Grandpa Band's Request

My father indirectly pushed me to start a blog more to help other parents of children with special needs rather then to inform friends and family of Sam's progress. I feel both are important. And certainly if our stories can help or inspire anyone else then the time and efforts put into all of this will be worth it. My dad thought it was necessary to post Sam's history, so for those of you who already know this sorry for the monotony.

Sam was born at 37 wks gestation at St. Lukes Roosevelt hospital via vaginal delivery weighing 6lbs 13 oz. Prior to his birth I was diagnosed with polyhydromnios at approx 35 wks gestation (too much amniotic fluid). I was in labor for 2 ½ days when I spiked a fever and the Drs induced me to speed up the process just in case there was an infection in the uterus. When Samuel was born he received an apgar score of 9.9 by a totally incompetent pediatrician. My Gyn noticed Sam had a floppy neck. Once they put Sam on me I noticed that only the right side of his face was moving. I stimulated him for a root but got nothing. I also noticed the he was very gurgly, had a cat like cry and was bubbling from his mouth and had no suck, no cough and no gag. I obviously freaked out but they told me I was being paranoid and sent me to the maternity unit with my baby. Where I continued to tell everyone he was presenting like a stroke patient as he had limited movement on the left side of his body as well. Finally they took him to the NICU. He was seen that evening by Steven Wolf (Ped Neuro). MRI done the next day showed nothing too significant. NICU tried to feed Sam by mouth which I told them would be a HUGE mistake because he wasn’t managing his secretions so of course they did it anyway and developed an Aspiration pnuemonia needed C-pap and antibiotic. Sam was fed via OG for the 2 weeks we remained at St. Lukes. We left St. Lukes because the Surgeon wanted to do a G-tube with a fundo. I wanted to discuss further, he didn’t have time to discuss so I told them no thank you and went to Columbia P for the 1 million dollar work up and second opinions for feeding tube placement. At Col he was fed via NGT. To sum up Sam has multi cranial nerve involvement CN 7-12. It seems to be left sided only??? So deaf in L ear, some hearing loss in R ear, paralyzed L Vocal Cord, L facial paralysis (improving). Sam has been seen by genetics, 4 ENTs, 3 neurologists, 3 opthamologists, 2 pulmonologists, 1 GI, 1 Surgeon, and 2 physiatrists. At Columbia Sam had another MRI which showed 3 bi-lateral lesions between the Pons, Medulla, basal ganglia (brainstem). So basically where CN 7-10 originate. Genetic work-ups came back normal including extra molecular studies that were done to closely look at malformations in the DNA. The neurologists all seem to agree that some ischemic event took place during pregnancy that caused a lack of O2 flow which disrupted the formation of deep nuclei in the brainstem. All of our Drs. Were guardedly optimistic that Sam would regain most function back since the brain is so plastic and we already began to see some slow but steady progress. Our GI (Joseph Levy) did not want Sam to get the fundo so he suggested do a G-J tube. The Sx would not do a G-J tube at Columbia so we had to transfer Sam to NYU were he had one placed by Dr. Nadler. Before we left Col they did an esophagram which showed severe reflux. He also asp the barium do to yet another incompetent Dr. who refused to heed my warning and Sam ended up with another Asp PNA and we had to stay at col for an extra 10 days where he was treated with more antiobiotic and Cpap. At Col Sam received PT, OT, and feeding tx. Use of non-nutritive items only. We eventually were able to elicit a suck with prompting (stroking tongue and palate). Since Sam has had his Sx he regressed a little do to the anesthesia and contracting RSV. Sam still has difficulty managing his secretions. During waking hrs he needs to be suctioned frequently. He is on continuous feeds of 33ccs per hr via the G-J tube. Sam has made some gains. The facial paralysis seems to be improving, can produce a suck when prompted, moves left side better, has a strong voice, & has increased neck strength.

I actually wrote this right after Sam came home from the hospital in October. My pediatrician thought it would be a good idea for me to type up a history and hand it to any new Dr. Sam might see so that I would not have to relive our experience over and over again. God bless that man!

Things are very different for Sam now then they were 7 months ago. We know that Sam's hearing is normal, he does not need as much suctioning, his vocal cord paresis probably resolved as he has very strong vocal quality, his face is more symetrical, and his movements are much stronger. We still have a huge road ahead of us. There is so much we still do not know. But what we can tell you is that Sam has the BEST team ever!!! We are very lucky that all of his care givers are so dedicated and competent this of course includes all of his therapists, nurses and doctors. So we are just going to keep on keeping on and do the best we can.