Jimmy Logan Barnes
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Jimmy Logan was born on 9/30/99 after a normal pregnancy with no complications. He was delivered by c-section and weight 5.5lbs. Everything looked good. At his four month check-up, in January 2000, his pediatrician noticed that he seemed to be laying crooked. He sent us for an x-ray and diagnosed him with scoliosis and sent him to a specialist at the University of Virginia Hospital. We saw the specialist who didn't think it was too bad, said that the bones in his spine were formed correctly, but set him up for an MRI and sent us to a developmental pediatrician. We saw the developmental pediatrician at the beginning of March 2000 and he did a evaluation and said he thought he had Spinal Bifida. During his evaluation he used a pointed object and stuck it in his legs and feet with no response from Jimmy. At this point he was 5 1/2 mo and unable to roll over or sit up unassisted. We had the MRI done and two days later they called to say that he didn't have Spina Bifida. The following day, he was with the babysitter at Wal-Mart when he started having a hard time breathing and they called 911. My husband and I caught up with him at the hospital and the doctors thought he had a seizure and decided to send him to the University of Virginia hospital in Charlottesville, VA , about an hour away.
At UVA, they did numerous tests, spinal taps, EKG, EMG, Cat Scan, blood work, muscle and nerve biopsies. After three days at the main hospital they sent him to the Kluge Children's Rehab Hospital (KCRC) in Charlottesville. The day we arrived there the doctors came in and told us that he was mal-nourished and would need to insert a NG tube and that he had Charcot Marie Tooth disease and did not expect him to live but a few months. Needless to say my husband and I were devastated. A week after his admission we were discharged home with a NG tube to await the final results of the muscle and nerve biopsies.
We came home on a Saturday, by Monday he started having problems breathing, so we took him to our pediatrician, who freaked out, and called for the ambulance and back to the ER then back to UVA. At KCRC they put him on oxygen which seemed to help his breathing. They finally got the results from the biopsies and said that he didn't have Charcot Marie Tooth but that he had Spinal Muscular Atrophy and that he still did not have long to live. All of these diagnoses were always told to us with the addition of we are not for sure. About a week later he really started having difficulty breathing, they checked is CO2 level and it was 150 (normal should be 30-40.) The doctor said that I had a choice, leave him at KCRC to die, or transfer him to the PICU and he would be intubated. There was no choice. They were not sure of the diagnosis, take him and keep him alive.
In the PICU where he was now 6 1/2 months old they had him intubated and heavily sedated. At this point even without the sedation he had little strength in his arms or legs, his breathing problems were due to his right diaphragm becoming paralyzed. In order to finalize their diagnosis of SMA they did a test on his DNA. While waiting for that test, a neurologist came in to see us, and said that there was a long shot, but he thought that he might have something called Guillian Barre Syndrome. He said that he had some of the symptoms of GBS but it was a long shot because he was so young. Usually seen in adults. Usually caused by the body attacking itself instead of the invading bacteria. This strips the myelin sheath of the nerve which causes messages not to reach the muscle correctly. While waiting for the DNA test he suggested trying him on treatment for GBS which was some stuff called IVIG. All the other doctors that were treating Jimmy Logan held no faith whatsoever in what the neurologist was saying. Their main focus was trying to prepare us for his death, which they felt was imminent. Towards the end of that month after receiving some of the IVIG, the neurologist was finally able to get his reflexes that had been absent for sometime. Still the other doctors were convinced that he still had SMA.
We had a meeting with all the doctors who thought it would be best if they would give him a trach and a g-tube, in order to get everything off his face and get him off the sedation so we could spend to quality time with him before he died. After that meeting the DNA tests finally came in and it 100% ruled out SMA. That was the best possible day of my life. YEAH!!!!!! That following week he received his trach and g-tube and then was sent back to KCRC.
At KCRC they finally weaned him off all the sedation and it was so nice to have our Jimmy Logan back. While at KCRC he started receiving OT, PT Speech and school. They made him in a chair so we could put him in an upright position. We spent 3 months at the rehab center with daily therapy sessions and another round of IVIG. During our whole stay there and even till the present the only doctor that is sure this is GBS is the neurologist the other doctors respect his diagnosis but don't buy into it a whole lot, and not just the doctors and therapist were like this as well. This really made it difficult on us as we were so relieved that it was something he would recover from. We finally secured nursing and went home on the 25th of July, four months to the day when he was admitted.
We came home with nursing 5x days a week for eight hours. One thing the 3 months in rehab had done for us, is by the time he was discharged my husband and I were providing all his care and feeling very comfortable with it. At present Jimmy is still on the ventilator. He is on a rate of 20 when he is sleeping and on pressure support when awake. He came home on pressure support of 18 we are now currently down to 12. He has returned to KCRC every six weeks for two bottles of IVIG. The last time we went he had no more veins for IV access so they inserted a central line. He has had progress in other areas as well. He now tolerates sitting upright for longer period of times. He has more strength in his legs and arms. He can entertain himself with toys (yeah!!!) He loves playing with balloons and LOVES TO PULL HAIR. He continues to fed by his g-tube though recently has started to take small tastes by mouth, though he still has a strong oral aversion. Within the past month he has begun to make noises around his trach, no specific words just AGH!!! , but I love to just hear his voice after such a long time.
For all that Jimmy Logan has been through he still remains a very happy baby.
Update, January 2003:
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A lot has happened since I last posted Jimmy's experience. In April of 2002 they changed Jimmy's diagnosis to Infantile Axonal Neuropathy. It still doesn't tell us a whole lot or what the future might hold for Jimmy so we keep our hopes high that he will improve. Jimmy still has his trach and is vent dependent. He still is unable to sit independently or walk though has learned to roll over by himself.
Jimmy started pre-school this past September and loves it. We have seen a lot of improvement in the area of communication. He is vocalizing more with and without the Passy-Muir valve and he also knows some sign language. His oral aversion is getting a lot better. He now seems to always have something in his mouth, either his fingers or his shirt sleeve so we are making improvement in the right direction. He has also started to take more food by mouth but still gets his nutrition from the g-tube. He recently got a wheelchair that has helps us get him around a little easier. One of our biggest worries with Jimmy going to school was the increased chance of him getting sick, but halfway through the year he has yet to have even a runny nose (knock on wood).
This next year we are looking at Jimmy possibly having surgery on his scoliosis. They are planning on using the type of rods that will still allow him to grow while correcting the curve. I've talked with several families who were really pleased with the outcome of their child's surgery, several reported improvement with their child's respiratory status so that is definitely a plus for Jimmy.
Jimmy is very much the 3 yr old these days and I long for the day that Jimmy can tell me exactly what he is thinking. He is into the Wiggles these days and if left up to him would watch them all day long. Its good for him though as he does his best to dance along with them.
Anne Barnes: SIXFTALL2@aol.com
