Ashlyn DeCola
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Ashlyn was born on March 11th and she was fine when she came home from the hospital on the 13th. A couple of days after she came home I started noticing that she would grunt a lot, kind of like a puppy does. I told my doctor about this at her one week appointment and he told me that she was probably just a noisy baby. By two weeks of age, I started noticing her making this hi-pitched squeaky noise, to some it sounded almost like hiccups, to others it sounded like a chipmunk. I told her doctor again and again he said she was just a noisy baby. We then went to Delaware to see my Mom and Dad and to help my Mom out after her surgery; we were there for two weeks. While we were there, one night she had this really bad attack of strider (what the noise that she was making is called) and she seemed to be having trouble breathing. I decided that I would take her to Kent General Hospital in Dover, and as I started to get my stuff together she stopped. So, I waited. We came home on Monday, April 15th and on Tuesday she had a well baby visit, at which I asked my doctor about the noises again. He said they should be fine, but John and I decided to make a cassette tape of the noise and bring it to him. We brought the tape to him on Thursday and by that Friday, April 19th she had such a bad attack of strider that I didn't sleep the rest of that night or the rest of the weekend. I called her pediatrician on Monday and had an appointment to see him and in a week she had lost two ounces (she had had her well check on Tuesday, April 16th and weighed 10 lbs. 2 ounces), and she had turned blue around the mouth, plus he didn't like the sound of the tape, so he decided that I should go to the ER at Massachusetts General Hospital (MGH). While there they hooked her up to a pulse-ox meter (the machine that reads the oxygen levels in your blood), while she had her attacks her levels kept dipping down to the lower and upper eighties (which is not good, normal for a baby is between 94 and 100 and they will accept 90 to 94%) so they decided that they need to keep her there and started their series of tests with a chest x-ray to see if she had any kind of physical abnormality in her chest (or in her airway). The next day they did a test called a fluoroscopy and a barium swallow. These tests were to look and see if she had any blockage in her airway or esophagus. On Wednesday they did a laryngoscope, an EEG, and then a pneumogram (sleep study) and a pH probe. Dr. Mankarious (her ENT) asked us to make a video tape of her so she could see one of her episodes, because Ashlyn never did it for a doctor. She said it was a great tape and helped confirm that she does have what she thought she had. All of her tests came back normal, except for the laryngoscope which showed that she has laryngomalacia (laryngo=larynx and malacia=soft or floppy). Which means her surpraglottic tissues (the flaps of skin that keep food and water from going into your lungs) are too big. On Thursday April 25th, she had a laser surgery called a laryngoplasty. This surgery reduces the skin flaps that are too big to try and help with her strider and blue spells. She did well and for four or five days we didn't hear anything!!
Then she started right back up with the strider and had two blue spells (turned blue around her mouth) in one day. We went back into the ER at MGH on Sunday May 5th and she was scheduled to have a second laser procedure on Monday May 6th. After this surgery she did really well for about a week and a half, and then had another blue spell, so we ended up back at the ER at MGH again. They did a second pnemogram which came back normal. On the 23rd of May, she was diagnosed with Diaphragmatic flutter, which is where her diaphragm, instead of pumping up and down, shutters and causes her airway to collapse. Being a baby she depends upon her diaphragm to breath (adults are able to breathe with or without the help of their diaphragm) and it would shutter and cause her to look like she was almost hyperventilating and had a severe case of the hiccups. We left MGH on Saturday May 25th.
On Tuesday May 28th we called Dr. Katz at Boston Children's Hospital. John had found an article written by him on the internet about diaphragmatic flutter and in it he said there was just one test that they had to do to find out for sure whether or not a child had diaphragmatic flutter. He called us right back and we had an appointment for Thursday May 30th. On Thursday, Dr. Katz hooked her up to a type of a sleep study and found that she did have diaphragmatic flutter and that she was fluttering at a rate of about 300 breaths per minute! He hospitalized her to their NICU to start her on Thorizine to stop the flutter. She had an MRI as well, because both laryngomalacia and diaphragmatic flutter are neurological disorders. Her brain stem wasn't developed normally while I was pregnant with her. Both of these disorders she will outgrow by the time she is one and half (usually by one year of age, but a couple of cases have taken to 18 months). Larynomalacia usually 90% of children are fine by 8 months of age, 95% by one year and 100% by 18 months. Diaphragmatic flutter children are usually fine by one year of age, but they have seen one case of a child that stopped fluttering at one and then started again at 18 months for one month and then stopped again and is fine now (he is eight or nine now). Anyway, she got out of Children's on June 2nd. From then till July 9th she had been ok, just with minor fluttering appearing in the end on June. We increased her Thorizine to try to stop that, but it never did go completely away.
On Monday July 29th 2002 we went to MEEI at 6am to have her trach put in. She was in surgery for about two to two and a half hours. She came our and looked really good. We only had one little scare of her intubations tube falling off and her not being able to breath because she was sedated. She woke up about 12 noon or so, and was extubated and started smiling and chewing on her oxygen mask. She was happier and calmer then I have ever seen her. She, for the first time in her short little life, didn't look panicked. She was in the PICU until Friday afternoon. She had her first trach change on Friday morning. We were then moved to the Pediatric floor and were there till Tuesday afternoon, when we went home. I changed her trach with my Mom there to watch (She surprised me with a visit that weekend!!), and John changed her trach on Monday. She's been doing great since this was put in.
When she turns one, we will cork her trach and see how she does, if she doesn't have any noises we will be able to have it removed. If she does, then she will have it for at least three more months and then we will try again. So, at least this is not a permanent thing!!
Update - July 2003: I just wanted to let you know that Ashlyn DeCola was decannulated on January 3, 2003. She has been doing really well since, a few touches of trouble, which to me seems like asthma. Her stoma hasn't closed completely, she can still blow some air through it. She has an appointment coming up to talk about this and to see how she is doing, but I feel fairly confident that the trach is out for good!!
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Ashlyn with her sister
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Ashlyn with lovebird Baby, and Dusky Pionus Storm
Thank you,
Kelley & John DeCola
