We have returned!
A week away in Auckland Starship hospital where John needed a port insertion.. pics below (not of John) to indicate what i am on about..
That metal thing above, is a port, it has a tube going off it that is fed into a main vein, so that his medication can be injected by a special port needle (see diag) .
This is needed because he developed inhibitors to the factor VIII replacement factor we were using to prevent bleeding internally, and to stop bleeds when they occurred. Basically meaning his medication was no longer working because his body was building up anti bodies against it.
So for the last few months he has been going without prophylaxis (preventative) treatment, and has been treated on demand (when a bleed occurs internally) with a medicine that only works for 2 hrs in stopping bleeding.
So - from this point onwards he will be having 1000iu of Kogenate FS (the medicine his body is rejecting) every Monday, Wednesday, and Friday. We will need to access the port each time on these days, and we hope and pray that he does not find this too traumatic.
The idea is that by giving him high (ish) doses of the medicine he is building antibodies against, his body will eventually just give up trying to fight it, and thus, the inhibitor will go away (for good - we hope)
This treatment does mean that he will need to remain on regular doses of Kogenate FS - even after the inhibitor goes, for the rest of his life, to prevent the inhibitor returning.
Our office is now full of medical supplies, so we can do home treatment safely, and lower all chances of infection as much as possible. STERILE, STERILE, STERILE. That's our motto!!
Any way - here is the man himself after port surgery - His attitude to the whole thing astounds us! He is running about as though nothing has happened, eating and drinking normally (as you can see from his shirt!) and other than being a bit tender at port site and on neck (where tubing is put in to vein) he is his usual lovely, "i do it myself" little man!
Blessed are we to have him in our lives (just as we are his siblings). We are proud, and we are thankful.
God is good in all things, and we have been feeling so blessed by our friends who cooked dinner for our return, who put fresh orchids in the window, who got in fresh fruit and veges, who also gave us a cake and muffins, and stocked up on milk and bread, plus abundance of delicious teas and coffees, so that when we did arrive home, no rushed shopping needed to be done. And no quick yucky takeaway dinner - I am greatly thankful and humbled by the hearts of our friends. Hearts of kindness, love, and of Christ.
We are also thankful for the surgeons, the doctors, the nurses the medicine, the plan. We are thankful to Ronald Mc Donald house where we stayed after Johns surgery with him, without that house, we would have been lost.
Yes, thankful just about cuts it.