CONOR GUNN
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ON MARCH 27TH 1997, CONOR WAS BORN AFTER AN OBSCENELY EASY LABOUR AND DELIVERY AND AT 6 AND 1/2 LBS. WAS THE HEAVIEST AND HEALTHIEST OF OUR THREE CHILDREN (OR SO IT APPEARED!). 24 HOURS AFTER HE WAS BORN, CONOR WAS RUSHED TO THE CHILDRENS HOSPITAL WITH SEVERE BREATHING DIFFICULTIES AND WAS DIAGNOSED WITH BILATERAL VOCAL CORD PALSY WITH NO KNOWN CAUSE. A TRACHEOSTOMY WAS PERFORMED WHEN HE WAS JUST 6 DAYS OLD. WE WERE TOLD IT WAS AN EXTREMELY RARE CONDITION WITH ONLY A 50% CHANCE OF RECOVERY. NEEDLESS TO SAY WE WENT THROUGH ALL THE EMOTIONS OF ANY PARENT WHEN A CRISIS DEVELOPES WITH A CHILD: WHY US?, HOW WILL WE COPE? WHAT WILL THE FUTURE HOLD FOR CONOR?. CONOR CAME HOME AFTER A MONTH IN HOSPITAL WITH SUCTION MACHINES, CATHETERS, SPARE TUBES ETC. ETC. IN TOW. WE ARE PLEASED TO SAY WE ALL ADJUSTED TO OUR NEW ROUTINES VERY QUICKLY AND CARING FOR CONOR BECAME PART OF NORMAL DAY TO DAY LIFE.
IT WAS HOPED THAT CONOR WOULD BE DECANULATED IN EARLY AUGUST AS A LITTLE MOVEMENT ON HIS RIGHT VOCAL CORD HAD BEEN DETECTED. HOWEVER CONOR HAS DEVELOPED A GRANULOMA IN HIS TRACHEA DUE TO IRRITATION OF THE TRACHEOSTOMY TUBE AND REQUIRES LASER SURGERY TO REMOVE IT. DETAILS ARE A LITTLE VAGUE HERE AS TO WHEN THIS CAN BE PERFORMED (AND SUBSEQUENTLY DECANULATED). HE GOES BACK FOR ASSESSMENT IN OCTOBER SO FINGERS CROSSED!!!
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UPDATE: 30th NOVEMBER 1997
A VERY LARGE GRANULOMA WAS LASERED AWAY FROM CONOR'S TRACHEA IN MID OCTOBER. FOLLOWING SURGERY DECANULATION WAS ATTEMPTED AND FAILED IMMEDIATLY. WHY IT FAILED WAS NOT KNOWN BUT IT WAS THOUGHT TO BE DUE TO A NUMBER OF FACTORS SUCH AS POSSIBLE SWELLING IN THE AIRWAY FOLLOWING SURGERY, CONOR WAS NOT SUFFICIENTLY OVER THE SURGERY ETC.
IN THE SECOND WEEK OF NOVEMBER, CONOR WAS ADDMITTED TO HOSPITAL WITH A URTI AND ONCE OVER THIS HE WAS SCOPED. FROM THE SCOPE, IT WAS FELT THAT HIS AIRWAY LOOKED GOOD (NO FURTHER GRANULOMAS) AND AS HIS RIGHT VOCAL CORD APPERARED TO WORK, DECANULATION WAS TRIED AGAIN. INITIALLY CONOR SEEMED TO HAVE NO DIFFICULTIES BREATHING FOR THE FIRST TIME WITHOUT THE TUBE AND HE WAS OVERAWED BY THE SOUND OF HIS OWN VOICE (AS WERE HIS PARENTS!). HOWEVER , HE DEVELOPED A STRIDER THAT BECAME PROGRESSIVLY WORSE AND A NASAL SCOPE INDICATED THAT THE RIGHT VOCAL CORD WAS ONLY WORKING AT 50% (COMBINED WITH NO MOVEMENT ON THE LEFT ONE). 2 DAYS AFTER DECANULATION CONOR WAS BACK IN THEATRE TO HAVE A TRACHEOSTOMY PERFORMED ONCE AGAIN.
WE ARE UNCLEAR AS TO WHERE WE GO FROM HERE. IT IS HOPED THAT THE VOCAL CORDS WILL IMPROVE OVER TIME. IF NOT, THEN THERE ARE SEVERAL SURGICAL OPTIONS OPEN TO HIM IN THE FUTURE. THE SAGA CONTINUES!
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UPDATE: FEBRUARY 1999
March 1998
Conor had a scope which indicated that there could be enough movement on his vocal cords
to provide an adequate airway so another trial decannulation was planned for April
April 1998
Once again Conor's tube was removed and after initial difficulty he seemed to get the hang
of breathig on his own. But it was shortlived. After 36 hours he went into respitatory
distress and the poor kid was once again brought into theatre to have the tracheostomy put
back in. We couldn't understand why this was happening yet again. They scoped him while he
was in theatre and discovered that he had developed Tracheamalasia as a direct result of
having a plastic tube in his throat. The irony of it all - the tracheostomy that had saved
his life had caued him serious airway problems . We were told that he would need major
laryngeal recstruction (Laryngeoplasty) to correct this weakness.
The problem facing his surgeon was that he didn't want to perform this surgery unless he knew for definite that his cords were moving enough to give him an adequate airway. The only way to test the vocal cords was to decannulate, which was failing due to the Tracheamalasia. It appeared to be a "catch 22". We were told to go away and have a break and a holiday and Conor would be reviewed in July.
July1998
Conor had a Scope under GA and a flexible nasal scope and his surgeon said that he
honestly could not be certain that his cords would provide an adequate airway if he
performed the single graft to correct the Tracheamalasia only. His thoughts at this stage
that the best option for Conor would be to open up the airway at the back of the vocal
cords and support it with a second rib graft. We were devastated at the news. He also
suggested (as a last resort) to try capping Conor at home to see if he could tolerate it
to any degree.
August 1998
We tried capping Conor's tracheostomy at home. After a couple of days it became quite
apparent that Conor was well able for this. After a week or so, Conor managed all his
waking hours capped and even fed much better capped!
I contacted the ENT team who were amazed. Conor was brought into hospital where he was capped and the entire area around the stoma was sealed off to become airtight and monitored closely day and night for 5 days. He did brilliantly and we were thrilled. This meant that his vocal cords were able to open enough for him to breath adequatly . Surgery was planned for November and would entail one single graft of rib cartilidge to repair the tracheamalasia.
November1998
Conor had his reconstruction on November 25th. The operation went well but we had to wait
a full week before he was scoped to see if the graft had taken or not (80% of grafts do
take we were told). For that week, Conor was kept asleep in the ICU.
After his scope, it was discovered that although the graft had taken, Conor had severe swelling in his airway from being intubated. A smaller ET tube was put in, in the hope that the swelling would go down.
After another week of waiting Conor was back to theatre for another scope. It was discovered that he still had swelling in the airway. His surgeon lasered away some of the swollen tissue, an even smaller ET tube was put in and steroids were added to his concoction of drugs. Everyone was getting very worried at the stage. He had to be extubated soon or he could develope more airway problems (stenosis etc) but his airway was still too swollen to extubate!
Finally "E"(extubation) day arrived. The tube was pulled and for 48 hours Conor struggled severely with his breathing. He pulled through it with the help of adrenalin nebs (hourly at one stage), and the persistance and sheer determination of his anethetist who sat him up an his knee and up-ended him with aggressive physio to keep his secretions clear and avoid a build up on his chest.
Conor finally came home 4 weeks to the day after his surgery and the date was Dec 23rd. This was the best Christmas present we could have asked for.
We are eternally grateful to his surgeon Mr. Russel and his anethetist Dr. Claffy who have looked after him since he was 24 hours old and finally got him off the tracheostomy. Although we live in quite a small country, I have no doubt that the skills of these two Drs are among the best in the world but their dedication to Conor (and their other airway patients) has to be second to none.
February 1999
Conor had a scope to check the graft (he had had to have laser surgery in January to
remove some granulation tissue) and we received some unreal news. the graft has completely
healed, his airway is narrow for a kid of his age but should be fine. No more scopes are
planned for Conor. We just have to bring him to out patients in a month! Can this really
be the end of it? If everything goes fine for the next 6 months, we might just believe it!
- YOU CAN EMAIL DEREK AND ALICE GUNN AT "DEREKG@IOL.IE"
