Spencer's Fight for a Healthy Future

Hello! My name is Savana and my husband is Scott. We are the parents of 2 beautiful children; Skylin and Spencer. Spencer, our sweet baby boy, has had quite a rough start at life. My pregnancy was riddled with complications, and due to them, we welcomed him into the world early at 35 weeks on Sept 29, 2023 at 5lb 10oz. He spent 9 days in the NICU where he needed CPAP, Oxygen, TPN, tube feeds, and had to be in an incubator. He's been a fighter since the day he was born. We thought once we took him home, all the complications would be over, but we were way wrong. Spencer has a plethora of health issues. He had his first surgery at 7 weeks old, needed to have 3 hernias repaired. He has had a chronic wet cough since January, very slow weight gain, trouble eating, ear infections, respiratory infections, etc and we have been fighting tooth and nail for answers since. We are just now starting to get them and beginning the journey to getting him better! He had his second surgery on July 2nd. He had tubes placed due to severe chronic ear infections and had an airway scope done as well. The scope revealed far more going on than we thought it would and we are very worried and overwhelmed.

Current diagnoses are:

Aspiration Pneumonitis (has severe lung inflammation)

Asthma

GERD

Protracted Bacterial Bronchitis

Posterior Pharynx Cobblestoning

Aspiration

Oral Dysphagia

Pharyngeal Dysphagia

Esophageal Dysphagia (combined term for having these 3 is Oropharyngeal Dysphagia)

Oral Motor Hypotonia

Laryngomalacia

Laryngeal Cleft

Chronic Otitis Media

Tracheal Cobblestoning

Obstructive Sleep Apnea

Esophagitis

H Flu Pneumonia

He needs surgery for laryngomalacia and a laryngeal cleft, as well as possibly a gtube placement and tonsillectomy. We are waiting on final decisions for all the surgeries. He struggles severely with eating and keeps getting pneumonia from aspirating. He has oropharyngeal dysphagia and we were hoping for improvement in symptoms when we started him on thickened liquids, but sadly he is just getting worse. We are having to miss a lot of work to take care of our sweet boy. Besides taking care of him while he's sick (Bronchitis, pneumonia, and all the other illnesses the little ones pick up), he has a lot of upcoming medical needs. Currently he needs physical, occupational, and speech therapy. He sees Pulmonology, ENT, GI, the Aerodigestive Clinic, and his PCP, so very frequent doctor visits, as well as multiple upcoming surgeries which will require extended time off work, and diagnostic tests and studies. Despite all of this, he is such a sweet and loving little guy and we are so blessed to have him in our lives. My normal paychecks have been short 10+ hours consistently for months now, Scott is missing a couple hours of work most weeks as well and it's really becoming a struggle to make ends meet. We've been getting by for now, but any funds/savings we had, have quickly depleted and we are missing more and more work every week. Every week seems to bring a new diagnosis, new referrals, more appointments and tests. It has become very overwhelming emotionally and financially. We have already lost around $10,000 in wages this year caring for him, and that number is quickly growing. His upcoming surgeries are going to require one of us to take weeks off work at a time to care for him and we are not going to be able to afford our bills. We hate to ask for help, but we don't know what else to do at this point. Our baby boy needs us and we will do whatever it takes to get him healthy. We have a long and complicated road ahead of us. It is going to be difficult to navigate, but I am sure we will get through it eventually. We appreciate all the love and support we are constantly surrounded by!

Anything helps ❤️ Even if you can just share our story!

Thank you.