Kelli's Story
On 6/22/07, Kelli was admitted to UVA hospital for pain management. While there for six days, the doctors were able to witness her having three different episodes of arching backwards and screaming from pain. They were able to help rule out different things by X-ray and ultrasound, but unfortunately were not able to figure out how to make Kelli completely comfortable. We initially went into the hospital thinking that her pain was coming from her G-tube or stomach discomfort. By the time we left, we felt that her pain and discomfort was coming from MLD and spasms. At this time, she began to take a low dose of Paxil for anxiety. During this hospital stay she began to let other people hold her; previously Kelli had not allowed this. Her bowel movements became regular and we stopped the Miralax. Slight amounts of bile were found in her gall bladder so she was started on Ursodiol. We began using Lorazepam (Ativan) for intense pain episodes.
Kelli was admitted to UVA hospital again from 7/28/07 - 8/2/07. She began vomiting throughout the day which prevented her from keeping her medications down. In the hospital she received meds and fluids through an IV. It was during this visit that she began using oxygen to help her breathe. This is when her doctors began to explain to us that it didn’t appear that she had very much time left.
August 2007 - Kelli appeared to be a little more relaxed. She continued to let others hold her at home and to be laid in her bed awake falling asleep on her own. We purchased a foam mattress topper and the hot spots of lying in one position too long went away. She continued to have muscle spasms, although they didn’t seem to be as frequent with the help of the additional medications. Although rare, Kelli tried to communicate with sighs, grunts and smiles.
She continued taking Prevacid, Neurontin, Baclofen and Valium. One Fentanyl Patch was no longer enough for pain, so we increased the dose to two patches. She was also on Paxil for anxiety and Clorazepate for anxiety and spasms. When the pain was intense, we alternated between Lorazepam and Oxycodone to try to make her more comfortable.
The feeding tube itself was working well and she continued to have regular bowel movements without Miralax. It was around July 4th that Kelli began throwing up occasionally, it soon became more frequent.
Kelli was still on oxygen. Her breathing was very abnormal and at times very loud and labored due to a combination of her medications as well as the disease. We don’t know how much Kelli could see at this point. Many times her eyes were not focused and she was not able to track an item. We continued to use the suction machine to help remove the excess mucous in her throat.
August 19th was a huge milestone for two reasons. First, Kelli celebrated her 3rd birthday! Praise God! Secondly, the doctors had not been optimistic that she would live to celebrate it. That day proved to be a major turning point in her condition. The suctioning was needed almost continuously. Even though she wanted to celebrate, it was obvious that her body was shutting down.
Kelli’s condition rapidly deteriorated. She often coughed and coughed and we would suction yucky stuff out of her mouth and even her little nose. She was extremely sedated, yet seemed so peaceful, which was a true blessing after all of the suffering she endured for so long. Her stomach was no longer tolerating her feedings, which caused additional pain. To help with that, we increased the dosage of one of her Fentanyl patches. Her breathing became extremely labored and irregular. The length between breaths became increasingly longer.
Each day, we sat watching her or holding her just waiting to see if the Lord was going to take her to be with Him. We were so very blessed to have her here with us for those very short three years. Although the time was brief, the Lord definitely used her to touch the lives of so many people.
On September 12, 2007, Kelli peacefully passed away while lying in her crib surrounded by her stuffed animals. She is now safe in the arms of Jesus!