Dear friends
Ollie is off from the ventilator and breathing on his own.
He was awake last night spoke to Annett and went back
to sleep
After a rather 'difficult' night he was back to his inquisitive
self
, demanding answers from people in English,
German
and Afrikaans.... NOW !!!
They
are considering to move him out of ICU
and
to high care in a couple of hours.
He is out of the woods, and things are looking very good.
Good luck to the nursing staff in high care, Ollie is coming.......
Friday, 25 August 2017
Thursday, 24 August 2017
Finally... the wait is over
With a great relief and gratitude I am glad to post this :
Ollie is out of theatre and it went VERY well. He is currently on
a ventilator but stats are good.
In the operation the Glenn Shunt went perfect, but they could not completely
repair the heart valve. Thing are looking good. Oxygen is up from 81% - 93%
They also removed one of the bands from one of the arteries.
We can expect to have him to his normal active state soon.....
then we are going to battle to keep up with him !!!!!! Ollie Upgraded !!!!!
Thank YOU for looking after our little Ollie.
Warm regards
Ollie is out of theatre and it went VERY well. He is currently on
a ventilator but stats are good.
In the operation the Glenn Shunt went perfect, but they could not completely
repair the heart valve. Thing are looking good. Oxygen is up from 81% - 93%
They also removed one of the bands from one of the arteries.
We can expect to have him to his normal active state soon.....
then we are going to battle to keep up with him !!!!!! Ollie Upgraded !!!!!
Thank YOU for looking after our little Ollie.
Warm regards
Waiting....waiting
Dear friends
Patience is definitely not one of my virtues...;->
Ollie went into theatre a bit later than was planned.
Thus no new news yet......
We expect to hear from Henry and Annett late this afternoon.
This waiting is driving us mad...
Will keep you posted
Patience is definitely not one of my virtues...;->
Ollie went into theatre a bit later than was planned.
Thus no new news yet......
We expect to hear from Henry and Annett late this afternoon.
This waiting is driving us mad...
Will keep you posted
Wednesday, 23 August 2017
The time is now (update)
Just received word, Ollie is to be operated at 8:30 UK time, thus 9:30 RSA.
The time is here
Dear friends
I am writing this post on behalf of my brother. The time has arrived.
Ollie is currently booked into the hospital and he is scheduled to be
operated on tomorrow at 8:30. I dont know if this is 8:30 RSA time or Uk time
which is 1 hour behind us.
According to communication Ollie is going to receive the Glenn Shunt
and the valve repair on the heart is to be done.
This is all that I know now, and the family is with Ollie at the hospital without wifi.
This is an emotional time for us all..... But we trust in Him who gives us strength.
Jaco
PS
( Please forgive the grammar and spelling mistakes)
I am writing this post on behalf of my brother. The time has arrived.
Ollie is currently booked into the hospital and he is scheduled to be
operated on tomorrow at 8:30. I dont know if this is 8:30 RSA time or Uk time
which is 1 hour behind us.
According to communication Ollie is going to receive the Glenn Shunt
and the valve repair on the heart is to be done.
This is all that I know now, and the family is with Ollie at the hospital without wifi.
This is an emotional time for us all..... But we trust in Him who gives us strength.
Jaco
PS
( Please forgive the grammar and spelling mistakes)
Tuesday, 22 August 2017
Technical (medical) cardiologist report
OK so for non-medical folks - Ollie has holes in his heart and his one valve leaks a lot. They could repair it completely but that will be very risky and might make him worse in the long run. So they will put in a shunt to help the right side of his heart and repair the valve so that it doesn't leak so much and the pressure in the heart is less. That makes the heart last longer and its work easier. What exactly must be done is not 100% clear at the moment because Ollie is a borderline case. The specialists will discuss this tomorrow and then let us know, but it might also be a decision that is taken in theatre. The operation will happen either on Thursday or Friday, depending on bed availability. If you have some medical knowledge or are interested, a more technical explanation (with my limited cardiology knowledge) follows.
Ollie was born with coarctation of the aorta and a complex defect call unbalanced atrioventricular canal (uAVC) or atrioventricular septal defect (uAVSD). The coarctation (narrowing of the aorta) was fixed at 10 days old and the other defects not. The fix was done very well and is still in perfect condition. The uAVC defect is composed of a common AV valve (and valvular deformities) and unequal ventricular sizes. In Ollie's case, the left ventricle is small and he has a cleft in the mitral valve leading to significant regurgitation. Ollie had a pulmonary band placed at 3 weeks of age to prevent flooding of the lungs from the heart which occurs via the overload of the right heart through the left to right shunting.
Baby's with Down's syndrome are sometimes born with this defect but in their cases, the ventricular sizes are similar. In such cases, repair is straightforward via a surgical procedure called a biventricular repair (BVR). If the left ventricle is very small or even absent, then a procedure called a Fontan operation is performed. This consists of 3 staged procedures that convert the heart to a single ventricle. Fontan operations were first performed successfully in the 1980's and the majority of these patients are now entering their 40's. Before 1980, these kids typically survived for 1-3 weeks post birth. When the left ventricle is small or borderline, the decision is more difficult - if a BVR is attempted and the left ventricle can't sustain systemic circulation, then the patient can end up with poor exercise tolerance, persistent tachycardia and subaortic stenosis. A good BVR is however associated with cure and normal life expectancy. A Fontan operation is associated with life expectancy of 40 years and counting. Ultrasound can only tell so much. Ultimately the surgeon has to take the decision in situ, with the heart and defects visualized.
Today the cardiologist confirmed (we knew this from previous scans both in SA and the UK) that Ollie is just such a borderline case. In all likelihood, they will perform a Glenn shunt and a mitral valve repair. That won't make him a Fontan or a BVR, which leaves options open for the future. But it will improve his oxygen saturation and protect his right heart from overload and dilatation from the extra work it helps the left ventricle do through the septal defects.
Ollie was born with coarctation of the aorta and a complex defect call unbalanced atrioventricular canal (uAVC) or atrioventricular septal defect (uAVSD). The coarctation (narrowing of the aorta) was fixed at 10 days old and the other defects not. The fix was done very well and is still in perfect condition. The uAVC defect is composed of a common AV valve (and valvular deformities) and unequal ventricular sizes. In Ollie's case, the left ventricle is small and he has a cleft in the mitral valve leading to significant regurgitation. Ollie had a pulmonary band placed at 3 weeks of age to prevent flooding of the lungs from the heart which occurs via the overload of the right heart through the left to right shunting.
Baby's with Down's syndrome are sometimes born with this defect but in their cases, the ventricular sizes are similar. In such cases, repair is straightforward via a surgical procedure called a biventricular repair (BVR). If the left ventricle is very small or even absent, then a procedure called a Fontan operation is performed. This consists of 3 staged procedures that convert the heart to a single ventricle. Fontan operations were first performed successfully in the 1980's and the majority of these patients are now entering their 40's. Before 1980, these kids typically survived for 1-3 weeks post birth. When the left ventricle is small or borderline, the decision is more difficult - if a BVR is attempted and the left ventricle can't sustain systemic circulation, then the patient can end up with poor exercise tolerance, persistent tachycardia and subaortic stenosis. A good BVR is however associated with cure and normal life expectancy. A Fontan operation is associated with life expectancy of 40 years and counting. Ultrasound can only tell so much. Ultimately the surgeon has to take the decision in situ, with the heart and defects visualized.
Today the cardiologist confirmed (we knew this from previous scans both in SA and the UK) that Ollie is just such a borderline case. In all likelihood, they will perform a Glenn shunt and a mitral valve repair. That won't make him a Fontan or a BVR, which leaves options open for the future. But it will improve his oxygen saturation and protect his right heart from overload and dilatation from the extra work it helps the left ventricle do through the septal defects.
Most importantly - we are well and we are LOVED!
Cardiologist report
We met with the cardiologist late this morning. He did a scan of Ollie's heart and then discussed the options with us. The detail of that I'll post a bit later. But essentially we didn't get any new 'surprises' and he is impressed with how well Ollie is doing. The liaison nurse took us on a tour of the facilities and put Ollie nicely at ease. The cardiologists and surgeons will discuss the findings of the scan and some of the diagnostic procedures performed in South Africa and then surgery will happen either on Thursday or Friday, depending on bed availability.
Grateful and blessed. Thank you Lord!
Grateful and blessed. Thank you Lord!
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