UPDATE  

25 Nov 09

After 29 days (26 of which were in PICU) at RCH Tom was finally discharged at 7pm. He was audibly excited when he was in the car coming home and squealed when the car pulled into our driveway!!! On his way out of the hospital Tom visited Jett whom he became friends with when they were room mates at RWH last year. Go Jett!!! We hope you are home soon!

22 Nov 09

Tom was moved from Intensive Care to a high dependency room on the 5th floor today. The room has 1 nurse for 2 patients rather than the normal wards which have 1 nurse for 4 patients. They still have to wean him off a few oral drugs and make sure he is remains stable before they will let him come home. Tom continues to amaze us as his is opening his mouth and letting us put food in it... That mind blocking drug he was on for the last month is awesome!!! Tom will be reviewed by the ENT specialist tomorrow where it will be decided if he needs to go to theatre to find out where his cry has gone to as it is very "breathy" and weak, in which case we may be back in ICU tomorrow.....!!!

19 Nov 09

Tom is still in ICU, but appears to be far more stable. We are still concerned about his neurological state but the doctors do not appear worried about our concerns. He is on a CPAP of 5 in 35% O2 which we never achieved at RWH!!!!! The Morphine and Midazalam are slowly being reduced and we are hoping that they will be removed in the next few days. Tom now only has 1 IV site so his feet are free, though his arms have been strapped because his is a little 'sh&t' and is trying to pull his tubes and lines out!!! It does make Mummy very sad to look at Tom's heels which are being pricked twice a day for blood gases...poor Tom Tom!

14 Nov 09

Tom is more settled which is due to his improved health and the drugs he is on. His secretions appear to be less and his lungs seem clearer. The plan is to wean him off CPAP slowly, then wean him of his drugs, which has been a challenge so far. Poor little boy likes his morph and midazalam, and he was none to impressed when the midazalam dose was reduced last night. Needless to say, it was increased back to where it was and the Dr's decided to ask the pain team for assistance to wean the drugs!

12 Nov 09

After a long day waiting for results on an EEG (brain scan) on Tom, our boy came back to us. Some concerns were raised this morning that Tom may be having seizures due to hypoxia of the brain. Thankfully we were given the 95% all clear this afternoon. Tom's symptoms have been attributed to withdrawl symptoms from weaning him off his drugs. It would appear our baby boy has a very high tolerance to drugs and requires the dose it takes to knock out a race horse to keep him asleep! Tonight, after 16 days of being fully sedated,Tom 'woke up' and started to blow raspberries, babble and "wave" his arms and legs about. Whilst we were thrilled to see the Tom we are used to, his nurse was concerned that his lines and nasal tube would be dislodged by our naughty boy! A good dose of chloral (sleeping potion) was given but as we left the ICU 40 minutes later,Tom was still wide awake!

9 Nov 09

Tom was taken off the ventilator late in this afternoon and was put onto the CPAP machine. Unlike the ventilator CPAP doesn't do the breathing for him, it just provides positive pressure in his lungs so the it's not so hard for Tom to get a full breath of oxygen into his lungs. We have been warned that he may get too tired and need to be put back on the ventilator until he builds up his strength, when they will try CPAP again! He is still on sedating drugs but much lower doses so Tom is having awake times but he is not interacting with anyone.

Tom showed signs on Sunday 25th Oct that he was getting a bug. We took him to see his GP on Monday 26th Oct and he was put on antibiotics. Tom remained stable until just before his follow up GP appointment on Wednesday 28th October when his oxygen requirements quickly increased to 2 litres. Jen and I decided it was time for a visit to the ED at RCH. Tom was taken straight to a cubicle where doctors swarmed and he was soon admitted to PICU. Thursday saw Tom really struggling with his breathing and at 5pm we were notified that they needed to put Tom on a ventilator as he was not getting any air entry into his lungs. Tom has been in an induced 'sleep' ever since.

It's been a long journey since then for Tom with very high fevers (41.7), but true to form our little champion is fighting hard. The medical team have started to slowly reduce the support of the ventilator and his drugs and are hopefully going to take Tom off the ventilator in a few days (although he was only ever supposed to be on it for 3-4 days).

The Herald Sun visited PICU to do an article on 24hrs in PICU which was published on Sat 7 November. We were asked if Tom could be included, hence the beautiful picture above.

Click here to view the article

Click here to view the pictures from the article. Some people may find some of the picture upsetting.

We'd like to thank all our family and friends for their support. It's been a very trying time and without the love and support around us we wouldn't be coping quite so well. And thank you for the balloons which have arrived and made Tom's space nicer and the meals so that we don't dine on take-away - you have no idea how much this helps us and how much we appreciate it!