Until my knuckles bleed.

The text messages came to me at work just as the lunch rush was winding down.

He is vomiting badly — 1:49pm

and then

Need you — 1:53pm

Seven minutes and a run through the underground tunnel connecting the hospital I work in and the hospital Liam is currently admitted later I entered Liam’s room to find Karin and a respiratory therapist put the finishing touches on an emergency trach change with Liam stripped to his diaper and looking a little grayer than his normal pasty pale. (The nurse, who was in the room when it happened, apparently bailed out and left soon after the vomit, showing her inexperience with trachs and vents. This is why Liam should have been admitted to the PICU. For those first important minutes when the risk of aspiration was greatest Karin’s were the only capable set of hands in the room. But anyway.)

Vomit. I suppose that most parents become accustomed to vomit by the time their kids are three. Not us. Liam just isn’t a puker. Today marked the third time the Liam has ever vomited.

Third.

The first two were the result of major and I mean major intestinal blockage. Both occurred during long, long hospital stays. So, when a text message says vomit I go a running.

Thankfully this one was not as serious. No, today’s Technicolor yawn was brought to us by a poorly timed bolus of water that should have been pumped in slowly with his feeding pump but instead was pushed in with a large syringe in a matter of minutes (I don’t mean to harp on her but this was also the result of the same nurse not knowing enough about Liam’s medical needs.) and a lunchtime feed being pushed too quickly afterward. The acidosis of the transition to the ketogenic diet certainly didn’t help matters and the diarrhea he experienced from a med given to help an elevated potassium reading the night before left us with a very dehydrated, grumpy, and did I mention gray little boy.

I’ll admit to being nervous and anxious and then an overwhelming sense of guilt that what Liam was going through was the result of our decision to begin this treatment. If it ain’t broke don’t fix it we always say but Karin and I took a healthy, if somewhat twitchy, little boy into a den of germs and put him through this pain and discomfort. Had we really made the right decision?

It was only a few minutes later when Dr. G arrived. To try to explain the respect, admiration and trust the Karin and I have for Liam’s neurologist who first saw Liam when he was only three weeks old would make this post unbearably long so just know that he is a very calming presence at a time when we needed one. He was followed by three residents who stayed silent and observed while Dr. G, Karin and I discussed symptoms, tests and then the options for nearly every scenario of test result for a little while. Sensing the end of the consult as Dr. G’s beeper went off I asked a question I normally never do since I prefer numbers and hard data over impressions or feelings.

“so, uh…you aren’t . . .concerned about this?” I was pretty sure I knew the answer to the question before I even asked it since Karin and I have done our homework on the diet and this transition and I always knew something like this could happen. At that moment, with Liam lethargic and miserable lying nearly naked in front of me, I needed to hear him say it.

“No this is normal. Episodes such as this are what we expect to see as we make the transition into ketosis. This is the reason we start this diet with a hospital admission.” The words came so easily to him that they instantly neutralized the tension in the air.

Photo by Karin.

The neurology nutritionist working with us entered the room to hear what our new plan was and with the release of all of my nervous, worried energy I called out to her “Hey, this is all your fault! I can’t believe you told us how smoothly this was going just this morning in front of Liam!” I pointed over to Dr. G. “Ask him. Liam hears something like that he’s going to throw you another wrinkle. He doesn’t ever let us off that easy!” The whole room laughed out loud. More than one of us got up to get closer to anything wooden to give it a knock because any mention of things going well, or worse the unspoken H-word*, is only tempting fate. Karin resumed hugging Liam  and the team disbanded to put our newly formed plan to action.

I waited a little while to witness the blood draw and get a few of the results we were looking for before heading back through the tunnel to work confident in the knowledge that all of the people who needed to hear the plan did so (including the capable nurse for the next shift who has been assigned to Liam 3 of the 5 evenings of this admission). Hospitals on their best days are a scary and stressful game of “telephone” where information and orders can change ever so slightly between departments and shifts. I love it when we can have everyone together at once.

After my shift had ended 5 hours later I returned to Liam’s room to find a pink, awake little boy snuggling comfortably in the large hospital bed with his mom. A small iv drip that had already been stopped and the tolerance of two feeds in my absence and you’d find it hard to believe it was the same boy who earlier had struggled so just to open his eyes. Dr. G who is the on call neurologist this weekend just happened to stop by only a little while later. We discussed the plan moving forward and reveled in the reveal of acceptable test result numbers in all of the categories that we were looking for. This time we didn’t have to ask for his impression, Dr. G decided to give it anyway.

“I’m really encouraged with these results. He seems to be transitioning very well. Like I said we do expect little events like this one. How have the seizures been?” He asked.

The kid caught up on some serious sleep this week. Alas, his parents, did not.

“Well It’s been about 36 hours now since we’ve seen anything!**.” We were so excited with the news Karin and I responded in unison. It has been a long time since we could say that.

“That’s wonderful.” Dr. G said with a great big smile “Now someone better knock on some wood!”

And all three of us did. Now you should too.

* the unspoken H word for the uninitiated begins with an h and rhymes with gnome and shall not be uttered until all three of us are in the van.

** We are in no way expecting this treatment to eliminate all seizures and I am positive that they will occur but a stretch that long this early is an encouraging sign that as he continues on the diet we may see a reduction in their quantity and severity. We may even be able to ween from some of the dangerous seizure medicines he is currently taking. We’ll see. Right now I am hopefully optimistic.

10 responses to “Until my knuckles bleed.

  1. Knocked on wood! The diet sounds really really promising! Knock on wood again : ). You guys have such a handsome boy I love the pictures of him!

  2. i have seen this diet work – hope all goes well
    my prayers are with you all

  3. So full of love and pride for you three. I cannot describe what your eloquont glimpses into your life mean to us.

    • This was a scary story to read. Can’t imagine living it. Bro, I can only say that my heart and soul are, in spirit, with you. That should be worth at least a Diet Coke or something.

  4. Mary Lou Leddy

    God Bless You All. We are praying every day that Master Liam will improve every day. And we are both knocking on wood. Love you all, Grandmama & Grandpa Andy

  5. Yoi can add me to the list of wood-knockers!

  6. You write with such grace and clarity about such a difficult thing. I don’t know, but I can begin to imagine, the incredible strain this kind of extended stay must be on you and Karin. I’m sending all kinds of light your way, up the coast to R.I. Also I totally just knocked on my butcher block.

  7. also knocking. holding you all in my heart

  8. Pingback: When Care is Always Intensive « Pressure Support

  9. Pingback: For now the Keto is a no-no « Pressure Support

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