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|Newsletters: Alycia’s Journey|
“It’s fun to have fun, but you have to know how.”
We are the Levy’s from Silver Spring, MD. We have a beautiful, happy 4-1/2-year-old daughter named Alycia who is, to say the least, a piece of work. Alycia has an older sister named Emily who is even cooler than she thinks she is, and two parents who are decidedly not as cool as we think we are! (Well, to tell the truth, her mom Stefanie was, and is, pretty cool, while I still laugh at Gilligan’s Island re-runs). And let’s not forget Rocky the Cat.
Alycia goes to nursery school every day and has lots of friends, except, she says, for a boy named Josh, because as she told me today, “...Daddy, he just doesn’t cooperate.” She went to Disney World when she was two and almost pulled Pinocchio’s nose clean off, and she went with us to Las Vegas this past December where she pulled the handle on a slot machine after finding a quarter on the floor. I do not know who was more upset in the two events: Pinocchio or the two casino security guards who rushed over to Alycia, (and yes, to her not-so-cool Dad who thought it was hysterical), and kicked her out. Either way, Alycia thought both instances were terribly funny because she has a wonderful, and sometimes mischievous, sense of humor. Oh, and by the way, Alycia has Chronic Intestinal Pseudo Obstruction, a Broviac, a G-tube, and is soon to be listed for an intestinal transplant due to eminent liver failure. Not to sound cavalier, but this is the attitude with which we have tried to treat the journey that started when Alycia was 24 hours old and we realized there might be a problem. We simply do not think of her as a sick child, despite the challenges that come when your little girl or boy has medical issues. Life can be like a roller coaster, and you have got to recognize and appreciate the ups to help you get through the twists, the turns, and the downs. As my cousin told me when Alycia was about 10 days old, “Michael, you know why you are going to deal with this? Because it is there to be dealt with. Simple as that.” And so we have.
In the Beginning
When big sister Emily was born, she did not “poop” for 56 hours. (Parents with kids that do not have GI issues just don’t know how great a word “poop” is, do they?) We started hearing phrases like “motility disorder” and “Hirshprung’s Disease”. Well, right there on the Radiologist’s table that situation, shall we say, rectified itself, and home we went. Two years later when Stefanie was giving birth to Alycia, there was evidence of mecunium in the amniotic fluid, and so a Neonatologist was present at the delivery. No problem, we thought, at least we don’t have any GI issues to worry about like we did when Emily was born. This kid just can’t wait to make a bowel movement!
Alycia was transferred to Children’s National Medical Center in Washington, D.C. when she was three days old. She had surgery, but they found nothing wrong. “Don’t worry Mom and Dad, she will be fine in a few days.” A week later things were still not fine, and so we went to the Internet. We searched “Pediatric” and “Gastroenterology” and “Disorders”. Geeze, who knew there were so many. Finally we came to Chronic Intestinal Pseudo Obstruction and it seemed to fit everything that was happening to Alycia. Now, G-d knows I have an ego and am certain I’m always right, (want to take a guess how many arguments I win in my house living with 3 females? Yeah, that’s right, not too many!), but it was like a slap in the face when the Director of Pediatric Gastroenterology at Children’s told us a few days later that they had concluded Alycia has CIP. In went the Broviac, in went the G-Tube, and after a total of eight weeks in the hospital, she finally came home. We went back to the Internet and found out about great organizations such as the Oley Foundation and the American Pseudo-obstruction and Hirschprung Disease Society.
The Home Health Care agency nurse came by, laid out the supplies and started teaching us how to take care of our daughter, who was to be on TPN 18 hours a day. And I thought Algebra was hard! Tubes and flushes and alcohol pads and Mickey extenders and injection caps. Lipids and Op-Sites and gloves-OH MY! We have it all on videotape, except for the looks on our faces that would have shown two parents in a semi-state of shock. And then cousin Judy’s words came back… “You are going to deal with it, because it is there to be dealt with.” Stefanie shared such great words with our family and friends during a Naming Ceremony we had, also celebrating Alycia’s 1st birthday. She thanked G-d that if a little girl was going to be born with such problems, then it was good that she was born into a family that was able to handle it.
Getting on with Life
Alycia has had lots of problems, but so many more events in her life have been triumphs. She’s on her 4th Broviac and has been admitted into the hospital no less than 25 times in 4-1/2 years. She’s had over a dozen line infections, and almost broke the Maryland fever record when her temperature hit 106.6°F during one such event (not like we’re bragging or anything). When she was 14 months old she had an infection that sent her into septic shock, where she spent five days in critical condition on a ventilator in the PICU. And yet, less than 36 hours after having the breathing tube removed, we have pictures of her jumping up and down in her crib at the hospital. She had this huge smile on her face, and was happy as can be. We are sure she was wondering where Mommy and Daddy have been all week, and why they had all that gray hair so suddenly.
Alycia is happy, strong-willed, and despite things, does not think of herself as being “different” because we have tried not to treat her that way. During several trips to Ocean City, MD, Alycia used to sit in her stroller and watch her big sister go on the kiddie rides. During the summer of 2001, when she was not yet two, we put her onto one of those little cars that goes round and round in a small circle. The only thing brighter than the lights in the amusement park was the smile on Alycia’s face. And her smile also conveyed a message to us that we do occasionally need to be reminded of. “Mommy, Daddy, it’s not like I’m gonna BREAK!” You should see the way Alycia and her big sister wrestle with each other now. Emily is careful in regards to her Broviac, but Alycia can certainly hold her own. Alycia is on TPN for 11 to 12 hours each night at this point, which accounts for about 95 percent of her calories. She has a big tummy because of the “stuff” that accumulates in her intestinal track that her GI system just can not move down. On average of six nights per week, Alycia will throw up about three to five times a night; but usually in the middle of the night, which keeps us on our toes even when laying down. Obviously, she needs to wear a diaper at night because her infusion is 1900 cc’s at this point. But, when she was close to three years old, she decided, on her own, she wanted to wear underpants like her big sister. And so, in less than a week, she was potty trained. BOOM, she just did it. We figured she’d be eight before she got out of diapers, but this kid just decided what she wanted, and to our amazement, did it.
So Where Are We Now?
This past September Alycia had her gall bladder removed. During the operation they discovered her liver was being damaged by the otherwise life saving TPN. A followup biopsy December 31st showed she is in stage three liver failure. And so, this March Stefanie and Alycia went to Pittsburgh, 200 miles away, to be evaluated for intestinal transplant. A great transplant team from Mt. Sinai in New York has relocated here to D.C., but our insurance company has not recognized them yet and will not make an exception.
We always endeavor to tell our children the truth, and so we explained to Alycia about getting a new intestine, and that it would most likely mean getting off TPN and no more Broviac. She pondered that for a few moments. You could see the wheels spinning in her head about what it would mean to her. Finally, she looked at me and said, “Daddy, you mean I could get out of bed all by myself in the morning?”
Two nights later, we were talking about it again as she got ready to go to Pittsburgh. Four and a half years, all the clinic visits, all the hospitalizations, all the overheard discussions, the TPN, the Broviac, G-tubes, Pseudo Obstruction, motility disorders, IV’s, etc, etc, etc. Alycia looked at me and asked, “Daddy?”
To learn more about Alycia, her journey with Pseudo Obstruction and getting a transplant, visit her website.
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Feeding Tube Awareness Week
2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week