Benny Update

Benny Update -

Good Morning ,

So, here we are at the Maria Fereri Children’s Hospital at Westchester Medical Center in Vahalla, NY. This is day 2 and it is comforting to be here. First of all, the facility is quite amazing. It is a free standing state of the art building dedicated to pediatric specialties, built exclusive for children. Everyone who works here has chosen a career that is devoted to clinical care for children. And it is family centered which truly does recognize Beth’s relationship as a partner with the Doctors and Nurses in caring for Benny and finding answers thru testing and research. They welcome all family members and provide services for siblings of the patient – Sahna has a ball when she comes here. They strive to make the situation for Benny as stress free as possible and will do whatever they can to make the situation more comfortable for him. Benny is in an area called “heroes” which is devoted to children with respiratory issues.

OK, what’s happening with Benny? First of all, the reason he is here to begin with is because he continues to struggle with his breathing and his oxygen levels; mucousy stuff in his lungs and his cough. And they were at a crisis point on Saturday night. The signs are manifested by his obvious “retractions” in his chest when he breathes. The retractions are his muscles behind his rib cage working harder to push air in and out of his lungs. What they are looking for is the reason for the retractions. In the meantime, it needs to be managed and when Benny has more difficulty because of the buildup of “stuff” in his lungs, he needs help. He needs more oxygen, and sometimes more fluids. It obviously takes more energy to breathe which requires more calories. He is a good nurser and has a happy personality. He smiles for everyone and likes the attention. Of course, he rather not have the oxygen in his nose, or the iv in his foot.

Today, he is having an upper GI series which is non-invasive. They have him swallow some sweet stuff and then do a series of x-rays. Beth is with him for the procedure. Hopefully, they will have the results later and it will show if there is any leakage to places which it shouldn’t be, such as his lungs. It also looks at acid reflux. And the next consult is with the Pediatric Metabolic Specialist looking at blood gases and other metabolism issues.

So, as not to minimize the severity of the situation, the possibility exists that Benny will just need help from time to time with managing his chronic bronchial issues, and will move on in time from the situation. He may be prone to bronchial problems as he grows up. They need to first eliminate all possibilities of a more serious diagnosis before he is discharged, so I am assuming he will be here for quite a few days.

Beth is totally focused on his care and I am proud of her. I know she will do whatever it takes, and ask a million questions, many of which do have not answers. Once again, everyone here is a Pediatric Specialist and it would be pointless to even have an x-ray done by someone who is not familiar with reading an xray of a 5 month old.
Ben’s parents have been the main support system. Beth is fortunate to have them. And I just want to mention that Beth is insanely busy managing Benny’s care and it is hard for here to even take a phone call.

Love,

Jeanne