Feb 28th… Finding the Road

After the high of yesterday and our joy at Jack’s survival through the surgery, it would have been hard to anticipate anything that could really bring us down.

Then we learned more about what Jack is facing and the complexities of it.

The trachial tube and the GI tube will likely be inserted next week, once Jack is deemed more stable.  We had had some time to settle with this, focus on all of the things that Jack will still be able to do, things like going for walks, playing outside, and most importantly (to me, anyway) to cultivate the greatest garden of all- his mind.

Yesterday, the uncertainties of Jack’s situation were made more clear to us.  There really is no way to know the extent of the damage that Jack’s hydrocephalus (the fluid buildup and subsequent pressure on the brain) may have caused, and what impact the removal of such a large mass may have upon him.  Though I had thought I had asked the right questions, something enormous was apparently left out.  The trachea tube comes along with a ventilator.  Jack will need respiratory assistance at least initially, as there is no way to know how well his brain will be prepared to handle the business of breathing after this surgery.  He may need the ventilator forever.

Along with the ventilator comes major concerns about his care.  He will need twenty-four hour care, which means that someone has to be with him at all times, and that a night nurse may be needed to make sure that nothing interferes with the equipment at night.  We will need extensive training- not just on how to suction out a trachea tube and keep Jack’s airway free of secretions, but how to put a tube in in an emergency, and how to fix the ventilator in an emergency.

The real bomb was this:  Jack is likely to be in the hospital full-time for six months up to a year.  And somehow, we need to live our lives around that.

We fell into the swamp for a while when faced with all of the possible outcomes that Jack could face.  There were a lot of tears.  We are so afraid.. there are so many fears for our family, our finances, for Sam, and more than anything, for Jack.

This morning, however, after a good night sleep and some play-time with Sam, I am feeling a renewed sense of purpose.  I’m not going to focus on the future to the point that it paralyzes my ability to deal with today.  As my wonderful UD friends know, when I’m not sure what to do, I draw pictures.  So, I sat down with a pen, and mapped out a bit of what we are looking at:

The yellow outcomes are the ones that we hope for in each of the main areas that are in play (and there are other main areas of concern in addition to these, but this is all that fits on the paper).  There are many goals.  The road ahead is more uncertain, more full of pitfalls that we had allowed ourselves to fully realize.  It’s a roll of a dice in any one of these areas, so what this map tells me is that trying to envision what five years down the road, or twenty years down the road is going to look like for Jack is a laughable waste of time and energy.

But the most important thing that I think we can all focus upon is that this is is all up to Jack.  (By God, I ate enough fish pills while I was pregnant, read enough books to him, and kept myself scrupulously healthy during those long months to give him the best brain that I could.  Not to mention, he’s got some really good genes. ;-))  That little boy has a lot going for him.  If things had turned out as we thought they were going to in the beginning, we could be looking at all these uncertainties… PLUS CANCER, which through a miracle, is not the case.

John is with Jack at the hospital this morning, and the news is that Jack is now tracking things with his eyes, and seems more aware.  Good job, Jack.

One breath at a time is an acceptable plan.  – Ani DiFranco