While Pieter was at work yesterday (25th Day of the omer) and I was walking outside with both children, I received a phone call from the neurologist.
If she could drop by later. Of course!
She said that this week they discussed Avigail and her situation again with the whole team and they are afraid that it will soon be difficult to take care of Avigail with her ever-growing head and that the comfort will also be less and less.
The skin will be tighter and thinner and may develop bedsores.
To prevent this, we have apparently come to a point where we now have to consider whether we can and want to do something about this.
We have been offered to have Avigail in the hospital again to start drawing fluids through the drain again. They want to observe what this is going to do to Avigail and the balance in her head. If this goes well, they want to place another drain in brain chamber 3 and make it a permanent drain together with the drain that has already been placed.
The neurologist emphasized that this is not a life saver, but for comfort. To prevent situations such as wounds and difficult handling and care of Avigail.
January, before we knew that brain chamber 4 was isolated from the other brain chambers, the permanent drain was a target. Something we lived towards because going home would be closer. When it was noticed that the brain chamber was isolated and surgically inaccessible, unexpectedly going home came very quickly.
Of course there are consequences to this possibility and all kinds of complications are possible.
Infections, bacteria, imbalance, stress, accelerating the growth of the fluid in brain chamber 4.
This of course also has consequences for Dad, Mom and Yosef.
Again, we wouldn't be able to be with both children at the same time.
What a difficult choice!
Breaking our family apart again, even for a short period of time, putting little Avigail in a hospital bed, having her examined again, injecting her and even having her surgery stopped my mother's heart, but doing nothing may also be the wrong choice.
Pieter is more optimistic about this and sees it positively.
He is grateful for this opportunity.
Maybe this is even an answer to prayer.
We pray for wisdom.
But there is a good chance that we will be back in Maastricht / the hospital at the beginning of this week. (Sunday or Monday)
Knowing that G-d does not leave us.