Physiotherapy and the search for energy

Hi friends,

On Sunday morning, Ollie's drainage pipe came loose.  It is under negative pressure, so that meant that air could get into the chest and that would have been a major problem.  Luckily Annett acted very quickly and radiographs showed that no extra air could be seen in the chest cavity.  The radiographs, however, picked up consolidation (less air than normal) in the lower lobe of the left lung.  In came the physios and ordered Ollie to move more and to blow bubbles to aerate the lungs.  He still is quite sore and lethargic but through gentle prodding, begging and bribes (the usual parenting 101 tools), he is doing what he is supposed to and it is getting better.  It is not quite what it should be and affects the saturation levels, but it's on the up and up.

From one day to the next, we keep on improving!  This evening, the normal Ollie appetite was also present for the first time - hopefully, that gives him an energy boost and helps with the exercises he has to do.  Birmingham Children's Hospital is fantastic!  They allow one of us to co-sleep with Ollie and we can be with him for 24 hours a day.  The staff makes a point of knowing his name and ours, and they answer even all my questions!  Our experience in the UK and here in Birmingham has been consistently positive.  To add to that, we had a visit from my cousin Cobus yesterday.  I had last seen him at his sister (and my cousin) Stephani's wedding to Jurgens, in 2006!  Well, a long time ago anyway!  And Finn and Ollie got to meet their second cousin, Bella for the first time.  So Finn got the chance to run around and practice proper English.  He did smashingly!

Tomorrow they will hook up a 24-hour ECG to Ollie and if that is normal, the wires that are still in his chest for pacemaking purposes, if needed, will also be removed.  Then only one IV cannula remains!  Gratefully and humbly we thank our Heavenly Father!

Cobus, Bella, Finn and myself eating burgers and catching up on old times

Sharing a joke with dad.  Ollie, my extracorporeal heart...

Big brother Finn reads to Ollie.  He perks him up wonderfully and also does his schoolwork in the process.

Second cousins together for the first time

No prizes for guessing after whom Ollie takes!

Für unsere Deutsche freunde

Sorry - mein Deutsch ist wirklich nicht so gut. Bitte entschuldige mich! Es tut mir leid daß ich bis jetzt gar nichts auf Deutsch geschrieben hattest. Aber alles war so ein bisschen dürch ein ander und irgenwie hectisch. Also, unser kleiner Ollie hatte am Donnerstag seine OP. Alles hat gut gelaufen und der Chirurg könnte der klappe teilweise repärieren en der Shunt anlegt, damit der Herz weniger belastet würde. Fuer 2. tage darft der Kleine wenig wasser trinken und das war sehr schwerig! Aver jetzt geht es ihm schön viel besser und er kämpfe prima!

1. Sein Brustabfluss hat nur Blut und Wasser in - keine Lymphe! Es wird immer weniger, wenn die Zeit vergeht und wird höchstwahrscheinlich am Montag entfernt werden, so dass es viel einfacher für Ollie zu umgehen.
2. Seine Sättigung liegt zwischen 90-95% und ziemlich stabil3. Sein Herzrhythmus hat sich von nodal zu sinus rhythm in ICU bewegt und ist dort geblieben. Wenn es so bleibt, werden die Herzschrittmacher-Drähte auch am Montag entfernt.4. Er ist nicht mehr auf Morphin-Infusion.5. Die Schwellung in seinem Gesicht ist fast ganz verschwunden, und dafür braucht er jetzt kein Furosemid. Nur gute alte Schwerkraft und Druckstabilisierung im Shunt.6. Er ist schon ein bisschen herumgegangen - ganz erstaunlich, dass ich schon 48 Stunden früher Herzchirurgie gehabt habe!

Vielen dank fur alle nachrichten und unterstützung!

From the horse's mouth

Dear friends,

We had to lie low for a bit.  The post-op recovery had its own unique challenges.  The most important thing, however, is that Ollie is doing better every day.  Here are the most important aspects:

1. His chest drain only has blood and water in - no lymph.  It is getting less as time goes on and will most likely be removed on Monday, making it much easier for Ollie to get around.
2. His saturation is between 90-95% and fairly steady
3. His heart rhythm has moved from nodal to sinus rhythm in ICU and has remained there. If it stays like that, the pacemaker wires will also be removed on Monday.
4. He is no longer on morphine infusion.
5. The swelling in his face is almost completely gone, and he doesn't need furosemide for that now.  Just good old gravity and pressure stabilisation in the shunt.  
6. He has walked around a little bit already - quite amazing for having had open heart surgery 48 hrs earlier!

He does seem a bit withdrawn at times.  Hopefully, this is just temporary, it is tough to see him like this.  Finn is handling all of it quite well, but certainly much better now that Ollie is a bit more interactive.  He was very worried about his little brother!  

I haven't yet said thank you for all the support thus far, so thank you! Thank you from the bottom of my heart!  It has been very humbling and much appreciated. To God be the glory!

Recovering

Dear friends


Sorry for the delay in posting, my Android and Ipad were in a massive war...
With my fist... !!!!

Cloud, drive, dropbox .......... went old school and got out the USB Cable...

Well enough with my technical problems........


Ollie has been moved to his own room and is growing stronger by the second.
Most of the tubes and  thinghies  were removed and looking  smashing


After a difficult 2 nights, this is how he woke up :

The ladies will melt with that smile !!!

First smile after the operation.

Some time passed  and now he is talking and playing with Finn, and making 
Henry loose more hair....ehghm..... Ok
   
Look at them now

watching some TV and catching some R&R with Finn and mommy.

Looks like Annett is more into it than show than them !!!


What an absolute miracle !!!  Keep growing stronger Ollie, the angels are on duty !!!!.


 Richael and James can't wait for their nephews to return ....... 


PS.  Henry and Annett  ..... job well done.


 

 

Recovery 1

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.......

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

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

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)

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.  

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!

The plan for the week

 I wanted to share some news on what will happen this week, as many people have been asking.  We are scheduled to see the cardiologist tomorrow for an ultrasound scan and establishing some baseline parameters.  On Wednesday Ollie will be admitted and surgery will happen on Thursday.  What exact surgery will take place depends a bit on what the scan reveals but probably mostly on what is found when on the theatre table.

Today we will go to the oceanarium and spend some time together just enjoying the simple luxury of time together.  Finn has to start doing school work from tomorrow on, so there is some sense of normal life, too.

Fetching Oma und Opa from the airport by bus.  We had to sit at the top, of course!

Finally here!

Arrived safely in Birmingham

After some tense moments (which really is the subject of good conversation over a glass of wine) we have arrived safely in Birmingham.  We took a BAT to Birmingham, dropped off our luggage and then toured the city a bit.   Later today Opa und Oma arrive, and that is, of course, a major highlight for the boys.  We are also glad to have them with us; the support is much needed and appreciated.  On that note, we have been inundated with messages of hope and support from across the world.  Thank you to each and everyone who carries us in prayer and thoughts!

So while we are trying to make memories and carry on as normal, there are moments of sheer panic thinking of what lies ahead. Join me, if you will today, as I pray Ps 23 and Heb 13:5,6 over us for those moments.  Thank you to my Mom, Rita and friend Rudolph Fourie, for sharing those verses.

Note to self: when there are dark clouds in England, you are going to be rained on! 

The new favourite dining / playing spot

Why after all this time? UPDATE

Ollie has been seeing cardiologists at Sunninghill hospital every 6 -12months and they have been following his health very carefully, also involving Birmingham Children's Hospital specialists, and even specialists from the USA.  The time has come to do something to ensure that Ollie doesn't get permanent heart damage and so surgery is indicated.  So, we are headed to the UK for this surgery and need to be there by 21 August. Over the next couple of days, I will post some more detail about the surgery and also keep you up to date on our travels and of course, Ollie's progress.

We have enjoyed the support of many people over the last 5 years.  We are very grateful for that.  As we head off to the UK and continue this journey, we ask you to travel it with us, again.  While we will be reachable by WhatsApp and all the other modern tech communications, the Blog offers us the opportunity to communicate at a time when convenient for us and reach everyone.  We wouldn't want to miss out someone on text or WhatsApp!

We also ask that you keep us all, but especially Ollie, in your thoughts and prayers.

It's been 5 years, and a bit...

Indeed, time flies.  Seasons come and go, some things change and others stay the same.  So today, a week before we have to be at Birmingham Children's Hospital, I thought it would be a good time to just celebrate Ollie and our family.  Here are some photos of us all over the last 5 years.