4 and a half weeks after leaving home...

It is now already 4 and a half weeks ago that we left home and luckily the first three really stressful weeks are over and our life is slowly getting back to normal…Ollie is doing really well and we are now busy keeping him from jumping off jungle gyms and climbing trees! Before leaving England last week to spend some time with family in Germany, we visited friends (thank you Claire and Neill and Bonnie and Johann for having us!), explored a proper English castle, went on a boat trip and had a couple of nice English beers. Making sure that the kids and we remembered something else but the hospital in Birmingham. 

Henry has said it before but I also want to say thank you for all the support that we got: from all our family (especially Rita and John as well as Waltraut and Ruediger), friends, colleagues, even people we have never met. It really means a lot to us! I also want to thank Jaco and especially Henry for updating everyone through the blog and taking care of the writing and posting.

We are really amazed how well Ollie recovered and how quickly he was back to his normal self after such a major surgery. That was mainly due to the professional and compassionate care from all the hospital staff we met: doctors, sisters, nursing students, physiotherapists and support staff. Everyone was friendly, patient, knowledgeable and really caring. From greeting us by name to excellent support and care to helping us look for a lost soft toy fox... We can only say that the Birmingham Children’s Hospital made a very difficult experience as comfortable as possible for us.

The final/ follow up cardiologist visit a week after hospital discharge confirmed that Ollie's O2 levels have come up to 90-91% and that the Glenn shunt is working well. We already knew that the mitral valve leak after the valve repair is still moderate and that a complete repair was not possible because of the size of the structures. The only new thing we heard was that the valve repair made the ventricular septum defect (VSD) smaller which is now causing turbulences through the VSD which were not there before. This is not a concern at this stage but we need to keep an eye on it as Ollie grows...

For now, we are just glad that our small super hero is doing so well. We love you lots and lots and lots Ollie!

Enjoying a boat trip on the Birmingham canals

These 2 are just too beautiful! Thank you Finni for being the best big brother in the whole world!!

They absolutely loved bus rides!

Just playing... Funny bunnies!

This is so Ollie...being happy!

Discharge notes and instructions

The news is official - Ollie has been discharged.  He slept with us for the first time last night.  Of course we were looking in on him ever so often to make sure everything was still going well, which it was.  For the first time in 9 days, Ollie slept without someone waking him to check vital signs!

Upon discharge, they reported that the consolidation in his left lung had improved much, but that some crackles and wheezes could still be heard.  The ECG also showed that he had some prolonging of the PR interval (so there is some delay in electrical conduction in the heart) but this will resolve with time.  On Thursday we see the cardiologist again for a final follow-up, to make sure that he can fly safely.  In the mean time we want to see some sights around Birmingham, then visit some friends around the UK (now would be a good time to switch off your mobiles!), try to go up to Scotland to rediscover the roots of the Annandale clan and relax a bit.  We are disinfecting hands and avoiding crowds as much as possible - mostly because of trying to keep Ollie and the rest of us healthy, but also because the South African gets a bit claustrophobic in crowds...

The last couple of weeks have been a journey in itself, also one of discovery of the importance of faith, friends, family and of the precious gift of life.  Thank you to each and everyone that have thought of us, prayed for us, prayed with us, sent messages, bought gifts, encouraged us, cried with us, hoped with us.  Without you, this would have been much harder, if not impossible! We have had messages and prayers from people we haven't even met, separated from us by thousands of miles, yet bound intimately to us by love.  Thank you so very much! We are humbled and grateful beyond expression!  

Finn and Ollie waiting to go home

Outside the hospital with Dr Bear

Birmingham Children's Hospital

Ollie, back sleeping an uninterrupted sleep in his own bed

And there (s)he goes!

Thank you Lord, we have been discharged! At about 6:30pm, Ollie walked out of Birmingham Children's Hospital, holding my hand and with Finn and Annett on the other side of him.  So, 1 week and 1 day post open heart surgery, we are leaving the hospital bed behind.  We have to go for a follow up with the cardiologist on Thursday before we are permitted to fly anywhere, but for now we have to unpack and settle into our new accommodation.

I will cut it short and post again tomorrow.  The most important thing is Ollie is out and doing well.  Equally important is our most sincere thanks for all the prayers and thoughts that carried us through the last couple of weeks.

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.