Helping to raise awareness for Neurofibromatosis in Loving Memory of Will

Will was diagnosed with nf type one when he was about three months month. Doctors told us he had abnormally developed blood vessels which caused the growths that he had and also he would get better with time, before they "offically" diagnosed him with nf. We got upset because the doctors didnt tell us what they really thought it was because it is so rare to be born with it to the severity he had it. Before he was diagnosed he was failure to thrive and wouldnt gain weight, it would literally take hours to get 1-2oz of food in him then he would throw up. His doctor told us that the growth on his neck had nothing to do with his eating; I completly diagreed. Finally, he was admitted to have a g-tube placed (at 3 months old), they ended up placing him the in PICU because after surgery he couldn't keep his stats up. They watched him over night he he coded all through the night. The next morning, they decided to do an emergency trach. They told he he would still be able to vocalize. Surgery went well, but he was in pain and we couldn't here him cry. That broke my heart considering they said he still would be able to vocalize not that he had to LEARN to vocalize again. He was then transported to another hospital to have a de-bulking surgery done not even a week later so this would be surgery nimber 3 in less then a week. Ten hours later he arrived back to his room he was fine, they kept him on a ventalator while he recovered. About a week after that he was off the ventalator but still needed oxygen. He was then transported to a rehab center so I could learn to care for him and bring him home. I learned CPR which might I add every parent should know, how to can his trach, feeding tube, how to work the medical equipment, and how to suction out his trach. After a month of surgeries, rehab and training he was FINALLY able to come home. We were so happy. He did have home health care come out monthly to get supplies and check his equipment. He had a pulse-ox, oxygen, back-up oxygen tank, and a feeding pump. We had a few bouts where he needed to go back to the hospital because he ended up coding a few times at home thank God for the training. Finally, he got off his oxygen and started breathing on his own. And he didnt have to be on a 24hr feed, just at night because for some reason he would get sick if he ate during the day. He then got off his pulse-ox moniter at night because he was doing so well. Also he couldn't talk vocally but he said everything with his eyes, and he couldn't crawl or roll over but he would scoot along the floor to move around. Then on October 14th 2009 about an hour after I put him to bed I went to check on him, he rolled over on his trach and was white as a sheet. I immediately started working on him and so did my boyfriend.He got to the hospital and he put on a ventilator, put it was to late he was brain dead loss of oxygen to the brain. He passed away the following day Ocotber 15th 2009 at 3pm.

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