~Updates~

*Please note updates will appear with the most recent at the top.

October 03 - May 04

Well our review went according to plan, or so we thought.  We came home with another 6 month break until our Cardiologist rang to say after checking results he had discovered an extra beat in Jayden's lower chamber.  He wanted Jayden to have a 24 hour Halter Monitor on to see how often this was happening.

The Halter showed this extra beat was quite often over 24 hours.  In HLHS this can be very serious

Jayden was Admitted to RCH for a cardia catheter.  The results were nothing unexpected, although his right ventricle function was down.  Jayden stayed to have 2 new medications started to regulate the beat.  We ended up staying 12 days.  The highlight for Jayden was meeting country singers, Kasey Chambers and Bekky Cole who were visiting Ronald McDonald house and 7 west.

The new medication is working and Jayden is now back to more regular visits.  He is ready to start school.  We had decided on a smaller school. (Ardmona Primary School)  The first day was both exciting and nerve racking, but there were no tears....

Our check up went well and we have again increased the medication.  It is doing it's job and there has been no irregular beats.  The right ventricle function is still down.  This poor function makes him too risky for the Fontan so we have to wait and see.  The Cardiologist does not think the function will improve but we have to give it a chance to.  He loves school and seems to have settled in well.  Although he gets tired at the end of each day.  The teachers have been fantastic to his individual needs, abilities and restrictions.  The other kids are great too.  with a school of 35 kids they all know him.  They are even getting used to his 'blue' days.  As for RCH we are playing it one day at a time with our next check up in July.

April 2003

Jayden has started kindergarten this year and he is really enjoying it.  He gets tired but more so later in the day and quite often the following day.  His teachers have been both understanding and supportive which has been a big relief for John and myself.  It was a little frightening leaving him for that length of time (5hours) with someone who had never even heard of Hypoplastic Left Heart Syndrome.  But a few sessions later and we were all confident.

His 5th birthday on the 4/3/03 was busy with a party at kinder and many visitors afterwards.  Then onto a family tea at Gran and Grandpas house.  He slept well that night.  A review at RCH on the 8/4/03 went well.  Our previous check up last October showed Jayden's oxygen was a little low (in the mid 70's), we were booked in for an exercise test with this review and pending the outcome a possible catheter.  But Jayden's oxygen was back in the 80's.  He coped well with the treadmill and all other tests had good results as well.  So the catheter is now on the back burner.  We all know that eventually the Fontan will happen but for now it is not on our cards and we are home for another 6 months until our next review in October.

Cheryl Alexander.