Kelli's Story
May 2007 - Sitting on your lap in the C position used to be very comfortable for Kelli before her feeding tube. Now, she would find comfort in very unusual and awkward positions on your lap such as straddling one of your legs with her body up against yours. Also, she really enjoyed movement like rocking, bouncing or patting her butt.
Kelli continued to struggle daily with very intense muscle spasms. Her entire body would stiffen and she would scream and cry. They were so intense that when she screamed she would also hold her breath.
There were only a few names of people that Kelli could now say and she could only answer yes and no questions. When she did answer, the wait time for each answer was very long. You could tell she was very frustrated as she tried to tell us things and was unable to.
We experimented with various medications and doses trying to find a level that would ease Kelli’s spasms and pain. She continued to take Prevacid and Neurontin. We increased the amount of Baclofen and put her back on Valium. She was taking Oxycodone for pain.
About a month after the feeding tube was inserted she seemed to be tolerating the feedings; however, we questioned whether there was something going on with her stomach that was causing her additional pain, we didn't know if it was gas, not being able to have a bowel movement, or something else. The doctors and nurses said that she should not be able to feel anything being put into her tube, yet she would scream and cry at times when medicines were injected. She also had scar tissue coming out of the tube site and had to have silver nitrate applied.
Kelli’s breathing became very abnormal. At times she seemed to take in very long breaths and hold them in. At other times, she breathed very hard and deep. There continued to be many times throughout the day where she went into a trance with her eyes. She would come out of them after a few seconds when we covered her eyes with our hands. It’s like she would snap out of it. At other times her eyes looked very glazed over.
Though each day was filled with pain for her little body, Kelli still managed to flash her beautiful smile to people and tried to communicate with her bright, blue eyes. She still cognitively understood everything we said and asked, even though everything was locked inside her little body unable to be expressed as it once was.
June 2007 - Finding a comfortable position for Kelli to sit on our lap became more and more of a challenge due to the extreme amount of pain that she was in at times. We were thrilled when she allowed us to sit her in her Tinkerbell Bean Bag (specially made for her by a friend) for short periods of time. Up until that point, only human laps were tolerable and acceptable to her.
We really had to be careful when positioning her in bed. She was developing pressure points and bed sores from no longer having the ability to move. Kelli continued to have muscle spasms, but it was incredibly difficult trying to determine whether the MLD was the cause or whether pain from the stomach or even anxiety caused them. We noticed that over the last few weeks, her legs were much more flexible, yet when she was in an incredible amount of pain, she would lock her upper body (arms bent tightly against her sides, elbows locked, hands locked in fist positions).
Kelli had stopped talking a few weeks earlier. She could not say anything at all. We continued to talk to her as we always had, knowing that she could still understand what we said but just couldn’t communicate back. She did try to smile with a tremendous amount of effort.
We continued to increase the Prevacid, Neurontin, Baclofen, and Valium. She was taking a tremendous amount of Oxycodone for pain, so we moved her to a Fentanyl Patch so that she could have a constant source of pain medication being pumped into her system. Even with all the medication, she continued to be in excruciating pain. There was no comforting her when she was like that. Unfortunately, it seemed that the only option was to sedate her with medication. This was absolutely heart wrenching for us to watch and live through each day! As a parent, you help your child as quickly as possible when they are experiencing pain. We felt helpless as her parents, watching her scream and cry day in and day out, knowing there was nothing we could do to protect and comfort her.
June 13th - Her button was put on. This was a little plastic attachment that stuck out of her stomach instead of a very long tube that was used for feedings and medications. I continued to feel that much of her pain seemed to be coming from her stomach, yet we were never able to determine that. We changed the formula that she received through her tube but it didn’t seem to make a difference. She began to have bowel movements on her own using the laxative, Miralax. The scar tissue around the tubing site had to be burned off three more times.
At times, Kelli continued to have very abnormal breathing. After a while it seemed to return to normal. Every now and then, her breathing would become extremely labored and we would get very concerned, but then we had to remind ourselves that breathing difficulties were associated with many of the medications she was taking.
One of her eyes began to randomly deviate outward and then return to its normal position. Kelli did a tremendous amount of drooling. We got a suction machine so that when she had a lot of mucous at the top of her throat (when she sounded congested or had difficulty swallowing and breathing) we would suction it out since she was unable to cough it up like normal.
Kelli was an incredible gift from God! We treasure each and every moment we had her with us here on this Earth! What this disease did to her was unbelievably cruel. It made each of us shudder when we looked back at how incredibly quickly Kelli lost each of her skills and abilities that she once had. I am unable to put into words how difficult it was to watch her suffer so much each day. Yet, somehow in the midst of all her pain, screaming and crying, and with a tremendous amount of effort, Kelli was able to smile and bring such joy to our hearts. She taught us many lessons on this journey: A smile is such a very simple gesture to give that is often times easily taken for granted; however, it can speak volumes to the one who is the receiver!