James Fanning
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Our son James was born on 4-11-97 weighing one pound twelve ounces at 24 weeks gestation. I was not anticipating such an early arrival so with the onset of severe cramps I went to our local hospital thinking that I was having an appendix or some other kind of attack, never in my wildest dreams did I think it was full blown labor, I actually had an abruption but did not know it at the time. Luckily for me, and thank GOD, there was an OB resident in the trauma room who did an ultrasound and determined that there was a placenta abruption and the baby was breech. At that point they called over to the Women and Infants hospital next door, flew me threw the tunnel where James was born by emergency c-section. His APGAR were very low, but he was alive!!!!
He spent the next weeks on and off the critical list in the NICU. He had quite a bumpy journey with several intubations, which is believed to have contributed to the damage in his airway. He has subglottic stenosis and vocal cord paralysis, that is why he has his trach. He was trached at 81 days of life after many failed extubations. He puzzled the doctors in the NICU since his O2 sats were great, they did not realize that he had an obstruction in his airway. His first bronchoscopy revealed just swelling in his airway. The course of treatment initially was to continue a round of steroids then to extibate him within 5 days. That very night he self-extibated and desated so low (as usual) it scared even his regular nurse. The very next day I called the otolaryngologist that did his bronch and told her that something was desperately wrong with my baby. At that point she said the only thing she could do was a tracheotomy and so our journey began. He was trached on 7-01-97, it was determined that the first bronch did not reveal the vocal cord paralysis because he was under general anesthesia and the doctor did not see it. His first year of life with his trach (or breathing necklace as we call it) was anything but smooth. He stopped breathing 5 times all due to his trach. A mucus pug, he had reflux it was determined and that he outgrew his trach to name a few things; James always had someone very competent (a nurse or family member) so if an emergency occurred someone could help him long before 911 arrived. It proved to be a life saver that we as his family insisted (as well as his doctors) that nursing coverage be a major part of James care. Whoever takes care of James must know how to change his trach, ambu and do CPR or they cannot care for him. It may sound pretty intense but we have grown very used to the nurses--they have become a huge part of James life as well as ours--that help care for him. I decided the day he came home that this journey of life is his and we are along for the ride. I welcome the nurses in our home as if they were family, often sharing meals and putting on a pot of coffee for the night nurses. In return, the people that come to our house are so happy to be here, filling the schedule is usually not a problem unless someone calls out sick at the last minute.
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James is now close to five years old and we are finally at the point of doing reconstructive surgery. He has had surgery on his vocal cord and is going in on 4-3-02 to do the other side. He is having part of his vocal cord removed to create a safe airway, all the while staying trached. He will need additional surgery on his airway at a later date. He has just begun to speak (with only a whisper and mouths words) until now he used sign language to communicate, the computer and a letter board. He is very resourceful at getting his point across. Other then his trach James is age appropriate in all other areas of his life. He started pre-school this year (he has a nurse attend school with him) and is much like the other children except for his breathing necklace and MR. Thirsty (his suction machine as we call it). All in all his trach has become just apart of who his is. He is a wonderful gift from God, like all children. We have always told him how special he is and that just because the person looks different we are all the same inside. He is pretty unfazed about his trach. When his little sister Sophia was born a year ago he was looking for her necklace. He was pretty happy that he was the only one in the house with one. The only time it ever becomes an issue is swimming. But we visit the ocean often and just take a kiddie size pool with us. He enjoys the sun, sand and water since that has always been a big part of his family's life. We just leave the ocean to the fish. We will continue on like we always do with God's good graces and lots of prayers.
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James 4 1/2 with his sister Sophia
Update July, 2002 - Hi,
Well we definitely have had much easier hospital stays. James had his
surgery and all went well until we were going home. In post op he had a bad
nose bleed and started bleeding from his trach then proceeded to vomit
blood, they assured us that that sometimes happens. After about a hour or so
all seemed well, bleeding had stopped, so we were discharged. We then went
to the CVS to fill our prescription and James began to have a trickle of
blood in his nose and trache, Jimmy was the one who felt we should go back
to the post-op to report what was going on before we began the drive home.
Upon our arrival James really began to bleed heavier, they rushed him in the
OR where they cauterized the area again. All seemed well until 2-3 hours
later when he began to bleed again. This time Dr. Healy came in himself, by
now it was 9:30 pm. He then took James back into the OR so he could put
packing at the site to stop the bleeding, then determine why it was
happening. AT MIDNIGHT HE FINALLY HAD IT UNDER CONTROL AND JAMES WAS
ADMITTED TO THE ICU. The findings for the prolonged bleeding were lack of
vitamin K in his diet, This type of incident usually only occurs with adenoid or tonsil
surgery (which would explain why James has never had any other
problems before with any other surgeries).
He received large doses of vitamin K and a drug called amcar to stop the bleeding. After 36 hours the packs were removed and he stayed in the ICU for another 24 hours for observation. All went well and we came home on Saturday. All this for adenoid removal, WOW. I am happy to report that it turned out well thanks to the quick thinking of the hospital staff and especially Dr Healy, He is a God send. What could have proved to be much worse turned out OK. Next step is the LTR surgery after he has a full blood work-up. (he had his blood work-up on the 29th of April, all is just as they thought, a vitamin K deficiency. Surgery is going to be on September 4th) Time for bed, I can't tell you how thrilled I am to just be home. It is so true there is no place like home. Thanks for all the thoughts and prayers, they really work as always they take care of James when he needs it most.
Peace and God Bless All
If I can offer an ear or answer any questions feel free to e-mail me at jkf18@cox.net
Sincerely, Ellen
