Wednesday, October 20, 2010
This picture was taken shortly after Ari was taken to the Pediatric Intensive Care Unit. Ari and I (Travis) had been alone for several days. Haley was back home in St. George because she was due any day to have our new baby. After the third day my mother came up to be with me. It really takes two people to care of Ari. Ari loves to be held by her mom so much and if Haley is not available then I will have to do. So one job is for one to hold her 24 hours a day and the other is what I call the Gofor.... Go for this and Go for that. They are both challenging roles I have played both roles many times. When you are the Gofor you not only have to take care of all of Ari's demands but you have to take care of Haley's as well because, Ari will not let Haley or me leave her. I have to agree with Haley, when you are laying there holding Ari her strong loving spirit feels mine it is a divine experience to be able to hold such a precious being. Here is the story behind this picture, Ari's condition is very volatile especially at this time it was not unusual for her to taste death 1 to 3 times a day. Let me explain, Ari's heart rate had rose to 228 beats per minute (very very high for a two year old) her fever was remaining between 101 and 104 constantly and she was requiring blood transfusions every 12 to 36 hours. Her poor body was plagued with not only the LCH Disease and Diabetes Insidious (DI) but she was also fighting EBV Virus, Strep, Herpes and Staff infection. With no Immune system those infections and viruses will kill her and killing her they were. The EBV Virus and the LCH was eating up all of her blood. Those viruses and and infections alone are painful. But also the LCH and DI can be an excruciating pain. My cousin died of Colon Cancer at the age of 52 almost two years ago, he explained the pain was like no other pain he had experienced he said it went all the way through the bones. Ari's blood pressure had been dropping rapidly so she was transferred to PICU. On the way to PICU she was saying something I could not understand her. We had to go from the 4th floor to the 2nd floor. She continued to be saying something and I kept asking her what she wanted. I said " I am so sorry honey I don't understand you!" Keep in mind right before we left the 4th floor to PICU her blood pressure was 46/14 yes that is correct. They had to put four additional IV's in her besides the port access she already had which at the time was receiving blood and trying to find her veins is a nightmare. Seriously, to me it feels like I am witnessing some sort of evil torturing while probing and stabbing. She was going in and out consciously and unconscious. However she continued to be mumbling words and I felt so bad that I could not understand her. Finally I heard her say in her cute little 2 yr old weak voice with the little baby two year old accent say "Name Jesus Christ Amen." She wasn't asking for anything from me or even trying to tell me anything she was praying. I wish I knew what she was saying, my heart wonders what a little girl in that condition and situation will ask God for? I was sure that she was not going to survive and my heart was fearing making that phone call to Haley but, she made it again. This picture was taken two to three days after, my mother and I stood there watching her sleep. The feelings of watching your 2 yr old daughter come so close to death in such a painful manner and then be able to witness her sleeping so peaceful is a joyous occasion.