Kaylyn Shuster
TrachKid Profile
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Kaylyn Rachel Shuster
Diagnosis: 29- week preemie; tracheotomy tube due to laryngomalacia and enlarged tongue since 5/13/03; g-tube since 5/13/03; hydrocephalus due to grade III/IV brain bleed; VP shunt since 3/8/04; Beckwith Wiedemann Syndrome; mild cerebral palsy; developmental delays; hypotonia; reflux
Hi! We are Mike and Angie Shuster, proud mommy and daddy to Kaylyn Rachel Shuster. We want to share with you the story of our only child, who was born 11 weeks prematurely on February 19, 2003, after an uneventful pregnancy. We were completely in shock when I went into labor on February 18, since I had not been having any problems until the week before, and we were expecting a May baby. Kaylyn was born at 7:43 a.m. on Feb. 19 at Freeman Hospital in Joplin, Missouri, weighing a whopping 4 pounds and 9 ounces.
That's huge for a 29 weeker.
Of course, she was taken immediately to the NICU. For the most part, she had a typical NICU stay. We had good days and bad days. There were days when we were just waiting for her to grow and take a bottle so we could take her home. She was never able to be without supplemental oxygen during her NICU stay, but we were optimistic that she would outgrow the need for it.
Then there were the days when we experienced the whole range of negative emotions that no parent should ever have to face. We alternated between shock that this was actually happening to us, grief over not having our baby home with us, fear for her health and safety, anger at people who were living normal lives and had healthy children that they didn't take care of and even anger at the NICU people because they got to do more for our child than we did. For the most part, though, she had a pretty typical NICU stay, no major complications. However, one day when she was about a week old, we went in to see her and she was completely lifeless. She could hardly even open her eyes. Mike told the nurse practitioner that there was something wrong and she insisted that Kaylyn was fine. Mike kept insisting that she was not acting right and she finally agreed to run some tests, just to make us feel better. Well, the tests showed that Kaylyn had Necrotizing Entercolitis (NEC), a very serious intestinal infection that is fatal if left untreated. When we came to see her later that day, there were a bunch of doctors and nurses hovered around her and we were told we could not see her. So we waited impatiently in the waiting room as they did surgery to insert a broviac so that she could get medications and have blood drawn easier.
They came to the waiting room to get us and we were told that she had not responded well to the sedation. It slowed her breathing and she had to be put on a ventilator. We went back in to see her and neither of us thought she was going to make it. She looked so lifeless laying there with machines breathing for her and feeding her. This was the first time that we were faced with the possibility she might not make it. We didn't leave the hospital until she pulled out of it. And she did pull out of it because she is a little fighter. The rest of her stay was pretty uneventful.
She had a hard time learning to take the bottle and was very slow at it. But by April 15, she was taking the bottle consistently enough that she was discharged and we got to take our baby home. Little did we know that joy would be short-lived. For the three days that we were home, Kaylyn did not take a bottle very well. So by April 18, we took her to the pediatrician, who said she was dehydrated and she was readmitted to the hospital, this time in the pediatric unit.
We spent three days there, and the neonatologist told us they didn't know what else to do for her, so they were going to transfer her to St. Louis Children's Hospital, 270 miles away. On April 21, the plane picked up my husband and daughter to fly to St. Louis. Watching them get on the plane was heart wrenching. The two people I cared about most in the world were leaving and it would take me another five and a half hours to catch up with them by car. After a few days in St. Louis Children's pediatric unit, they transferred Kaylyn to the Pediatric Intensive Care Unit because she was retaining carbon dioxide in her lungs and her chest retracted really bad when she breathed. They thought it was too much effort for her to breathe. She also never again took a bottle. The only reason we have gotten is that it was too hard for her to eat and breathe at the same time, so she quit eating.
While at St. Louis, we saw Dr. Jeffrey Marsh, who is an expert in Beckwith Wiedemann Syndrome. The NICU doctors called in a geneticist because of some of Kaylyn's unusual characteristics. We were originally told she had Down Syndrome because of her facial features and enlarged tongue, but the genetics test came back negative. The geneticist came up with Beckwith Wiedemann Syndrome, which explained why she was so large at birth and it is also the cause of her enlarged tongue. Kaylyn also has to have cancer screenings every three months because BWS puts her at risk for certain types of tumors.
After many ups and downs at St. Louis, they finally decided to do a tracheostomy and a g-tube at the same time. Of course, we were terrified throughout her surgery and she had to be put on a ventilator again afterwards, but 9 days after the surgery, we got to take her home again. On May 22, we brought her home for the second time.
Since then, she has had eight more hospitalizations. Three of these have been related to the trach. She has been in the hospital twice for aspiration pneumonia, which trach kids are prone to getting. She throws up and it gets into her lungs, turning into pneumonia. The second time she got this, we were on vacation in California and she was admitted to Oakland Children's Hospital. She has had two trach infections and her immune system is pretty weak, so she seems to pick up everything going around. Two of her hospitalizations were to do EEG's because Kaylyn had three episodes that we now are sure were seizures. These seizures were the second episode where we were not sure if we were going to lose her. Her body just shut down and she could not breathe.
In February 2004, we faced another terrifying ordeal. We took Kaylyn to a developmental clinic, which was supposed to be just a routine follow up from the NICU. The neonatolgist was really concerned about her large head, sunsetting eyes and irritabilty. They had been monitoring her head size and doing occasional CT scans. In fact, she had a scan scheduled for the following week. By the time I got home from her appt., there was a message on the phone from Kaylyn's pediatrician saying that she wanted a CT scan done that day. Well, the CT showed a huge difference in the amount of fluid from her last scan. So we made a trip that evening to Children's Mercy Hospital in Kansas City to have her looked at by the neurosurgeon. He said that she needed a shunt and it was scheduled for a week and a half later.
We were told that because of the large size of her ventricles, there was a 20% chance that her brain could collapse during surgery. But if she didn't have the surgery, there was a 100% chance the fluid would eventually kill her. The waiting was so hard. I didn't eat or sleep the entire week. We were both terrified of what could happen. But on March 8, 2004, she had the surgery to place her shunt and she did wonderfully. It has made such a difference in her development. At 16 months old, she is now rolling over, lifting her head up when she is on her tummy, grabbing toys, laughing and is enjoying life so much more. She still does not like to be away from home and is very scared of certain noises, like the vacuum cleaner, blender, Velcro and zippers. However, other sounds like rubbing your hands together, scratching something or scrubbing makes her laugh. Our goals are to get her to support her head, sit up, crawl and hopefully learn to walk eventually.
She gets physical therapy, speech therapy and occupational therapy every week. She does not get any nursing care. We have simply had to learn how to take care of everything ourselves and survive on little sleep. We also get no time to ourselves because we will not leave her with a babysitter. Her grandma has stayed with her three times for a couple of hours each time, but even that makes us nervous.
She still needs oxygen off and on, especially when she gets sick, so we keep it in her room just in case. We have had to make sacrifices. I have learned not to sleep soundly and sometimes we even sleep in shifts. I used to be a quiet person and I have had to learn to stand up to people to get what my daughter needs. When she is in the hospital, we take care of everything and the nurses only come in to do vitals or if we need something. On one of her visits, the respiratory therapist decided she wanted to suction her, so she started shoving the entire catheter down her trach. My husband grabbed it out of her hand and she said that she was just pushing until she got resistance. Well, of course, Kaylyn started having blood in her trach and the pediatrician said to let us do all the suctioning. It's a small hospital and they know nothing about trachs. I just love going to the hospital and finding out that we know more than they do.
Despite everything we have gone through, we would not change a single thing about our precious daughter. She is a miracle and the greatest thing to ever happen to us. We wouldn't take back a single thing if we could. Kaylyn is an amazing little girl and we thank God every day for choosing us to be her parents.
Mike & Angie Shuster
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