Paul Millard-Smith’s Story
Paul Millard-Smith
Parents Name:Michelle Millard Smith
Childs Age: Born 2nd of September 1988
Childs Condition: Pulmonary Atresia/MAPCAS/VSD
Story:
I am writing this letter in regards to my son Paul Millard-Smith having been nominated for a lion’s bravery award.
This is a brief account of Pauls story:
Paul was born on the 2nd of September 1988 ten weeks premature with a heart condition called Pulmonary Atresia/MAPCAS/VSD. The condition at the time was diagnosed to be terminal and the doctors didn’t expect that he would have more than 12 months to two years at the time of his birth. He spent the first three months of his life in PMH due to his heart condition and prematurity.
After going home Paul was nasal gastric fed and on home oxygen until he was eight months old. During his first 16months Paul was in and out of PMH frequently three times with pneumonia and once with rsv.
In March of 2000 Paul went to Melbourne for his first surgery a thoracotomy, all went well and Paul returned home after three weeks.
At approx. the end of 2000 Paul went back to Melbourne for another thoracotomy this visit also went well and Paul was home after a couple of weeks.
In August of 2002, Paul once again returned to Melbourne for planned open heart surgery to graft on a conduit. His first surgery was on the 4th of August he had a conduit grafted on. In ICU both of his lungs collapsed and he was CPAPED and put on nitrous oxide. The next morning the doctors came to tell me the conduit medium had grown a bug. 48 hrs later the bug was identified as pseudomonas. From about day 4 Paul became ill and spiked a fever. Paul was moved back to ward 7 after about 10days where he remained very ill.
On the 20th of August, the physio came to see Paul. His oxygen had just been weaned down a litre overnight but he was still on oxygen. I asked the physio not to make Paul walk as his temp was 40 and he was very unwell. That shift the nurse on had refused to give Paul Panadol as he believed Panadol shouldn’t be used.
The physio wouldn’t listen to me and made Paul walk from one end of the ward out to the lifts and back again. Finally half way back I couldn’t handle Paul being so shattered and distressed from having been made to walk so sick, so I picked him up and carried him back to bed. The other thing the physio had done was to take Paul off oxygen for the walk. I had asked her to get some portable oxygen but she just shrugged me off and said that he didn’t need it.
Paul was exhausted and so sick for over 16 days he had a constant high fever and he just lied in bed with no energy.
An hour and a half later a Dr came to see Paul and while examining him, he started to make funny noises and full backwards onto the bed. The Dr didn’t know immediately what was going on, but after probably a minute between us we decided to call for help. A code blue was called and staff came in with the trolley and ICU came up. Paul had gone into cardiac arrest. It took the team approx. 15mins or so to resuscitate Paul and he was taken down to ICU where he went into cardiac arrest again. After maybe an hour they had stabilised Paul and then took him for a cat scan which showed fluid on the heart. The surgeon told me he had to go back into surgery or he wouldn’t survive but his chances of surviving the surgery where not great either. Basically a no win situation but they had to try surgery. Paul went back in and they opened up his chest, but didn’t identify fluid as being the cause of his heart failure. They afterwards told me the fluid they had found was consistent with the pressure of the CPR on his chest so soon after his initial surgery. They cleaned his chest and took swabs. Back to ICU where his vitals stabilised and his temp dropped.
But two days later the fever was back, the cause of his arrest was thought to have been due to the infection and the toll it had taken on his body. As well during the next week, pseudomonas was grown in the lab from the surgery swabs as well it was growing on his lines. So he was put on an almost last resort top shelf antibiotic. Paul after a week was moved back to ward 7 where he remained with a high fever and very sick.
After an echo on the 1st September it was found that his conduit was rupturing from the infection. At 6pm that night he was taken back into theatre to put a conduit in for the 2nd time. I remember sitting with the surgeon in the empty cafeteria signing the consent form and hearing the helicopter coming in with an emergency conduit for Paul. It was too big but the surgeon was going to band it to make it the right size. Paul came out of surgery and back into ICU at 2am on the 2nd of September it was his fourth birthday.
On this occasion Paul only spent a few days in ICU before going back to ward seven. Finally with a new conduit, Paul slowly recovered but needed a further seven weeks in hospital on IV antibiotics. On the 20th of September he was flown back to Perth with a nurse escort to PMH where he spent four weeks and finally on the 20th of October Paul was allowed to go home after three months in hospital.
I would like to say the PMH is the best hospital and the staff are very caring and professional. And Paul’s surgeon Christian Brizzard is in my opinion the most fantastic doctor in the world. He has done amazing things for Paul and has taken Paul from palliative care to now having a chance to close the VSD.
Paul is the bravest most wonderful little boy I know. He has been through more in his little life than anyone else I know and he never complains he just takes it all in his stride. He is the most special person I have ever been privileged to know and I am so very proud of him.
In the next few months Paul is going back to Melbourne to replace the conduit again as he has outgrown it and no-one is sure as yet whether they can close the hole or if he will have to go back another time.
Paul is going to preschool at the moment and his best friend is Logan. And he absolutely loves school, he obviously has limitations but you would never know this to look at him. He is living a normal-ish life and he has a love of living. All and all Paul is simply just a wonderful special little boy.
With thanks
Michelle Millard Smith (Paul’s mum)