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:

scan0001The 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

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7 thoughts on “Feb 28th… Finding the Road

  1. Elizabeth Zalonski

    So glad to read what a good day Jack had, Despite what this little boy has gone through, maybe he knew that Mom needed a good day too. Love, Betty

  2. Elizabeth Zalonski

    I stopped in today at the Wallingford Library and want to let you & John know that Jack’s surgery was on everyone’s mind, So many asking about him & how he is doing. I also wanted them to know that they could send an electronic card to the hospital as I had, hope it arrived. While so many of us can’t be there to help please know that we have you all in daily thoughts. Jack has shown that he is a fighter, I think he will amaze us all! Love, Betty

  3. Elizabeth Zalonski

    Dearest Meg & John,
    I feel so helpless being so far away, I wish I could be there to give a helping hand. From the responses from your friends & family that are close by it sounds like they are so eager to help in the coming days and months when you will need them the most. Although Jack has many challenges ahead of him he is not alone, there are so many friends & family fighting for him as well. Also, every day there are great strides being made in the medical field so take one day at a time, take care of yourselves as well and know that your in so many people’s thoughts and prayers. GOD BLESS

  4. Carol Eichinger

    Good morning, Meg and family. I too, was relieved to see this update. Meg, no one can see or predict the future, even in the best of circumstances. Savor each moment and let Jack take the lead. I am sorry I am so far away, but I think of Jack and the family often.

  5. Megan Oakleaf

    Meg,

    I think you said it best a day or so ago…where there is life, there is hope. I am so glad to see this update and know that there are both…the silence made me fear the worst. I pray that the darkest times are now behind you all. As hard as the road will be, it IS a road, and I have all the faith in the world that Jack will surprise you over and over again. If he’s anything like you (and your family), he’s a trooper and a corker too.

    I know you said it’s laughable to try to predict the future, but I bet if you could talk to your future self, she would tell you that everything will be okay in the end. You will confront the challenges, surmount the obstacles, celebrate the successes, and over time Jack will Bounce Back beyond all expectation. He has a huge team, incredibly smart and resourceful parents, and Sam–who will surely be the best brother ever–pulling for him. And he has already survived so much…what a strong and determined little boy. I am in awe of him.

    Megan, Steven, and Nate

  6. Jill Gaffey

    Dear Meg and John, This is the Scripture that is helping me right now. “Trust in God with all your heart; do not depend on your own understanding.” Proverbs 3:5. My heart bleeds for you all but I know that step by step you will face every challenge no matter its enormity. We do not know yet in what ways Jack will surprise us with unexpected victories but there WILL BE victories and we will rejoice in and celebrate each and every one of them with you!
    Love and Blessings,
    Aunt Jill

  7. rudisell

    Good morning, Meg! Sooo glad to see this update…the silence was killing me. With that said, I’m sorry for the swampy moments. One day at at time, one breathe at a time, seems like a reasonable approach. Your UD family stands strong, ready to provide all the support we can. With much admiration, Carol.

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