Friday, August 30, 2013

Day 44: Watching & waiting

A year ago I walked the bridge to the hospital and ran into my friend, Martie. I was on my way out, thinking about how I was missing all of the first-year bustle at my job, wishing I was back with the excited and hormonal freshman wearing their very best outfits and worrying about favorite notebooks and pens and when they'd get their box of books from the book store. I could almost smell those books. But Martie called to me and grabbed my attention. I, in turn, grabbed her in a tight hug.
I hadn't seen her in years. Her son had been diagnosed with cancer and had been admitted to the hospital the day Jonathan was born. He had spent the last month and a half asking for regular updates about the baby in an isolette several floors below him, and we were following their story and praying for them. I couldn't believe we hadn't run into each other until now.

Her son bonded with baby J before he had even seen him. In many ways, more than just physical, they were in the same place. Fighting for their life, dependent on drugs and machines, and all with a lowered immune system. Over that summer they both experienced the dangerous and scary cascading effect as one organ began to fail and the others, surprisingly dependent on the function of that one organ, also started to slide. That or the teetering balance between improving one body function (for example, growth through TPN for Jonathan) at the cost of another (here increased risks of liver problems).
Martie recounted NG tube insertion/removal issues, which apparently is both horrifying and fascinating when you have your yet pre-teen son do it himself. She commiserated with me at the utter exhaustion of multiple months in the hospital, and finding care for children while trying to care for a sick child. And then she surprised me, because more than that, she understood a lot of the medical talk I threw at her about Jonathan's status. And as I explained things to her, shereally wanted to know. A lot of people have eyes that glaze over, or they become uncomfortable when you start to talk about medical issues or health.
Martie had been on the front lines, though. When you're one of two primary care givers for a dangerously sick child, you learn to get over it. Even if my stomach churns, and my head feels faint, I have to know. I want to know. Moreover, I don't want the doctor to think I'm someone who can't handle it, because if they think that they may sensor information that would be so important for me to know later on. So I act strong, I fake the strength until my stomach learned not to churn and my head is able to stop itself from floating away. I asked questions when I didn't understand. I gained confidence as a lay person in a medical world.
Apparently so had Martie.
Our conversation was brief, but refreshing. It started with a hug, continued with updates, and ended with us rushing off to care for our children -- me on my way home to care for my girls, she on her way to care for her sick son.
I'm going to pause here. Jonathan and Martie's son, they both had it bad. Cancer and prematurity. Today there's another baby, about Jonathan's current age, out there fighting for his life. His first name starts with E. He has a brain tumor. It's aggressive. The chemo has not been good to his body. Much like Jonathan or Martie's son last summer, his body is shutting down. But he's tiny. Very tiny. And I don't want to see another stone where the birth and death dates are too close together. So, praying friends, could you pray for him tonight, too? Like J a year ago, he's tiny, he's weak, and he's being asked to fight. Like Martie's son, he's been given drugs to cure the cancer, but those drugs are taking too much of a toll. The mom is a friend-of-a-friend, but her story hits home. It really hits home.
A year ago this is what I wrote on our care page:
Written August 30, 2012 9:20am
So many of you have never met this guy, and yet your heart has gone out to him and to us in such meaningful ways.  Thank you.  Some of you I haven't seen since high school or since that one time in my college years when you introduced me to Settlers of Catan -- so, ten to fifteen years ago.  And yet you are keeping up with this little guy and sending notes of encouragement.  I don't always respond to every note, but each one is so meaningful to me!  Thank you!

I'm confident that God is sustaining this little guy.  I don't talk like this often, but here I know it's true.  We feel surrounded by your prayers, and I can only imagine that Jonathan is feeling some of this comfort as well.  There have been so many times where this little one has beaten the odds, and yet he keeps fighting. I know the time may come when God, in his mercy, says that the pain Jonathan is going through is too much, and it's time for him to come home.  I hope that will be when he hits 80 or 90 years old, certainly long after I've left.

Right now we're sitting and waiting for the next 48 hours to pass, for Jonathan to have surgery far behind him and still be looking good. As noted before, we're paying close attention to renal function (kidneys) and heart (esp. blood pressure).  He's on a medication to help his kidneys function better, but if that med causes his blood pressure to go too high, the meds will be discontinued and he will be on his own for kidney function. He's too small for kidney dialysis.

So far so good. (But please keep praying!!  Often it looks good, and then turns bad over 12-24 hours.)  He's on a half dose of morphine for pain, he's looking less puffy.  The skin around his upper arm is loose for the first time in several days.  Still some edema but not as bad as a few days ago.  He is ACTING much more like himself.  He's peeing which always makes me cry a bit.  Peeing is so good.  It means his kidneys are functioning and his edema might be coming down even more.  His blood draws check for kidney function by testing two different things in the blood, and those numbers are now nearing the normal range. They're not fantastically improved, they are about what they were yesterday, but they at least aren't worse.

They weren't able to put in a central line during surgery yesterday. He was too puffy for them to find the veins.  Since he's going to be on some IV nutrition for the next six weeks, they will have to get this line in soon.  They'd like to wait until Monday to do this (so that he's been on antibiotics for at least a week) but he's running out of veins to poke for IVs, and the IV lines go bad within a day.  Often he needs to have two IVs, one for nutrition and one for receiving blood.

So, to summarize:
  • Concerns for post-op recovery and his body's ability to function, esp. kidneys and heart
  • Praise that he's doing well so far
  • IV concerns -- hoping that IVs stay good longer, that he doesn't have to be poked too much, and that he has enough IV sites remaining so that we can push off inserting a central line or PICC line until the bacteria has cleared from his blood.
  • We are feeling your prayers and concern in powerful ways.  Thank you.
Thank you for walking with us.


(Okay all you pediatric PT folks, I know what you're
thinking. Bad form. Exersaucers are nearly entirely forbidden for
preemies for muscle development reasons.
 BUT we don't own one, it was for a short time
in a clean nursery with very few other kids,
 and it made for a VERY cute picture.
And he was THRILLED.)
Those are some of the bleakest pictures I have of my son. I don't have much of an update from today, a year later, but I will tell you he was very proud of himself at his ever increasing mobility today. He loves to play peek-a-boo. Object permanence?  COOLEST THING EVER. He plays with himself and his mobile, too. No parents needed for this game.

Oh, and I got to hang out with those "hormonal freshman" in their new-school best today. And it was just as fun and exhausting as I remember. And much better than being on a medical bridge to uncertainty.

These are pictures from this week. You knwo what else happened this week? Jonathan went and saw Martie's son in the hospital again. Martie's son is, over a year since his diagnosis, still undergoing the dreaded body poisoning to rid himself of cancer. I'm not going to post the adorable pictures of them together (him being her son and not mine and all that) but you may imagine it. Pre-teen boy having hair-wars with my son (my son is winning). Jonathan adored his pillow. He adored Jonathan's everything. Because, really, who can resist a smile from Mr. Jonathan?
In the spirit of all that, here are other pictures of cute Jonathan doing cute Jonathan stuff.

It is SO good to have a reader in the house!

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