Jack Riley Gardellini
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Jack Riley Gardellini
Born 10th September 2002
Jack Riley was born 8 weeks premature via a emergency c-section due to Polyhydramnios and a
fetal bradycardia.
When Jack was born his Apgar scores were 1 then 4. He was intubated at birth, as he was not breathing at all. Jack was ventilated at birth and was taken to the
N.I.C.U. Jack was very floppy & weak, he couldn't open his little eyes or close his mouth. But, within a few weeks he was slowly gaining some
strength. He began to open his eyes & move his arms, make facial expressions when he was upset. We were so worried as we did not know what was wrong with him and the doctors were not encouraging at all.
At 10 days old, Jack was diagnosed with X-Linked Myotubular Myopathy. A rare genetic muscle condition that affects boys at birth. Our hearts broke as we were told he would never get better and there was no cure. We were also told to make a decision for Jack if he failed off the ventilator when he reached term. We had to make a decision on "How too or how not to care him" these were the exact words that were put to us. We had to find out more information on this condition as the hospital's information was outdated and we simply could not believe what we were told as Jack was slowly gaining strength.
After a hard and emotional 5 weeks, Jack was weaned off the ventilator onto CPAP, which was delivered via a nasal pharyngeal tube. He was then moved to the P.I.C.U for long-term management and within weeks Jacks pressures were weaned to a minimum of 5.
We had talked about a tracheostomy with the doctors and they had no intention on giving him one in the foreseeable future.
Jack was 3 months old when he was trailed him off the CPAP a few times, but he failed to gain weight, the doctors decided to leave him on
continuous support as they were hoping within time that Jack would gain enough strength to breathe on his own.
Jack had problems with aspirating his feeds from the day they took the Endotracheal tube out and had been continuously fed via a nasal gastric tube,
which stopped his aspirating. At 4 months he had a nissens and G-tube placed and begun 2 hourly feeds for the first time.
A few weeks before Jack had his tracheostomy placed, he had a few more attempts breathing on his own and it became apparent his secretions were a major factor
as to why he couldn't sustain his breathing; he cannot swallow.
We pushed for the Tracheostomy in the end as it we couldn't see him being able to breath on his own in the near future. We also wanted Jack to have freedom to explore his world without the tube up his little nose that impeded him from doing a lot of things, especially exploring with his mouth.
Jack had his trachy placed in June 2003 aged 9 months. He had a few problems after surgery and it seemed as though we made the worst decision for him.
Now he has been sprinting off the CPAP for 10 hours straight a day. Although these are early days we are hoping he will be able to continue to grow and thrive whilst he is finally able to breath for himself during the day.
We are hoping to have Jack home within a few months, this will be the biggest challenge we will have to face as we do not receive home nursing here in Australia
and only very small amounts of home assistance is provided. However, we remain positive that we will be able to cope and hopefully lead a relatively normal life.
This site has provided great information and the members on the message boards are fantastic and are very supportive.
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Gardellini Family
