Logan Bodley
TrachKid Profile
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Logan Christopher Bodley's Story
At 36 weeks into my pregnancy the doctors thought my baby could be 10 lbs. Since I am 5' 3" and this was my first baby they decided it would be good to induce. So at 37 weeks they tried. Apparently the baby knew it wasn't time to come out so he didn't. After two days they offered the C-section and with some effort on 15 March 2002 out came Logan Christopher at 8 lbs 8 oz. He was a noisy breather from his first day, but the doctors said that this is not uncommon in babies. He cried for hours every day and the doctors said he had colic and would outgrow it by three months. Logan ate like a champ and had no problem gaining weight so the doctors didn't seemed concerned that he was very fussy. My husband and I were going crazy and just waiting for that three month point when this would get better. Just before three months, Logan seemed to be having trouble breathing. He wasn't just his usual noisy, he seemed to be struggling to breath. Of course it was 11 PM so we ended up at the ER where they said it was croup and did some breathing treatments and steroid injections and watched him for the night. He seemed better, but two days later we were back again. Again he was treated and seemed better. About three weeks later he was having troubles again. This time our wonderful pediatrician said "I don't think this is right for a baby this age" and sent us to see the ENT doctor. As much as we didn't want anything to be wrong with our baby we really hoped he would have an answer as to why he was so miserable. He was always sleepy during the day, but only slept 15-20 minutes at a time. He cried with a blood curdling scream for hours when he couldn't get to sleep. He would only fall asleep if we rocked him and if he woke up he had to be rocked back to sleep. At night he would sleep for an hour and then wake up and have to be rocked back to sleep. He would only sleep in his car seat in the bathroom with the fan on. Yes- we tried everything to make him sleep. Some times he went back to sleep in a few minutes and other times we were up for hours. Logan wasn't the only one who was miserable. We eagerly awaited our visit with the ENT doctor.
The doctor looked down Logan's throat with the laryngoscope and saw what he thought was a red mass just below his vocal cords. He said this was uncommon and wanted us to see a pediatric ENT (Dr Kanamori) who had more experience treating this. Dr, K said that he would need to take Logan to the OR to see the extent of the mass (called a subglottic hemangioma) and would likely treat it with laser and then watch him for a few days in the hospital. In some cases a tracheostomy was needed, but he would start with the more conservative approach of the laser. Unfortunately, the doctor was going on vacation the following week so we had to wait until he returned to have the procedure. On 30 July we took Logan in to the hospital. The doctor looked at him in the OR and discovered the hemangioma covered 60-70% of his airway. The laser was not an option as it could lead to scarring and permanent breathing problems. The trach was the best thing for Logan. It was heartbreaking to hear this, but we knew without it he may not be able to breath at all if the hemangioma grew. Logan was in the hospital for 15 days and we were so happy to have him home. It was very strange not to hear him cry. Over the past month he has learned to make lots of noises around the trach so we get to enjoy his baby noises. His behavior and sleeping were much better when we came home. He falls asleep on his own and sleeps much longer. He actually sleeps in his crib now. The past few days he has been acting more like the old Logan, so I am trying to see if there is anything more we can do for him.
Hemangiomas are common in babies; they are the red birthmarks that fade away as the baby grows. They typically grow between three and six months of age and then shrink beginning at about a year. They are not common in the airway, but when they are there they follow the same growth pattern and cause breathing problems. The doctor will evaluate Logan every three months and hopefully he will only have the trach until he is a year or so. Of course I'll try to keep this page updated and hope that our story helps other families the way that reading other families' stories has helped me.
Update, December 2002: Logan has had his trach for 5 months now. We finally got approved for some nursing hours (through a program called Katie Beckett - a special type of Medicaid for kids like Logan), so we hope that will get started soon. I have been working two days per week and we pay a nurse privately. Our nurse is absolutely wonderful with Logan and we are so happy she will continue to watch him once the hours are paid for by Medicaid. Logan was last scoped in October and the hemangioma had grown. This was not surprising since he got the trach at 4.5 months, right in the middle of the growth phase. He gets checked again in January 2003. We don't expect much change at that time since he will still be less than one year. We are still hoping for progress by Spring or Summer.
Aside from the trach, Logan is a wonderful healthy boy. He eats everything and pulls anything he can reach onto the floor. He has four teeth and a smile that dazzles all the girls. (He is a huge flirt even at this age. He won't smile at men, but as soon as he sees a woman-- watch out.) Yesterday we celebrated Logan's first Christmas. We all had a great time watching him tear into the paper. I'm not sure if he had more fun with the paper or the toys. Before the trach, I didn't think my sanity would make it until Christmas. It's hard to believe what a totally different baby we have. He is so happy and so much easier to care for (aside from the trach stuff, which is pretty much second nature at this point.) When I think of what could have happened to Logan without this trach (his airway was 90% blocked as of October) I am so thankful for the doctors who saved him. I am also thankful for all the other "trach moms" that have helped me through these past five months! I hope I can update some time with news of decannulation. Until then I'll keep enjoying my beautiful baby boy. Happy New Year to all!!
31 July 03 Update: Yesterday was one year since Logan got his trach. Today we took him to get scoped and the hemangioma now occludes 50% of his airway. This is down from 90% in October 02 and 75% in April 03. The doctor was very pleased with this progress and has decided to let him keep improving on his own rather than use the laser. Because he has made such great progress in the past few months, he thinks the hemangioma may shrink enough in the next few months to get rid of the trach without needing any laser treatment. While the laser may have sped things along a bit, it is not without risk. If there is not enough improvement without the laser, it can always be used later. For now we are optimistic with the improvements found today and the hope that he will get rid of the trach in a few months without the risks associated with the laser.As for life in general, Logan is now 16 months, 31" tall and 26 lbs. He runs around and climbs on everything. He makes tons of noise (even without the Passy-Muir, but much louder with it on) but not really much that resembles words. He can say Mama and is working on Dada. Even though he can't talk he understands a lot and helps clean up toys and brings you things when you ask. He understands "time for the bath" and runs his little naked buns to the bathroom (some day he'll scream at me for saying that.) Overall he is a very happy adorable little man. We've certainly had a challenging year, but I would not have dreamed a year ago that we would have made it this far or that I could possibly love Logan as much as I do. Pretty unbelievable what we are capable of! To all the other families, keep sharing your stories. I've met a lot of great people through this web site in the past year and can't imagine! not having all the info and support you all provide. I'll update again in a few months, hopefully with more good news.
Update June 2004: After Logan's last evaluation in November '03 he was a little less than 50% occluded. We anxiously awaited 30 March '04 when he would go in to be checked and hopefully be rid of the trach. During those months of waiting Logan pulled his trach out several times and seemed fine. Each time we put it back in without much trouble. On 24 March (a week before his scheduled scope date) I went into Logan's room in the morning and saw him sitting happily with no trach. Since this had happened before I wasn't concerned. He had only been awake for 15-20 minutes and was chattering away as usual. I tried to get the trach in and couldn't. I tried a smaller size and it wouldn't go either. He still seemed fine without it so I decided to call the doctor's office rather than 911 and see what they thought. They agreed I could just bring him in and have the doctor check him. By the time the doctor saw Logan the trach had been out almost 2 hours and still Logan was fine. He had Logan run around the office and listened to his breathing. He was great. The doctor said he didn't need to put the trach back. After 20 months my son was finally TRACH-FREE!!! I cried just a little and gave Logan a big hug. I called my husband at work on the way back home and told him the great news. He was thrilled too. As soon as I got home I took pictures and threw out the old trach. (Just in case I saved some clean trachs for a few weeks.) We went in a month later for follow-up and everything was still good. What a wonderful day it was when all the supplies and machines were gone from Logan's room and our house. It took a little while to get used to putting Logan down for a nap without the hum of the humidifier and hooking up the blue tube. It was great to leave the house without the suction bag and rechecking my catheter supply. It was especially nice not to have the trach last month when we moved from Nevada to Texas. I was so glad not to have to move all those supplies in and out of hotel rooms along the way. Life without a trach is great!!
It's been three months since the trach came out and Logan is doing wonderfully. His verbal skills have improved immensely. My personal favorite is when he says "I love you Mommy." He now gets to dump water over his head in the bath tub, splash in a pool and can stay with a regular baby sitter rather than a nurse. We will have to take him in next Spring to see if his scar needs any revision, but the hole closed just fine. We think it looks like a second belly button.
Thanks to the Bissell's and all the families on this site for your support these past two years. I hope that Logan's story and now this happy ending can help other families. I will keep Logan's other website updated if you want to see more pictures as he grows. Thanks and best wishes to you all!
Jennifer Bodley
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- 4 years 1 day
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- United States
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- Nevada
