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UMass Memorial Neonatal unit turns 40

Telegram & Gazette Sept 14, 2014

Registered nurse Lynn Ellsworth of North Grafton plays with her former patient, Luke Goyette, 11 months, of Millbury during the UMass Memorial Neonatal Intensive Care Unit's 40th anniversary celebration Saturday. (T&G Staff/PAUL KAPTEYN)
Registered nurse Lynn Ellsworth of North Grafton plays with her former patient, Luke Goyette, 11 months, of Millbury during the UMass Memorial Neonatal Intensive Care Unit’s 40th anniversary celebration Saturday. (T&G Staff/PAUL KAPTEYN)

By Michael Gelbwasser CORRESPONDENT

WORCESTER — Aaron Bissell spent his infancy fighting for survival in the UMass Memorial Neonatal Intensive Care Unit. Now, 21 years later, “I’m well. I’m doing a lot of writing. And I take singing lessons. I pretty much do a lot of creative stuff,” said Mr. Bissell, of Grafton.

The neonatal intensive care unit’s 40th birthday was celebrated Saturday at the UMass Memorial Medical Center — University Campus, 55 Lake Ave. North. Numerous former patients of all ages gathered for a group photo on the front lawn.

The festivities celebrated “all the families that were able to have their children come home with them,” to remember the children “that left this world, frankly, too soon,” and to thank the families for letting the doctors and nurses “care for their children,” said Dr. Alan Picarillo, the UMass Memorial Medical Center’s chief of neonatology.

“It was a total privilege of caring for these children,” he said. “These families would leave them with us for long periods of time.”

The unit has cared for more than 20,000 infants since opening in 1974 with six beds, hospital officials said. The program now has 49 beds. Aaron Bissell and his twin brother Eric, born at 26 weeks, were treated “at the old NICU, over at Memorial Hospital,” in 1993, according to their mother, Cynthia.

“I can tell you, the first couple of years, both of the boys were very medically fragile. It was totally scary,” she said. “I’m a nurse, so I knew the risks involved in twins being born 3 1/2 months too soon.”

“I really came here today to thank some of the doctors. I remember all of them,” Mrs. Bissell added.

Dr. Picarillo said “the caring of the front-line staff” has been the one constant during the unit’s 40-year history.

“The amount of time they spend with the families, comforting them, encouraging them, empowering them. That’s what hasn’t changed,” he said.

Dr. Picarillo noted that infants brought to the unit are living longer than ever.

“In 1974, typically under 28 weeks wouldn’t survive at all. Now, we routinely save babies with 23 weeks,” he said.

Triplets Jameson, Payton and Callie Kaska of Northbridge are now 3 years old, said their mother, Lindsay. Their earliest days were “an emotional roller-coaster ride, living day to day,” Mrs. Kaska said. Now, the kids “are amazing. They’re right on target. They’re healthy,” she said.

Many families and staff reconnected on Saturday. Nurse Christina Evans was especially proud of Edward Parker Gagne, 4, of Holden.

“This little guy was one of my first babies I cared for,” said Ms. Evans, who has worked in the unit for 14 years. “To see him where he is today brings tears to my eyes.”

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Anthony’s Smile

smile

Here is the smile we’ve all been waiting for! Thank you all for your kind words of support, which came primarily via Facebook. After reading some of your comments, I realized how depressing Anthony’s medical history sounds. Yes, he has had some difficult times, but really, he has only had four serious medical issues in his 21 years, which is really good for a kid with such severe cerebral palsy.

Obviously, the abuse that caused his disability to begin with was his first challenge. That was back in 1994. His birth mom was mentally ill and abusive. We don’t know who Anthony’s birth father was, not sure his mother even knew. Anthony was placed in foster care at 17 months of age and then he joined our family in 2000. It was amazing how easily Anthony fit into our family and he had many happy years with no medical problems.

In spite of his disability – or perhaps because of it – he is the happiest kid you’d ever meet. He loves people, he enjoys being out and about. He loved school when he was able to go and his smile can light up a room, as you can see by the photo above. He is currently a favorite here in the ICU at UMass.

His other three medical problems were mention in the previous post: 2006 spinal fusion, 2010 intestinal volvulus / J-tube and 2014 pneumonia / tracheostomy. Between these times, he was happy and for the most part healthy.

Although doing the laryngotracheal separation was a difficult decision, as long as Anthony recovers and gets back to his typical happy self, it’s well worth the risk, because his quality of life will be much better. Nothing is more important than being able to breathe easily. Breathing is good.

Anthony’s Airway

Anthony has never had a very good airway. When he first joined our family in 2000, I remember listening to him snore while sleeping and thinking he may need a tracheostomy some day. But we managed his airway with positioning, occasional oral suctioning and Anthony’s nice strong cough. Even though he did sometimes have trouble handling his own saliva, he was always able to clear his lungs with a cough.

In 2006, he had a spinal fusion (lots of posts about this surgery if you search some of the earliest posts on this blog). The fusion was for his scoliosis and the surgery was very successful. His orthopedic surgeon was very happy with his nice straight spine. Problem is that the surgery and/or straightening seemed to make his gastric reflux worse. Maybe his old fundoplication unwrapped or just having a straighter esophagus was enough to bring stomach content up to the back of his throat. Again, his strong cough helped, but over time, it got harder and harder for him to tolerate his G-tube feedings.

In 2010 we decided to switch out his Mic-Key button (G-tube) for a GJ-tube. This is a longer tube that is threaded via the g-tube opening through the stomach and into the jejunum (first part of the small intestine). With a GJ-tube, feedings and/or medications can be given in the stomach or small intestine. Feeding via the small intestine greatly improved his reflux and things went well for a while, until one morning when there was blood coming out of his tube. We took him to the ER and long story short, he had an intestinal volvulus (also documented in this blog). This was an emergency surgery situation that required a bowel resection.

Eventually, he had another surgery to place a separate J-tube below – or down-stream from – the bowel resection. During this very long recovery he came close to having a tracheostomy because his airway was floppy and his tongue was sometimes blocking his airway. But once he was fully recovered his airway improved. Not great, but also not to the point of needing a trach.

Fast forward four years…Rich and I decided to take a vacation, just the two of us. Anthony and Natasha went to a skilled pediatric facility, Eric went to a respite house and Aaron went to Auntie Joyce’s house. This involved lots of work and coordination in order to get away, but we had a wonderful week in the Turks and Caicos.

The day after we got home, we got a call from the nursing center saying Anthony had a gagging episode and had aspirated. He was transferred to Lowell General Hospital where they wanted to admit him, but we had him transferred to UMass Memorial University Campus. He was obviously sick, but we were able to take him home on antibiotics. But he was not improving and his lungs and airway were in bad shape. He ended up being admitted to the ICU and placed on a ventilator.

After a week in the hospital he came home, but his airway was just not getting better. It was very hard to watch him struggle to breathe. He had to be positioned very carefully in order to maintain a decent airway. It was time to revisit the tracheostomy.

We had him readmitted because again he was not improving and we had an ENT (otolaryngology) evaluation as it seemed that a tracheostomy could no longer be avoided. After much research and consultations with Anthony’s doctors, we decided that the best option for Anthony would be a laryngotracheal separation rather than just a tracheostomy. This was a more involved surgery but would help Anthony with several of his problems: mechanical airway obstruction (big tongue) and sleep apnea that went along with his obstruction, chronic aspiration of saliva and reflux which was still a problem because of normal stomach acids.

laryngotracheal-separation

A laryngotracheal separation is different from a regular tracheostomy because rather than just placing a trach tube in the airway, the trachea (wind pipe) is actually disconnected from the upper airway. The trachea is separated and the upper portion is stitched closed and the lower portion is brought out and sutured to the neck, so that he is a total neck breather. This means that the nose and mouth are completely cut off from his lungs leaving no way for saliva or stomach acids to get into his lungs.

anthony

On Wednesday August 6, 2014 Anthony had his laryngotracheal separation. He is currently in the ICU at UMass/Memorial. He was initially on a ventilator post-operatively, but they were able to wean him off the vent within 24 hours. It is such a relief to see him breathing easily!

anthony2

More updates coming soon…