Much has improved! Her lungs are clear and she was doing so well on the thickened formula, we were able to remove the ng tube before going home!!!

Although we were cleared to go home, we have a long road ahead. We have follow up appointments with ENT, Pulmonology, Aerodigestive and GI. Making the appts was quite overwhelming knowing I’m going to have to take off work for all of them. Charliee’s surgery is scheduled for Friday, January 13th as long as she stays healthy. We are still keeping her home from daycare for close to a month so her little lungs can heal and will obviously need to be extremely careful for who comes around us. She will continue to get neb treatments and we have been prescribed albuterol prn. If she happens to catch a cold, we’ve been instructed to start that right away to help prevent another hospital visit. 

Charliee is now unable to sleep or lay flat due to her aspirating and severe reflux. We were sent home with a wedge to put under a crib mattress and then we will attach a Danny sling. A Danny sling is a carrier that will attach to the mattress and allows her to sleep at a 45 degree angle. She gets all strapped in so it’s safe and secure. 

I want to thank everyone who has prayed, offered words of support and donated to Charliee’s Go Fund me page or sent donations via Venmo. To say it means the world to me is putting it lightly. These last 2 weeks were the absolute hardest hurdles I’ve ever faced as a parent. I’ve never felt more vulnerable and hopeless during these last weeks but praying and knowing we were being prayed for was what got me through! I hope that we never have to go through this again. If we do, all the doctors have been absolutely amazing at preparing us with precautions we can take and a go-to plan to start shall she get sick again. I plan on keeping everything up so I can continue to update family and friends as our journey is still not over. 

We are over the move excited to finally be home. At last.  🤍