Victor's Journey: From the PICU to Intermediate Care

Saturday, December 20, 2008

From the PICU to Intermediate Care

Little Victor is recovering little by little. He is now at intermediate care, which is just a step down from the PICU. When he first got off the ventilator yesterday afternoon he was groggy, cranky, and quite swollen. He wasn't wanting to eat so he was given a special formula through a feeding tube, a small yellow tube that goes through his nose into his small intestine. He perked up in the evening, but ended up not having a good night. He was up quite a bit, either because of diarrhea or because of having his lungs suctioned with a catheter placed down his throat. Paul stayed with him through the night and Theresa took over at 6am.

Today he's been able to drink some apple juice and eat some soy yogurt, which should help him quite a bit with all the intestinal problems caused by the medication and feeding tube. He is also coughing more on his own but his oxygenation level is still low, so he's been placed back on oxygen. His doctors are now looking to figure out why he had those mucus plugs or casts in his lungs in the first place. We'll update the blog with this information as soon as some more light is shed on this issue. Victor is currently taking a much needed nap. Let's hope he wakes up ready to breath and cough more in his own.

Thanks to everyone for keeping track of little Victor's progress and for all the words of encouragement. It really means a lot to us.

Our Vision

We wish to develop a large community of friends around Victor who:

Allow themselves to be filled with the joy that Victor stirs within people who get to know him for whom he really is: a happy child rejoicing in the smallest things of life, reminding everyone to live for the moment,
Accept the differences brought by people and children with special needs as an integral part of society,
Understand the challenges people and children like Victor face and are willing to be advocates for their needs, and
Want to help make a difference in other people's lives by sponsoring research into rare diseases like Pitt Hopkins syndrome.

Victor's Story

This is Victor, our precious son. Our names are Theresa and Paul. Victor was born in August of 2005. He has a deletion of Chromosome 18q 21.2 – 21.32 / Pitt-Hopkins Syndrome. We also have two wonderful older girls who are typically developing. Our family lives in North Carolina, USA.

Victor is a very happy child, who loves to meet and interact with everyone–a true extrovert. He has dysphagia, which is a swallowing disorder, and has to have his liquids thickened to a honey consistency. Victor has asthma and has been hospitalized many times due to viral respiratory infections. He also has severe food allergies to nuts, dairy, eggs, and kiwi. Victor sometimes holds his breath for a few seconds when he doesn’t seem to be feeling well or is very tired. Victor has developmental disabilities. He rolled over at 9-10 months, sat at 11 months, crawled/bunny hopped at 14 months, stood alone at almost 2 years old, took his first steps at 2, and began walking independently at about 2 1/2 years old. He wears custom orthotic inserts in his shoes to provide proper alignment and added support when walking. He has a little bit of an ataxic gait pattern, and needs help with curbs and stairs.

Victor is very curious, and investigates all things in his environment. His receptive language is much more advanced than his expressive language —he can understand much of what you say to him, but currently is not speaking yet. Pointing has helped Victor tremendously to let us know what he wants and to make choices, and he is beginning to use some signs, putting 2-3 signs together at a time. He also uses a communication app developed by his Daddy for the iPhone/iPad, called Verbal Victor, with much success! We help him learn new things through prompting, repetition, and redirection. Victor loves listening to music, looking at books, playing with tops, watching favorite videos, using the iPad, playing outside, swinging, kicking a soccer ball, going down a slide, pedaling his tricycle and many other things–he enjoys everything that life has to offer! He is a joy and an inspiration to us all!