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Tuesday, December 30, 2008 6:03 PM EST

Tyson's story to July 2003 is now in the Journal.

We have also added a few more pictures to the photo album - make sure you check them out - they are very cute!

Tuesday, December 2, 2003 4:00 AM CST

Introduction
Because of cord entanglement Tyson and his identical twin Maximus were delivered by C-Section at 30 weeks – (it wasn’t safe to leave them in utero any longer those cords looked like macramé!). They were born in Brisbane Australia on January 10th 2002 they weighed 2lb:15 and 2lb:13.

The boys were admitted to the NICU and within 2 days graduated to the Special Care Nursery. They were doing so well that Medical staff were even talking imminent discharge.

Problems!
However, within about three weeks they both began to have breathing difficulties, and our roller coaster ride began. Initially diagnosed as having Chronic Lung Disease, the boys conditioned worsened and the diagnosis kept changing, a few of the conditions that we were told they had was Chronic Lung Disease, Asthma, Respiratory Distress of Unknown Origins and so on.

Meanwhile respiratory support varied almost daily - the boys had nasal O2 cannulas, CPAP, BIPAP and finally were intubated with full vent support.

So many times we stood helplessly by watching the ICU team spring into action to resuscitate them it was both terrifying and frustrating, here was these two guys fighting to breathe and we were unable to do anything to help!

Diagnosis
The boys were moved to the Brisbane Royal Children's Hospital Intensive Care Unit at about 5 months old. On admission they had a bronchoscopy and a battery of other tests that gave us the following definite diagnoses:

· Severe Tracheo/Broncho Malacia,
· Gastric reflux causing aspiration
· Hyper IGM Immune Disorder
· Optic nerve hypoplasia
· (Tyson has also recently been tentatively diagnosed as having NF1 (Neurofibromatosis).

These were all very scary things to hear and to top things off we were told that likely outcomes would be that boys may be deaf, blind or both. This particular combination of disorders and the fact that Max and Tyson have a variation of the Hyper IGM that has never been seen before means that a whole lot of medical research and writing has happened and it looks like there will be a ‘syndrome’ named after Max and Tyson. However, this is something that we hope no other parent or family member ever hears as a diagnosis.

Soon after they were diagnosed, Max and Tyson had tracheostomies and gastrostomies put in place, had fundoplications done and were began having monthly transfusions of intragam to reduce the risk of infection.

You said we can’t do what?? – We will show you!

As they grew Max and Tyson began to exceed all expectations and appeared to be out to prove all the Dr’s wrong. They were responsive happy and active little guys who even with all the trauma they had endured, always managed to give a beautiful big grin to anyone lucky enough to meet them. They even began to sit up unaided.

Eventually the boys were moved to a ward, but still had Intensive care nursing. On their first Birthday they had come along so far that they even got to go outdoors and enjoy the sun (and birthday cake). It was an amazing and moving moment when I saw Mum proudly walking out the hospital doors with the boys in their pram wearing their ‘Bob the Builder’ sunhats. (See the photo album).

Tragedy
In February 2003 an ‘accident’ occurred in the ward – (legal proceedings are pending which means I cannot say to much here) which resulted in Max cardiac arresting and being left without oxygen for between “12 and 36 minutes”. After much effort he was resuscitated but the whole ordeal left our little fighter with a very severe brain injury.

As a result of the injury wee Max lost his battle with life on Tuesday July 22nd 2003. As a family we decided to let Max choose whether he had the strength to struggle on or to whether to let go and move on to be a beautiful angel free of the pain and bounds of his earthly body. Max was decannulated and peacefully passed away one hour later.

I think Max was already an angel when he was born - sent to touch the hearts of so many and to affect the life of everyone he ever met - each in a way specific to them. It is such an honour to have had him sent to me as a grandchild even if for such a little while.


Thank you so much for reading this lengthy intro – you might not believe it but this is the abridged version of events! Tyson’s story will continue in new Journal entries.

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