Allison Kelsey
Last August 28, 2000, my husband and I received a 1 pound, 3 ounce miracle. Her name is Allison Kelsey. She was born 3 1/2 months prematurely because I developed HELLP Syndrome and if we hadn't gone thru with the C-section we would both have probably died. She came home from the hospital this past Friday at 5 pounds 2 ounces with a trach. She needed the trach because of scarring on her vocal cords from frequent self-extubations. We tried the cricoid split surgery first, and it wasn't a complete failure, but she still couldn't maintain her airway for more than an hour or two. Her surgeon is optimistic that she will outgrow the need for the trach and that her vocal cords will heal as she grows. Allison has had 2 laser eye surgeries and has BPD. She is on oxygen intermittently, (we just got a pulse oximeter last night), an apnea monitor, and an air humidifier with a trach collar. She takes 2 medications and 2 vitamin supplements. Right now she has a bottle every 4 hours (2 ounces each). My husband is the stay-at-home (I am so jealous) while I work.
Everyone who encounters her loves her. She had literally hundreds of people praying for her while she was in the hospital, and I hope they will continue their prayers. She has a family who loves and cares for her. Everyone says we're going to spoil her, but we feel like she deserves a little spoiling after spending her first 5 months in the hospital. She was almost 2 months old before we were even able to hold her, so we try to make up for it a little now. I am grateful to our families, friends, the nurses, the chaplain and support staff who have made this all a little easier by their show of support. I don't know how we will ever be able to thank them, and now that she is home and can start having visitors we hope they all come by when they can.
In her short life she has accumulated many nicknames. While I was pregnant we called her the Hokey-Pokey Kid, because she would kick me whenever I tried to lay down to sleep. When she was in the hospital we called her Alli-oops because she would pull her respiration tube out so often and so easily. Her Daddy calls her Bug because she gets all big eyed whenever she sees something or someone new. I usually call her Sweetpea or HoneyBunny or Babygirl. No matter what we call her, she will remain the most-loved little girl in the world.
Update June 2001 - I just wanted to give an update on Alli's condition...She broke the 9 pound mark today, weighing in at 9 lb 2 oz at the doctor's office this morning. Her first complication since coming home in January was being diagnosed with pneumonia about a week and a half ago. We've been giving her antibiotics and nebulizer treatments and she is improving daily. She is such a good-natured baby that the only way we knew she was sick was that she lost her appetite! Her vocal cords remain too irritated to decannulate yet, but we are having some tests done to see if reflux is responsible at the end of the month. Alli is trying to crawl but hasn't quite figured it out yet. She is still only taking formula but we hope to get her used to cereal and juice soon. As you can see from her picture, she is always smiling and happy. She is "Alli-Boo" now because she loves peek-a-boo so much. She is tolerating the Passy-Muir valve better and it is great to hear her "talk" to us--ooh and aah never sounded so good!
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She is doing so well now! Allison just celebrated her first Christmas at home. She had a lot of fun with the paper and sacks and boxes. I guess she likes the toys, too.... Alli was in the hospital for 2 weeks in December with RSV/pneumonia. That was a very scary time for us, we were very close to losing her then. Before she was discharged she had the fundoplication surgery and also a g-tube with a Cubby Button placed. We are trying desperately to get her gaining weight. She is 14 lbs and 2 oz as of yesterday. She has a strong oral aversion right now and gets most of her feeds thru the tube. She pulls up and cruises around the edges of the furniture, but we haven't been able to coax her into taking steps holding only our hands yet.
She may get her trach removed soon. We had a bronchoscope last Friday (Jan 4, 02) where it was a possibility, but the surgeon found a flap of tissue that had grown in and needed to be removed so he didn't attempt to decannulate this time after all. We know she is close to being ready though, because when we go to change her trach, once the old one is out she wriggles away and crawls off to play so we have to chase her down to put the new one in place! The ORL surgeon says we might try in March if all still looks good.
Update, May 2002: On May 13, 2002 Alli spent a day and night in the hospital for observation after removing her trach. She did quite well and we were sent home! She is making wheezing sounds that we were afraid were an increase in her asthma, but a visit with the pulmonologist put us at ease about that-he confirmed the ORL doctor's opinion that most of the noise was coming from her throat. They both feel that once she learns to relax her vocal cords this will diminish. It already disappears when she's sleeping. Her sats were and are still fine and her activity level is just the same. I'm not really sure she knows anything is different! It is a great treat to see my baby girl without a trach...to go out without 20 lbs of equipment...to carry her to bed without coming back for the suction machine...so many things that were a part of our lives for 16 long months. It was scary the first few nights, I don't think I slept a wink. She is making lots of good sounds, learning that moving her mouth around changes them. We hope to get a few words out of her soon. Thanks to everyone who kept us in their thoughts and prayers thru these last few weeks leading up to this.
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Update December 2002: Alli is 2 years old now, it's so hard to believe. Our last update was in the Summer, when she was decanulated. But, in July she had to be trached again. We were very scared about what was happening. She was vomiting at every feeding and no one was able to tell us why. We eventually had a life threatening event, where the vomit was clogged up in her throat and her airway collapsed. We spent 2 weeks in the hospital and came home with the trach again as well as a new fundo surgery. She is doing better now on an elemental formula and a new Zevex portable feeding pump. We are still having reflux related problems, and will be spending 2 days next week at the hospital doing some more tests. But she is happy and otherwise healthy. She is now 19 pounds and 32 inches tall. She began walking in September after eye surgery (she was cross eyed) and now runs around everywhere. We may be going to Cincinatti in February to see Dr Cotton if things aren't resolved to our satisfaction here by then. We are on a waiting list for Special Care Daycare so I can return to college and study nursing.
Update, November 2003: It has been almost a year since I sent in an update. I kept waiting for one reason and another, always hoping to be able to post that she was
decannulated again, this time for good. But, so far this has not happened. We are patiently waiting for next Summer when the doctor is going to schedule the LTP surgery.
Alli is 3 years old now, transitioned out of Early Intervention and into the public school system. She is enjoying preschool and making great improvements in socializing and tolerating new things. Her recent diagnoses of Moderate Autism made us worry initially that school might be too much for her, but she has surprised us once again. There are 6 kids in the class and 3 adults, plus she gets OT and ST so she has lots of individual attention. She can now sit in her chair and participate in group activities. She loves the slide and ball pit, as well as the keyboard synthesizer and the computer. Her "best friend" is a cute
little guy who is finally learning not let her boss him around!
Alli still isn't talking, although she has said "no" quite clearly and at appropriate times recently. She has picked up the maa sound as well as muh, duh and buh. She already had daa and baa so maybe we will get some words from her soon. She manages to let us know what she wants by leading us by the hand and by hooting and crying until we figure it out. We want to begin some use of augmentive communication devices at school soon, but we're holding off a bit to see if she starts some word first, and trying to decide what to use. She will wear her pmv all day at school and babble away like crazy.
Alli still sleeps in our room, although we recently bought her a toddler bed. She prefers ours but will sleep the night in hers and join us in the morning when she feels it's time to get us up. She only needs occasional suctioning at night, but her g-tube feeding needs to be closely
monitored as she has tolerance and gagging issues. She is finally beginning to experiment with putting food in her mouth again, which makes me think the second fundo and meds have finally eased the reflux pain. She will drink water and tea and diet Dr Pepper. We are working on teaching her to hold the cup herself without dumping it all over, but so far it's slow going. Since she started school she has become even more of a camera ham, but that's ok because I love taking her picture and showing off my beautiful girl. She is about 25 pounds now and 34 inches tall. And just as sweet as we could ever ask for.
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Update, September 2004: On August 19th Alli got her trach out without surgery! This is our 3rd planned decanulation, and so far she is doing fantastically. When she was scoped in July her airway doctor said he had never seen her airway looking so good and wanted to try capping. We capped for 4 weeks and then at an office visit we just pulled her trach out and it's been out ever since.
She grew 2 inches and gained 2 pounds over the summer. She also got to try therapeutic horse riding a few times. We're waiting on scheduling conflicts to resolve to see if she will get to ride regularly. She really seemed to like it and wasn't a bit scared.
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Alli is back in developmental pre K this year and seems to be loving it. Her teacher says she is using "jargon" (a sort of babbling but with the cadence of speech and recognizable words here and there) all day. Her laughter is MUCH louder and sweeter without the trach. She added "play doh" to her words yesterday, so she now has an odd assortment of things she can say recognizably, including Boobahs (the tv program), Pop-pa, No way, Mommy, Daddy, boy and baby. She is learning to pick out letters of the alphabet when asked and 3 basic shapes as well.
