Andrew's Hope: What were you thinking?!?

Tuesday, March 30, 2010

What were you thinking?!?

What was I thinking?? That was what was going through my head at 9:00 A.M. Monday morning. Andrew was going in for the placement of his feeding tube. I carried him down to the surgical suite, and watched as my precious baby boy drifted off to sleep when they placed the mask over his face. There was no fight, no complaints, just Andrew's little tongue licking the mask as he drifted off to sleep. I kissed him and told him I would see him soon and left to go to the waiting area. Allen and I were there together, waiting with increasing anxiousness for his return. Twenty minutes later the doctor came to tell us that all had gone well. His tube was placed successfully and we could go in to see him. He was just waking up and was coughing and choking on his own saliva. As my heart was breaking, the nurse in me wanted to yell, "Suction him NOW!" I didn't need to say anything, they did exactly what they were supposed to do and soon Andrew stopped coughing and could breathe. He sat on that big bed and looked like a little drunken sailor. He needed a lot of help just to sit up. As I sat in the rocking chair and rocked him, he continued to sleep. When he finally woke up we were able to go to the room where he would spend the night. It was after 2 P.M. by the time he was able to eat and use the feeding tube. His feedings went well and he had no problems. He was, however, a very uncomfortable little boy. He slept a lot and got Tylenol every 4 hours. I stayed with Andrew and Allen went home for the night. Andrew was awake a lot during the night; at least once every hour! Promptly at 7 A.M. his doctor came in to see him and that was the start of a very busy day of training for the feeding tube. They knew I was a nurse and still the training took all day! Now he is finally home and Jessica was so excited to see him. A big kiss and a small hug because she knew his belly was sore. She then told me, " Mom be careful of that tube.If you pull it, it could hurt Andrew." Wow, a nurse in the making! Keep Andrew in your thoughts and prayers and we will do our best to keep everyone updated.

1 comment:

High school is just a part of everyday lifeApril 4, 2010 at 8:46 PM
Jessica is going to be a great sister! She already is! she loves Andrew so much and will do anything to make sure that he is okay! I am very thankful to have met such a great family like you all, and I hope everything with Andrew continues to get better!
-Dianah
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About Andrew

Andrew is a very handsome wonderful 6 year old boy. He gives us so much joy to have him in our life and, just like any parents, we want to do everything we can to make his life better.

Andrew has bilateral hearing loss and a difficult to control seizure disorder. Andrew also has a visual processing disorder which essentially makes him "blind". While he can visualize objects, he can not process and identify what he is seeing. On top of this, Andrew also has a swallowing disorder which makes it necessary for specialized feeding.

The seizures Andrew has been diagnosed with have also included Infantile Spasms, which is a very serious diagnosis in a child. Due to the severity and frequency of Andrew's seizures, he is termed as "Global Delay" because of the interruption they cause in his daily learning and processing of information. This is despite of being on multiple medications and therapies.

At 3 years of age, Andrew took his first steps. We are still waiting for the day he says his first word. Andrew has come a long ways in the last 3 years. Having Carina enhance her training to include tethering will be wonderful for Andrew. We have fought long and hard to get him walking, including fighting the school when they wanted to put him in a wheelchair. Andrew should be indepdendent as safely possible and noone should ever hold him back.

Carina has improved Andrew's long term quality of life by alerting and providing comfort before, during and after seizures. She can also help to be Andrew's eyes and ears and provide a much needed source of support and comfort to him as he meets the upcoming challenges in his life. We heard about a great organization that places highly trained dogs.

4 Paws for Ability is a non-profit organization dedicated to helping children and adults with disabilities. The dogs are specially chosen and trained specific to each individual's needs. Our previous fundraising was on behalf of 4 Paws For Ability in order to minimize the wait time and allow us to participate in the process of placing a dog with Andrew.

Why 4 Paws For Ability?

4 Paws For Ability specializes in training service dogs for children with special needs and has a very high success rate. We encourage you to visit their site at http://www.4pawsforability.org/ to learn more about this wonderful organization. 4 Paws For Ability is a 501(C) Non-Profit Agency and all donations are tax deductible. 4 Paws for Ability's mission is to "Enrich the lives of people with disabilities by the training and placement of service dogs to provide individuals with companionship and promote independent living." and "Assist with animal rescue whenever possible by obtaining many of our animals from shelters and rescue groups." Through a family friend, we heard of another family currently undergoing the training and placement process of a seizure response dog for their 4 year old daughter Caitlin. 4 Paws For Ability is very highly recommended and has placed over 500 service dogs!