Lindy Lafferty
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In May of 2001, my husband and I were both shocked and excited to learn that we were pregnant with triplets! My husband has 2 daughters (currently aged 16 and 13 years), but this was my first pregnancy. My due date was 12/25/2001. I had several friends and acquaintances that had had twins and triplets with relative ease, so I was not overly concerned about my pregnancy. I was monitored closely by both my obstetrician and perinatologist. I was extremely nauseous through the first 20 weeks of my pregnancy, at one point needing IV fluids to keep myself hydrated. I quit working at 22 weeks, and looked forward to resting and preparing for the babies - we had learned that we were having 2 girls and a boy. In week 23, at a routine appointment with my perinatologist, Dr. Willcourt, I was horrified to learn that I was in labor and that "Baby A" was trying to push out. I had not felt any labor pains or had any other signs that I was in labor. My doctor gave us a 5% chance of saving any of our babies. We were terrified.
We went straight to the hospital and I was admitted, put on magnesium and was lying flat on my back. Dr. Willcourt came into my hospital room that evening with a plan. The following day we would deliver "Baby A", then if no other babies were immediately pushing out, he would place a cerclage in my cervix and I would stay in the hospital and wait, hoping to get as many weeks as possible before delivering the other 2 babies. On August 29, 2001 our beautiful Jillian was born. She was stillborn, the trauma of birth being too much for her tiny body. She was perfect in every way, and we are thankful that we got to hold her and be with her for that short time. No other babies were trying to push out and the cerclage was successfully placed. I then lay in my hospital bed and waited. Needless to say, it was emotional and stressful, especially after the events of 9/11 - but we stayed positive and prayed! On October 2, 2001 Lindy and Aidan were born at 28 weeks gestation.
Lindy cried when she was born, and even though she was smaller than her brother, seemed to be the stronger baby. She was breathing on her own, while Aidan was on the ventilator. She weighed 2 pounds 3 ounces at birth. On day 7 she suffered a grade one IVH. Her doctors did not think there would be any residual effect from this as it looked very small. This was also when they noticed a stridor and more effort in her breathing. They alternated between a nasal canula and the c-pap to help with her breathing. At 4 weeks they finally put a scope down her trachea and found out that her vocal cords were paralyzed. We were told that there was a 50-50 chance that they would begin moving on their own, so the doctors wanted to wait a little while before doing the tracheotomy. We waited 4 long weeks, hoping and praying and watching Lindy struggle with the hated c-pap (I was concerned that her nose would be permanently damaged). She was trached at 2 months of age, the same day that Aidan came home. Two weeks later, she was in surgery again, this time for a fundoplication and placement of a g-tube for feeding. The next 6 weeks were spent trying to get Lindy home. Some of the doctors wanted us to have a nurse for the nights, but we had no luck in finding one. We live in Lake Tahoe, which is very small town, and the personnel are just not available. We finally convinced the doctors that we could be trained and do it ourselves. I spent time with the nurses and respiratory therapists and learned how to do everything myself. On 2/1/2002, at 4 months of age, Lindy finally came home.
Since coming home, Lindy has thrived. She is now 18 months old (April, 2003). She can vocalize and is beginning to sign. Initially, she did awesome on the Passy-Muir valve, but since a bout with pneumonia last summer (hospital for a week); she has not tolerated it as well. She has also been oxygen dependent since the pneumonia at elevations of above 5,000 feet (we live at 6,200 feet). She is crawling and pulling herself up, and we are sure that she will be walking this summer. In February of this year, she had tubes put in her ears as well as an adenoidectomy. She is still primarily g-tube fed, although we are working with a speech therapist on oral eating, and are making some progress. Lindy is a happy, wonderful baby. She is so patient and tolerant of everything that goes on with her and her equipment. It was scary at first when we brought her home, but my husband and I and her older sisters have overcome our fears and have a somewhat normal routine. There appears to be no other problems with her outside of the VCP and the g-tube and her brother has progressed normally. We know that we are blessed and the Lindy and Aidan are truly miracle babies.
In addition to Lindy's local ENT in Reno, Nevada, we have consulted with Dr. Nuss at Children's Hospital in Boston. There has been no improvement in her vocal cord movement. Our local ENT had initially said if there was no improvement by 2 years of age, that surgery was an option. Of course he is familiar with Dr. Cotton and his expertise, and has referred several patients to him. Dr. Nuss on the other hand was much more conservative in his approach. He felt that Lindy was doing well overall, and that we should hold off on any surgery until she was closer to school age. That we should give her airway a chance to grow and develop and see if any cord function returned. At the time (9/02) that seemed like a good idea, but after almost another year, we are again considering the surgical options. We are seeing another ENT at Stanford later this month and hope to get more information on the different surgeries available. We would love to get some feedback from other parents dealing with VCP and from parents whose children have had the surgery, either with Dr. Cotton, or other surgeons. We would also be happy to correspond with any parents dealing with the challenges associated with a trach baby.
Update 8/8/2003 - Lot's has happened since the posting of Lindy's page in April of this year. Shortly after submitting her page to this website, we had a consultation with Dr. Kay Chang at Lucile Packard Children's Hospital at Stanford University. I had been referred to him the previous year, but had procrastinated on setting up an appointment. My Aunt finally took charge and made an appointment for me! We saw him on April 24, 2003. After he had taken a look at her vocal cords, I was shocked when the first words out of his mouth were "she does not have paralyzed vocal cords". After seeing her initial ENT at Washoe Medical in Reno and following up with Dr. Nuss at Children's Hospital in Boston, we were told that VCP was the problem and that there was a chance that she could get better. In hindsight, I remember both doctors saying that the vocal cords did move slightly - so how could paralysis be the diagnosis - I obviously was not asking enough questions. Dr. Chang felt that her vocal cords and nerves, etc. were fine, but that her arytenoid joint was fixated and if that was the case it would never get better without surgical intervention. He wanted to follow up with some additional tests.
On May 23, 2003, Lindy had an outpatient procedure performed at Stanford. Dr. Chang put a microscope in through Lindy's mouth and got a very close look at the vocal cords and the arytenoid joint. After looking, he confirmed for us that her joint was scarred (most likely resulting from a combination of getting nicked at intubation and reflux - not congenital!) and that it was almost completely immobile, a grade 4 fixation. He also said that there was quite a bit of granular scar tissue above the trach tube and it appeared that the tracheal wall had collapsed and sealed off her airway (that is why her Passy-Muir valve has not been working well for her). He tried to clean out some of the scar tissue, but felt that there was too much and he would have to do it at a later time, perhaps even opening her trachea up to do it. We had to have some more tests done to determine if Lindy was a good candidate for surgery. I was very tense about the tests, because if they did not go well, Lindy might be a "chronic trach baby" or in other words, have the trach for an undetermined amount of time.
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Lindy during Ph Probe Test
On June 11 and 12 we went to Stanford again and Lindy had a Ph test done. This is a 24 hour test where they put a probe up her nose and then hang it down the back of her throat. The end that comes out her nose is attached to a small computer. You push a button on the computer when you feed her and then it measures any acid reflux that comes up into her esophagus. She was really a trooper, as she had to wear arm splints to keep her from pulling the probe out. The next day they pulled the probe and then we went to X-ray and had a modified barium swallow test. We had to get her to drink liquid with barium in it (no easy task as she does not take much orally) and then the technician would watch were the liquid went after she swallowed it through the X-ray machine. We then met with Dr. Chang, who was pleasantly surprised at her results. There was no reflux - her nissan was holding and not allowing anything up. Also, although her mechanics of swallowing are not good, there was no aspiration once she did swallow! Dr. Chang thought she was a good candidate for a partial arytenoidectomy (taking out a small amount of vocal cord tissue and some of the cartilage from the arytenoid joint to create an airway. He thought that after she had healed up from that procedure, he would then open up her trachea, clear out the scar tissue, shore up the tracheal wall collapse, and hopefully decannulate after that. We finally had a plan! Dr. Chang did not think that we had to wait until she was older to perform the procedure.
On July 18, 2003, the partial arytenoidectomy was performed. It was again an outpatient procedure and we were able take Lindy home that afternoon. We were amazed when Dr. Chang came out of surgery and told us that he could not believe the change (for the better) in her airway. He was able to clear out all of the scar tissue and discovered that the tracheal wall was not collapsed and her airway was about 50% open. He said that everything looked great, and that he was confident that she would require nothing more - no more surgeries or anything! He wanted us back on July 28 for a follow up and possible decannulation trial at the hospital. We could not believe it!
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On July 28 we were back in his office. He took a look at his handiwork and was very happy with how everything looked. He felt that he had doubled the size of her airway. We decided to take the trach out in his office and see how she did. We took out the tube and covered the hole with my finger - she was breathing through her nose and mouth for the first time in 20 months! She had a heavy stridor, but her color was good. We did this for about 5 minutes and then put the trach back in. Dr. Chang decided he wanted to be conservative. He feels that Lindy's airway is adequate for decannulation at her baseline, but was worried that if she got a bad cold or was sick, that swelling in her airway would land us in the hospital. He thinks that 5 or 6 months of growth would open up her airway another 30% to 40% and then the swelling would not be such an issue.
We are scheduled to back in January for reassessment and once again possible decannulation. We feel very fortunate to have found Dr. Chang. He is a wonderful doctor, very honest and open and I encourage families in the west, who are a long way from Dr. Cotton in Cincinnati, to seek him out. Do not hesitate to get 2nd and 3rd opinions on your child's condition. It can mean the difference between decannulation and waiting until school age. Also, I know that I was always distracted in the beginning and did not ask the right questions. Be prepared and write your questions down before getting to the
doctor's office.
Aside from all of the medical news, Lindy is doing awesome. She began walking in July at 20 months (17 months adjusted) and is quickly catching up to brother Aidan. Their favorite game is chase! Now that Lindy is older, suctioning has become less frequent and she is much more in control as far as coughing and clearing the trach herself. I rarely have to get up in the night to suction her, just usually to adjust the mist collar/tube. She is vocalizing a lot and can say: mama, dada, dog and hat. She is also able to tolerate the Passy-Muir valve since the 2nd procedure and is enjoying making loud sounds. I am confident that once the trach is out, she will not take long to catch up verbally. For all you parents out there just starting on this journey, know that you can do it. Mike and I were scared when we first brought her home with no nursing care, but we did what we had to, and we've watched our daughter grow and thrive here with us and her brother and sisters. We're happy to share and talk with any parents who are concerned about bringing a trach baby home. We will update again in January when we get back from Stanford. Thanks to all of you who have contacted me and know that we think of all the children on
these pages often.
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Lindy & Aidan
July 4th 2003
We are Mike and Julie Lafferty and you can reach us at mike@tahoelakecottages.com
