Jessica Whitmer
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Jessica's Dx: Subglottic Stenosis, Laryngomalacia, GERD, Aspiration
On March 20, 1997 our daughter, Jessica, arrived! Our perfect Spring baby with all ten fingers and all ten toes! We were so excited to finally meet her. Everything from the beginning seemed to be just as we had planned. As the days went on I began to notice that Jessica sounded quite "noisy" after I fed her each time. I had mentioned this to Jessica's doctor and he agreed that she needed to be evaluated by a specialist. After extensive testing and a bronchoscopy, her doctors came to us with unexpected news. Jessica's airway was very tiny and "floppy". She also was having problems with reflux of acid and aspiration. I can still hear the words, "She's going to need a tracheostomy" as they came out of his mouth. The shock was almost unbearable. As a nurse, I could not understand why my "perfect" little girl would need a trach. My husband sat beside me that day at the hospital dumbfounded. The day was July 14, 1997. Jessica was 3 1/2 months old.
I will never forget the moment that I walked into the ICU at Children's Hospital of Pittsburgh with my husband and saw our daughter for the first time with a trach. I cried. The more I cried, she cried, but I could no longer hear her. We spent 20 days in the hospital. There were times that I didn't even know what day of the week it was, nor did I care. My husband was trying so hard to be strong for me and I was just looking for someone to blame for what was happening to Jessica.
We went home on August 2nd and tried to settle into a routine. I went back to work and thankfully Jessica has a nurse that comes to our house to help us care for Jessica. (7 hours/day- 5 days/wk). My two older sisters, also nurses, have helped so much with Jessica as well as other family. I've learned a lot about people in general since Jessica has had her trach. It's not always the kids that stare and there were people that used to love to hold Jessica but wouldn't come near her because they were afraid. That was very difficult.
Over the last two years we have spent countless days at the hospital for doctors appointments, surgery, and 1 or 2 week stays because of pneumonia. We have definitely made progress as the months go by. Jessica has improved with the aspiration. (She is currently not fed by mouth but is fed by a tube in her belly). We also finally received good news that she will be getting her trach out possibly in April 1999. It's almost a bit scary to think that she won't have her trach anymore. I has always been her "safe" airway.
All in all, Jessica, as you can see is a happy, normal little two year old who's favorite word is "No"!!! She keeps us busy and we wouldn't have it any other way. It always makes me laugh when people ask me, "Will you have another one?" As if we are afraid this may happen again. I always say, "Why not?"
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- Update May, 1999
The day finally arrived! April 15th we were scheduled for a scope at Children's Hospital. We had anticipated this day for so long and when it was time to leave I had so many feelings that I had not expected. I will admit that a small part of me was a bit scared to get that trach out. It had been part of my daughter for over 21 months. I knew that she always had a safe airway and to take away that security was kind of unsettling. We arrived for surgery and within the hour Dr. Yellon had come to ask us if we would like to go upstairs and get that trach out! She was taken to the Intermediate ICU and almost 3 hours later they decided to cap off the opening and see how she tolerated breathing through her nose and mouth. I thought for sure that things would not go smoothly because they never do. This time we were lucky! Only 24 hours later she had it taken out. I would have liked to be there when they did but I missed it by only 15 minutes because I had worked the night before. Her stoma looked great. It was taped with waterproof tape and she was breathing through her nose just as if she had done all her life.
This long journey is not quite over yet. Jessica still doesn't eat by mouth. She is scheduled for a swallow study on June 1st. and we hope that it goes well. I do believe that it is sometimes more difficult to watch as your child begs to eat and I can't feed her.
I have to admit that my husband and I have learned a lot about ourselves and others as well over the last two years. I would like to think that I am a better nurse because I have had the opportunity to experience the role of being the patient's family. I have thought about how I would feel taking care of children that are sick and/or dying. I am seriously thinking about applying to Children's Hospital of Pittsburgh.
Jessica's specialists. Dr.Yellon (ENT) and Dr. Kocoshis (GI) have been beyond wonderful. They have allowed us to feel as if we have been part of her care the entire time. That is important to me. I owe a lot to them and to Children's Hospital.
As Jessica grows older I will be sure to tell her all about the first two years of her life. I would also like to think that she is a happy and well adjusted little girl who has parents and family that love her to pieces!
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UPDATE: October 2000 - It has been 1 1/2 years since Jessica has been without her trach. I can
hardly believe it has been that long. She is doing so well and has even
started pre-school or "pretty school" as she prefers to call it! She
has been eating like a champ and her trach scar is barely noticeable
after they did a small reconstruction to make the "hole" into a line.
We had a wonderful addition to our family in February of this year and
Jessica has a beautiful sister, Emily. In the beginning we were a bit
worried because she was exhibiting some of the signs that Jessica had
presented with when she was born. After lots of worry that this would
happen again to Emily, we found that she also suffers from
gastroesphosageal reflux and currently is managed with medication. Many
of the things that we are experiencing with Emily are FIRSTS for us. I
think that one of the most difficult things that we deal with is not
being able to "hear" our baby coo and cry. It is music to our ears to
"hear" everything that Emily has to say...
I still work full-time in our local hospital on a pediatric unit and I
must say that many of the things that I have learned when dealing with
Jessica's situation, i.e.. hospital stays, nurses, etc. has helped me to
be a better nurse.
I would love to speak to anyone with similar issues as Jessica's and
maybe give them encouragement that there is hope...
Update April 2003 - Jessica is 6 years old now (trached at 3 months). She is loving kindergarten and thinks she is so grown-up!!! I can hardly believe it has been 4 years this month since she was decannulated. I sometimes think back and realize how rough it was for awhile. She is proud to show people where her "tubey" was. I thank you Cynthia for your web site. It is an incredible resource. It has always made me feel like I was not alone, that there are others out there dealing with the same things I did. I always promote your site to anyone I think will benefit.
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Email Patti Whitmer (Jessica's Mom)
