to OR for lower endoscopy. Please keep Charlotte in your prayers. Thank you for all the support.
OR tomorrow for more intensive scope. Scope today showed aspiration while eating. Also exhibiting signs of Sandifers Syndrome and calcium is 1.7-too high. More labs drawn today to find out why calcium is so high. Again, thanks for continued prayers everyone.
I've been away from the Bump for the last 4 days, and just saw this now...how scary! I'm so glad you have doctors who are taking your concerns seriously this time, and that they are already making progress on finding the answers! I will be keeping both you and your poor sweet Charlotte in my thoughts and prayers. *hugs*
Her airway is narrow under her vocal chords, but they've seen this before, and it should grow as she grows. Could create a higher occurrence of croup-then it will need to be looked into further. Endocrinology is trying to figure out why the high calcium. GI will meet with her tomorrow to decide whether another scope is needed to examine her sphincter muscle because it may need wrapped and tightened. And to establish a plan for her severe GERD and/or Sandifers syndrome as was mentioned. Currently she is eating only 2 ounces every 1.5 to 2 hours with an acid blocker and PPI. We are aware and careful of her aspirating during feedings. Speech will probably be involved to help fix the swallowing problem in regards to aspirating.
Glad to know you are get some answers and a plan going forward. Still praying for Charlotte. Thanks for the updates. I was worried about your little girl.
Haven't had a chance to post here yet, but I've been checking in to read your updates. What a scary thing to happen! I'm so glad you're getting answers and a plan quickly. Sending good vibes to little Charlotte, and to momma for getting through this!
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.
I am glad that you at least have a better way for Charlotte to eat. We are continuing to pray, and hopefully the doctors will come up with solutions quickly! Creepy internet hugs and lots of them!!
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.
Glad you have your diagnosis. Sounds like you've got a great medical team.
So it looks like a definite NG tube. Upper GI today just to make sure intestines aren't twisted before starting feeding tube. Feeling good that we have a solution for her. No, I don't want a feeding tube in her for 4-8 weeks, but it'll keep her from aspirating on her reflux (which is VERY important) and stop the refluxing. Then, we work with speech to fix her swallowing skills in the meantime. Now the problem remains, why the high calcium. A kidney/calcium expert will be in to see her today. Her kidneys looked great on the ultrasound yesterday. But he's known for his expertise on calcium. It's scaring me that it's not something easily diagnosed-hyperparathyroidism. They keep checking hormones and levels for that, but it's not making sense. I know I can't think this way, but I had to write it somewhere since I can't say it out loud and it's unlikely, but if it's so hard to pinpoint where the high calcium is coming from, it's starting to feel like there's a chance she has cancer because it's also a rare cause of hypercalcemia. Anyway, I'm trying to stay positive, but we've been drawing for calcium for days now and no explanation. Plus, her blood is now clotting and they can't get enough blood for the calcium draw today.(also a side effect of high calcium). Just wanted to get that out somewhere. Thanks for listening. We could really still use lots of prayers!!
Re: Prayers Please
Thinking of you and Charlotte.
Thanks for the updates. I was worried about your little girl.