Caleb underwent his tenth procedure/surgery on March 17th. An Auditory Brainstem Response (ABR) test concluded that his hearing in both ears is good. We learned that Caleb's eardrum is not completely formed, but this is not impacting him at the moment. They will continue to monitor and determine if tubes or surgery is needed in the future. We knew Caleb could hear since he typically reacts to noises and sounds (especially the barking dogs); however, after many unsuccessful hearing tests it was imperative that we determine if he has suffered any hearing loss. Thankfully, we got a good report!
The procedure also included an evaluation of his bilateral ears and removal of cerumen (earwax), removal of suprastomal granuloma tissue, microlaryngoscopy and bronchoscopy. A microlaryngoscopy and bronchoscopy was necessary to make certain Caleb's entire airway (from nasopharynx down to lungs) is adequately open and unobstructed. The suprastomal granuloma tissue that was removed was partially obstructing his airway, which would make it difficult for him to breathe without the tracheostomy. This procedure has been done twice already and may be needed a few more times before they can even think about decanulating. We will follow-up with Caleb's ENT in May, but we are hoping to begin capping trials to ensure that Caleb can clear his own airway effectively without the need for suctioning and to make sure there is no swelling, stricture, or obstruction of his upper airway. Decannulation may take longer for Caleb because he is still requiring oxygen and he has very little lung reserve (his saturations drop immediately upon removing his flow of oxygen). He just needs to continue to grow and in time, the hope is that his lungs will get bigger and stronger. Although life at home would be much easier without a tracheostomy, there is no rush and removing it too early could be detrimental to Caleb.
Caleb was admitted into Johns Hopkins Hospital for one night following his surgery and was back to his happy and smiling self in no time. Once again, we are amazed by his resilience.
We have big plans for Caleb in the upcoming months. Our goal is to get him transitioned to full feeds into his stomach that will be compressed throughout the day, begin the capping process for his trach, make changes to a few medications, monitor his present hernia, and focus on his therapy and development. Although his retinopathy of prematurity was resolved through the laser eye surgery, nystagmus and mild nearsightedness has lead to some visual impairment, so we will learn in May if Caleb will further emphasize his cuteness with glasses!
The procedure also included an evaluation of his bilateral ears and removal of cerumen (earwax), removal of suprastomal granuloma tissue, microlaryngoscopy and bronchoscopy. A microlaryngoscopy and bronchoscopy was necessary to make certain Caleb's entire airway (from nasopharynx down to lungs) is adequately open and unobstructed. The suprastomal granuloma tissue that was removed was partially obstructing his airway, which would make it difficult for him to breathe without the tracheostomy. This procedure has been done twice already and may be needed a few more times before they can even think about decanulating. We will follow-up with Caleb's ENT in May, but we are hoping to begin capping trials to ensure that Caleb can clear his own airway effectively without the need for suctioning and to make sure there is no swelling, stricture, or obstruction of his upper airway. Decannulation may take longer for Caleb because he is still requiring oxygen and he has very little lung reserve (his saturations drop immediately upon removing his flow of oxygen). He just needs to continue to grow and in time, the hope is that his lungs will get bigger and stronger. Although life at home would be much easier without a tracheostomy, there is no rush and removing it too early could be detrimental to Caleb.
Caleb was admitted into Johns Hopkins Hospital for one night following his surgery and was back to his happy and smiling self in no time. Once again, we are amazed by his resilience.
We have big plans for Caleb in the upcoming months. Our goal is to get him transitioned to full feeds into his stomach that will be compressed throughout the day, begin the capping process for his trach, make changes to a few medications, monitor his present hernia, and focus on his therapy and development. Although his retinopathy of prematurity was resolved through the laser eye surgery, nystagmus and mild nearsightedness has lead to some visual impairment, so we will learn in May if Caleb will further emphasize his cuteness with glasses!
 | Playing before surgery... |  |
 |  Recovering in the PICU |  |
Ready to GO HOME!
