Maxwell Cole Weinhouse
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Our son, Maxwell Cole was born on February 26, 2003 - three days late - weighing in at 8lb 5oz. Everything seemed perfect. On February 27, my mom noticed that Max made a strange sound when he cried. Although I explained that the pediatrician had examined Max and indicated that everything was fine, my mother was not convinced and called for a nurse to look at Max. Within minutes, Max was rushed down to the NICU. The next morning the pediatric ENT, Dr. Michael Rothschild, examined Max and determined that the stridor (the weird noise) was caused by bilateral vocal cord paralysis. Max's vocal cords were paralyzed in the closed position. This caused him to have serious trouble breathing. Dr. Rothschild recommended that he perform a tracheostomy to stabilize Max's airway. Although my husband and I were scared and confused, we trusted Dr. Rothschild and listened to his advice. Dr. Rothschild performed a tracheostomy on Max when he was only two days old.
The next few days were an absolute blur. As first time parents, the shock of going from having a perfectly healthy child to a child with a critical airway was overwhelming. How were we ever going to take care of him? How would we ever hear him? How will all of the equipment and nurses fit in our tiny one bedroom apartment? How will I ever go back to work? One of the most frustrating aspects was that the doctors did not know why this was happening. They explained that sometimes BVP is caused from some underlying neurological disorder and sometimes it isidiopathic meaning that they don't know why it happens. We were also told that sometimes the paralysis resolves itself as mysteriously as it appears. We hoped and prayed that Max's case was idiopathic and that it would resolve itself in the near future.
Once we got over the initial shock, my husband Brett and I soon learned how to take care of Max and the trach. Suctioning, a task which at first seemed completely overwhelming, became as normal as burping Max. One bit of advice, take things slowly and at your own pace. Mount Sinai
Hospital wanted to discharge Max and I wasn't ready to bring him home alone. (We were still in the process of fighting with our insurance company about paying for nurses at night). We ended up bringing Max to Blythedale Children's Hospital in Westchester County. Although Blythedale was still a hospital, it was much more "family friendly" then the NICU. Blythedale helped remove a lot of our fear about taking care of Max. Another piece of advice: don't search the internet for answers (although if you are reading this blurb you probably have already searched the internet a couple of times). There is a lot of scary stuff out there. When friends would ask us how they could help, we would ask them to research for us. They would filter the information for us and provide us with positive stories and protect us from depressing ones. Spend your time falling in love with your child and not on "what ifs".
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We brought Max home on April 1 and brought him to see Dr. Rothschild later that week. Miraculously, one of Max' vocal cords had begun moving. We had been told not to expect anything for six months and here one of Max' vocal cords was moving after only six weeks!!!! Two weeks later, Dr. Rothschild removed the trach. Max is a happy and healthy little boy with a scare on his neck which I hope will always remind him of how strong and brave he was.
Deena and Brett
deenaandbrett@earthlink.net
