Well it has been a long, long time since the last update. We have had several emails from regular visitors wondering what has been happening over the last while. There have been numerous reasons why we deliberately did not post an update, however, we can now report on the many exciting developments over the last three months.

Here is the summary...

• We made a decision to turn off Ruth BiPAP in the middle of last September.
• Two weeks later we removed all of her equipment form her bedroom.
• Downsizing of her tracheotomy tube continued at a pace and
• On November 19th Ruth's tracheotomy tube was decanulated.

So..As you can imagine it has been quite a busy period!

In the last update in September we mentioned that we were having a lot of problems at night time. Ruth was waking up most nights, confused, frustrated, annoyed, distressed etc. Around the same time we also came to the conclusion that the effectiveness of her humidification was questionable. Everything seemed to be in order. Her humidifier seemed in perfect order. Temperature settings were correctly, and water was being consumed. However, for some strange reason, Ruth was waking up with very dry cough and clearly uncomfortable. To be honest we had no idea what was going on - our only guess was that as her trachy tube was progressive downsized, the magnitude of her airway leak increased, and perhaps this caused effective delivery of humidification to be diminished.

Ruth would fight with us when we attempted to reconnect the airway circuit .... but then get distressed when we told her she did not need to have it... and offered to turn it off...she though she was being punished. It was a bit of a vicious circle that would take place over a 20-50 minutes, night after night. In the end we came to the conclusion that she no longer needed or indeed wanted her machines and that whatever was going wrong with her humidification - it was all more of a hindrance rather than a help - she may as well have breathing the air from the outlet of a fan heater.

Breaking the vicious circle and indeed a habit that has been a central part of Ruth's routine was and routine of her life was going be a challenge.

In the end we decided to go for a big bang approach. I let her fall into a deep sleep in my arms before putting her to bed on night. She was then transferred to her bed with no machines. Although she woke quite panicked in the middle of the night looking for her machines she was easily reassured. The following day she was clearly very tired and slept for hours! The following night she was clearly working a little harder andoccasionally woke up looking for her machines... again she was easily reassured

This was a source of great encouragement to us. The last time we tried to withdraw her machine she ran out of puff at about 4am. As each day passed we became more and more confident that we would not have to take a step backwards.

By day five we told her that we were organising to give her machine back to the hospital to help other sick babies get better. This was anidea she really latched on to. A pseudo trip to the hospital was organised. The next day while she was out, her bedroom was transformed - fresh paint, new bed & bedclothes, curtains. Every trace of her old machines, equipment and supplies were removed. And that was the end of that.

With her machine dispensed with the downsizing her trachy tube progressed with a little more earnest. By early November she was down to a 3.0mm tube. We had come to the conclusion that it was more of an obstruction in her airway than anything else!. When she coughed, some secretions would pass through the tube, some would not...stimulating further coughing... so so mundane coughing events turned into protacted coughing fits...lasting minutes. We advised Temple Street of her view and so she was scheduled to have her airway visually checked and have her trachy decanulated on November 11th. While the airway inspection was carried out, she had a chest infection at the time and it was felt she not well enough to take out the tube on the day. Decanulation was postponed for another week. So, it was not until November 18th that she was finally admitted to have trachy was taken out for the last time. She was kept in over night for monitoring and discharged the following morning.

She found the initial period of adjustment quite hard. She was still trying to breathe and cough through her trachy tube. Her stoma site was not stitched, so she had quite a considerable airway leak. She also got a check infection a short while later which brought lots more secretions that did not help matters.

One month later she is fine. Her stoma site has not closed completed and it is quite possible that she may need to head back in to Temple Street to get it stitched, although we are trying to avoid this if possible.

So after almost four years Ruth's medical needs are finally coming to close.

• Jan 2001 - Born with large Exomphalus and accompanying CLD. Ventilated form day 4. Attempts to reduce/repair defect fail. Conservative approach adopted.
• Dec 2001 - Discharged home on BiPAP after 11 months.
• Jun 2003 - Initial closure surgery
• Dec 2003 - NG feeding stopped
• Aug 2004 - Final closure surgery
• Sep 2004 - BiPAP weaned
• Nov 2004 - Tracheostomy Decanulated

Some of the events over the last few months have demonstrated that Ruths has psychological scares from her experiences over the last four hears. She will be attending play therapy in Temple Street in an attempted to address these issues in the new year.

For now she is just beside herself with excitement waiting for Santa Clause and so as 2004 draws to a close we are looking forward to new beginnings.

Wishing you all a happy, restful, enjoyable Christmas and brighter, better, more successful 2005