Emma Linkfield
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Emma and her triplet siblings were born at 26 weeks after mom had an infection in her uterus. Sarah weighed 1 lb 6.8 oz and was 12" long, Ryan came along second at 1lb 7oz and 12", and then our dear Emma at 1 lb 6.8 oz and also 12". It was a long ordeal for the triplets, staying in NICU for 3, 4,& 5 months respectively. Sarah "sailed through" with only a systemic infection of unknown origin, requiring spinal taps, constant antibiotics, and one round of laser surgery for ROP. Ryan also had a systemic infection and was in isolation, needed the following surgeries: PDA, hernia repair (inguinal and umbilical), 2 rounds of laser ROP, undescended testical repair (also hydroseal), reconstruction of his skull (cranial synostosis), vent tubes in his ears. Ryan was difficult to get off of the vent, and almost died several times due to kidney failure. Sarah and Ryan are now healthy "normal" 2 1/2 year olds. They struggle with being under-weight and small, but aside from the usual kids illnesses, are proceeding normally.
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My dear Emma....She has been feisty from day one, which is why she is still with us! Emma needed a PDA surgery, 3 rounds of laser ROP, inguinal hernia repair, one LTR and eventually the trach. Here is how it played out...
Emma had a tendency to extubate easily from the ET tube. She has MANY tube reinsertions, and several bad ones. She has a primary diagnosis of acquired subglottic stenosis with tracheomalacia. Each time the ET tube was reinserted, the doctors' were finding it more difficult to insert and the ET tubes kept getting smaller and smaller. Emma never needed much O2, in fact she was removed from the ventilator and solely remained on the ET tube with humidified room air. After 3 months of age, they were still unable to decannulate her (ET) tube and opted to try a laryngotracheal reconstruction. Using a cartilage graft from her ear, she had a cricoid split/LTR. It was unsuccessful. At the time of surgery Emma was only 6 pounds. Emma then went for a tracheostomy, remained in NICU for another month, and came home.
Emma has flourished! She is competing to constantly keep up with her siblings! She has no fear, and attempts anything once without a second thought. If she gets hurt, she usually doesn't do it again!
In November of 2002, Emma had another LTR with Dr. Weatherly at the U of M Motts Children's Hospital. She had many follow up laser bronchs to remove reoccurring granular tissue. After 6 months of follow-up surgeries we were pleased to hear Emma's area of stenosis was reduced to 20% narrowing! The bad news was for the first time the doctor could see that there is more stenosis below it, adjacent to her trach stoma. Dr. Weatherly has moved on to Kansas Children's Hospital, and we are now in the care of one of his partners at U of M. We anticipate Emma needs more time to grow, and perhaps in time will have another LTR and decannulation at the same time. For now we wait and go on with the routine!
Emma has a paralyzed vocal cord, and with the malacia, they feel she isn't a candidate for a speaking valve. She vocalizes in a whisper around her trach, and we use American Sign language with all of the triplets. I was fortunate to have already been almost fluent in ASL, so teaching the kids to sign was always on the agenda!
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We know we are VERY BLESSED to have 3 babies with no long-term disabilities. We don't see Emma's trach as a challenge for her, rather she is who she is and that includes a trach. The only struggles we have as a family are with insurance companies and not getting adequate supplies! If we didn't have to rely on someone else to give us our essentials, I don't think I would have half the stress I do!
Update, March 2004: Emma went to see Dr. Walter Belenkey at Detroit Children's Hospital in January. After doing a DLB scope, he determined Emma's stenosis was reduced to 25% at site of previous LTR and the area below had stenosis of 20% at stoma site. He suggested returning for one of three possible procedures, which would be determined the day of surgery when he "got in there". In February, Dr. Belenkey found that Emma's stenosis at the previous LTR site ran closer to 15% obstruction, and decided to leave that area alone fearing further development of granular tissue upon removal of what was there. He then proceeded to work on the area including Emma's stoma site, which was the last source of difficulty (we optimistically hope, at least!) He removed her trach, cleaned up the tissue in the area of her stoma, and left Emma on the vent with ET tube in 'forced sleep' to recover for 5 days.
During Emma's forced sleep, she contracted RSV. I was irritated that she had been placed with a child with unconfirmed RSV, then proceeded to contract it herself! Emma has received the Synagis vaccine for RSV for 2 years during the winter months and none of the triplets had ever had a serious upper respiratory infection! To have this occur was appalling to me, and questioned if she should have been vaccinated prior to surgery, etc. Because Emma was almost 3 when this procedure took place, I believe her immune system was strong enough to fend off the virus. Emma went to have the ET tube removed in OR just in case Dr. Belenkey had to do an emergency tracheostomy. Upon scoping her after removing the ET tube, he could tell she had RSV, but wasn't the most serious case he had seen. He also reported her airway was down to 10-15% narrowed, and felt she had a good chance to remain decannulated.
Emma SAILED thorough recovery once the ET tube was removed. She was on room air within 3 hours, out of PICU the next afternoon, and sent home the following day, RSV and all. I am still apprehensively excited. I keep waiting for the other shoe to drop, and for there to be a serious problem with her airway. She no longer receives nursing services, and uses an apnea monitor at night (mostly so I can sleep!) She still has a harsh raspy voice and has decided she loves to quote movie lines from "Finding Nemo". She has decided it is okay to tell our Great Dane to "go lay down" even though he weighs 130 pounds more than she does! So far all is going well without her trach. She is scheduled for a stomal revision in a month and has her 3rd birthday the end of February. We look forward to hearing her voice improve with use, as all of us love to sing (and talk!) We are continuing to learn sign language as well.
Thanks and feel free to Email me any time with any questions anyone has! We are a truely blessed family!
Update, August 2004: Emma's first decannulation lasted 3 weeks. She became agitated and had
difficulty breathing, turned blue, and scared mom! We rushed to ER, found out the RSV she had contracted while in the hospital was not cleared up, and she had bronchitis. We stayed at our local hospital for two days, and then proceeded to see our ENT after I begged to be discharged! Upon
seeing the ENT, he found she had developed a big granuloma. She went through a laser removal of the granuloma, then "crashed" in the recovery room. They put her trach back in.
We went home and recovered with the trach, proceeded along for a few months to let her rest all the while going for scopes and seeing what was developing in her airway. When we returned for a scope, the ENT said she was going to need another LTP and had us scheduled to come back in July. I was apprehensive to have her 3rd LTP, but we do what we have to. Upon scoping her in OR, her ENT decided the area he was planning on reconstructing looked alright! WOW, we were surprised when he came out in 45 minutes and not 5 hours! He informed us she has narrowing in the area of her previous LTP's, but isn't too excited about doing another reconstruction of that area, as the 50% narrowing she has is due to redevelopment of scar tissue! She is very likely to scar up, and seems to require lots of laser follow up to remove granular tissue! So we are gambling currently. Emma has been without her trach again for over a month. She is doing well so far. She has no meds, no oxygen, and no support, its all up to her! We have an pulse ox on her at night, although she hates to have it on her toe!
Emma is 3 1/2 years old, weighs only 24 pounds and is just shy of 36 inches tall. She is petite, but she is the same size as her siblings. Her physician likes when the kids are a little bigger than she is to try decannulation, but the kids are taking their time at growing! Their 1 year old cousin is as big as they are! All three of them are speaking well, while Emma's vocal cords are still unresponsive. She may not be able to move enough air through them to make her cords move yet, and they may just need time to strengthen. She continues to speak "like everyone else". She sounds like she is whispering, but can easily be understood by anyone as long as you
are close enough to her to hear her.
I love to hear from other moms, so please feel free to email me with any questions! My triplets LOVE seeing the other kids online who have trach's! We recently met our first toddler with a trach while at Cedar Point amusement park!
The kids didn't know what to think, having only seen other "trach kids" in pictures! It was really neat to see a group of 3 & 4 year olds showing their surgery scars to one another saying
"I've got one like that, too!" We are all very fortunate to have this website, and need to support the Bissell family anyway we can! Thanks to Cynthia and Aaron for having been the inspiration for this forum! Thank you!
Update, Jan 2006
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4th Birthday Photo
Emma had her trach removed successfully in July of 2004. She was successful this time without the trach, and we left her stoma open to close on it's own slowly. She had no trouble with breathing around her stoma as if it wasn't there. Her stoma never closed on its own, and we went in for a reconstruction and closure of it in fall the of 2005. She has a paralyzed right vocal cord but is able to communicate well. She is in preschool with her siblings and her teacher reports she is able to make her needs known. Emma has truly been our miracle girl and never ceases to amaze us. Thanks for taking the time to read our story!
Melissa Linkfield mom to triplets: Sarah, Ryan, & Emma
