Over the next three months Harrison was transferred from UTMB in Galveston, TX to Texas Children’s Hospital in Houston, TX and finally to Joe DiMaggio Children’s Hospital in Hollywood, FL. He was put through every test possible, he had a surgery to install a g-tube so he could be feed without a feeding tube and he had a band wrapped around his stomach so he would not refulx fluid into his lungs.<\/p>\n

We had the best insurance available to us when Harrison was born and it did a wonderful job caring for him during his stay and transfer between the three hospitals. But when he came home we were give 30 days of 8 hour nursing care at our home. Basically enough time for us to sleep 6 hours with one eye open & listening to the beeps and sounds of the monitors in case we had to rush in an help the nurses.<\/p>\n

We trained the nurses, we taught them how to care for Harrison. They had never seen or cared for a baby like Harrison. Some got freaked out and never came back. Others saw his beauty and loved him like their own. All in all the nurses did their best and we were grateful for their support, but after 30 days our insurance said no more and we were left on our own to provide life sustaining care for Harrison 24 hours a day 7 days a week.<\/p>\n

We had a blow up mattress that we would inflate each night and either Melissa or I would sleep by his bed awaiting the sound of the monitor that would tell us to suction Harrison’s airway so he could breath and continue living. If we failed to clear his airway he would begin to turn blue and things would get bad.<\/p>\n

Medicaid Takes 45 days<\/h3>\n

Due to his fragile condition we were taking Harrison to a doctor’s visit almost every day of the week. Taking Harrison to the doctor meant loading up the oxygen tank, suctioning machine, monitors and all the other normal babies supplies and driving him in our mini van with one person driving while the other sat in the back monitoring his oxygen and suctioning him as necessary. These trips were mentally and physically exhausting for all three of us. It was hell.<\/p>\n

During this 4 month journey with Harrison we had lost all of our savings and were obviously not able to work. The only income we had was the donations of family, friends and strangers. With no income and a child with critical needs we were approved for Medicaid, but the catch was there was a 45 day wait period, no exceptions.<\/p>\n

We Did Not Have 45 Days<\/h3>\n

On April 4th 2011 after a couple days of being ill and sleeping almost all day Harrison’s heart rate elevated and within a couple hours he died in my arms in our home. Melissa had been up with him most of the night and all morning trying to get his heart rate down. After a couple hours of frustration and with no nurse in the house to help she handed Harrison to me and within a couple seconds he stopped breathing. It was like he did not want to die in her arms and cause her that pain.<\/p>\n

We frantically gave him CPR, called 911 and had him rushed to the hospital that was 1\/2 mile from our house. They worked on him and within an hour the doctor told us there was nothing they could do. Harrison was gone.<\/p>\n