Henry is a little boy that loves Adele and Train. He love to hear his teachers sing and he loves the voices of his family.
Henry was born with a blood clot in his umbilical cord.
Brain damage, global and extreme brain damage, caused a series of medical issues.
Henry can not see well. He has Cortical Vision Impairment. He can't see more than 8 inches away. When he does see, it's like seeing through Swiss cheese that keeps moving.
Henry does not walk. Henry does not hold himself up. Henry does not have control of his limbs. He has 'good' head control and can sometimes trigger a big button that plays Adele, with his head.
Henry does not eat. He has a 'lazy' epiglottis. Anything in the back of his throat or on the back of his tongue will trigger vomiting. Sometimes vomiting will continue for hours after the initial stimulus.
Henry has a Gtube.
Henry has granulated tissue around the stoma.
Henry gets infections a lot.
Henry has developed allergies to penicillin and sulfa drugs.
Henry has a form of staph infection. (MRSA) It's treated with penicillin and sulfa drugs, in children under 8 years of age. Tetracycline can cure the infection - but in children under 8 - it will alter the color of their teeth. Grey or black or a variation of grays and black stripes could be the result. Vancomycin is the last drug option. It requires a procedure called a picc line in a hospital setting. Vancomycin could cause kidney damage. It could also cause deafness.
Henry loves music, hearing his family and listening to The Price Is Right. We can not take his music away.
There is no guarantee that the infection will go away. Or that it will stay away if it is successfully cured. He could develop allergies to these super strong antibiotics, and we could be right were we are, six months from now - with a deaf child that has black teeth!
So, Henry is being made comfortable in Hospice. We are holding each other. Holding Henry.
