March 6-7… Lots to report!

I imagine that everyone who takes the time to read this blog is happy to embrace Jack along with all of his new accessories, so today I’m including some updated pictures of Jack.  However, if you are squeamish about seeking babies in the hospital hooked up to equipment, this is your heads-up.

Jack has been resting comfortably for the past two days.  He is still sedated to allow the trach enough time to heal.  The only outstanding issue is that Jack’s drain still leaks at the site, resulting in some scary moments.  However, PICU staff is amazing as always and doctors have figured out that periodically flushing the catheter which leads from Jack’s head to the drain mechanism seems to fix the problem.  What seems to be happening is this: first, the catheter gets gummed up, causing the flow of CSF to decrease, which causes the pressure in Jack’s head to rise.  When it rises to a certain point, it begins to leak out at the drain site, on Jack’s scalp.  We can see the CSF rolling like straw-colored tears through his hair when this happens.  This scares us silly of course, but the real reason we need to avoid these leaks is that we can’t accurately measure how much CSF he is losing that way, and in order to keep Jack hydrated, we must replace every drop that he loses with additional fluid.  Let me say again… doctors and nurses and RTs here in the PICU are amazing.  They keep very cool and figure things out pronto.

jack 3-5-2014Jack has had a great day today. Nana stopped by and held up Jack’s favorite bird mobile for him to look at for a while.  He also met with the lovely folks from PT and got fitted with splints to help with his muscle tension (his limbs are putting themselves into odd positions as a result of the neurological trauma and will require some re-training after he is off of his sedatives).  When our favorite resident Keili stopped by to give Jack his morning exam, he tried hard to track his favorite rattle with his eyes (is it a bunny?  or a caterpillar?  We call it the caterbunny) and he did a pretty good job.  The trach has definitely helped him to feel more comfortable, and so has the GI tube- he’s getting full feeds again, delivered straight to his tummy.  Finally, after three weeks, a full belly.  Jack must be feeling like the very hungry caterpillar, indeed!

IMG_20140307_100234The great highlight of the day came when Jack’s speech therapist came and told us how pleasantly surprised she was at Jack’s abilities post-surgery.  Despite the facial weakness on his right side, Jack was able to manipulate his tongue and jaw quite well.  His oral reflexes are still good and he responded to stimulation on the right side.  But the real amazing thing was that he favored me with a smile three times, and when his dad came in, he got some beautiful smiles too.  (They’re weak and tired smiles, and only with half of his face, but they’re there, and it’s a beautiful thing.)  I don’t think I’ve ever seen John look so happy in the 13 years I’ve known him.

I wish that I could end this post on the high note of Jack’s amazing responsiveness today, which has so many good implications. However, we did get some scary news, too.  Dr. Walter stopped by to tell us that the final pathology (a study done on the tumor itself after it had been removed from Jack) results were back.  While we knew that this was a choroid plexus papilloma prior to the surgery, the final pathology revealed that this is actually what is called an atypical choroid plexus papilloma.  In my last post regarding the pathology report, I noted that this was a slow-growing type of tumor.  We now know that is not the case.  The atypical type is actually fast-growing.  Although it is not a carcinoma, the “atypical” designation does present an unwanted complexity to this case.  Jack’s care team is going to have to monitor Jack very, very closely to make sure that the tumor does not try to grow back.  While Dr. Piatt expressed some confidence that he did get all of the tumor out, we will have to watch for any remaining cells that may begin to grow.  Jack is scheduled for an MRI next week in order to begin our watch for wayward cells.  I pray that we are done with neurosurgeries, but that may not actually be the case.  I’m afraid it took a while for the implications of this revised diagnosis to sink in, so I’ll have many questions for Dr. Walter on Monday.

Feb 17On the home front, Sam is doing really well.  He’s been crawling around backwards for weeks, but yesterday I got to see him take four consecutive forward “steps” on his hands and knees in a bold attempt to get at Nana’s glasses.  So, Sam’s working hard and learning everything he needs to learn, and Jack’s resting up and getting ready for rehab next week.  Despite the bad news we received today, both of my boys are smiling again.  I think that’s reason to celebrate.


11 thoughts on “March 6-7… Lots to report!

  1. Annie

    I’ve heard about Jack’s story from his grandpa (I think you call him his Da). He is such a strong little boy, and looking good while doing it too! Best wishes to all of you. You are all incredibly brave and resilient. Bounce Back Jack! 🙂

  2. rudisell

    Meg, thanks for the update! How wonderful it must have been to see those smiles! I am smiling with you. Carol

  3. Kelly Smedley

    Prayers from North Carolina. I’m a UD grad (and DE native) and heard about your story from a family friend. Praying for strength for Jack and his parents for the road ahead. You, Jack, and your family are an inspiration!

  4. Jill and Mike

    We are smiling! because we get to see sleepy Jack’s beautiful head again (who even notices his new medical “accessories” which are not at all scary looking) and to hear about “Smilin’ Sam” doing the backwards crawl. Yes celebrate … and know we are in awe of your courage and positive spirit.
    much love from deeply frozen Lake Pocotopaug

  5. Kathie

    So happy to hear of Jack’s smiles, and Sam’s success with his crawling. You are all in our thoughts and continued prayers for healing.

  6. Megan Oakleaf

    Aww, I’m so happy to see both your boys! And I’m *thrilled* to hear about Jack’s smiles!

    I’m very impressed with how on top of every little thing your care team is. (Obviously, they should be!) I’m so glad they will be monitoring things with the MRI right from the start. Seems like a very smart thing to do.

  7. Danielle

    Both your boys look so beautiful and precious. We are thinking about the Grotti family every day.

  8. Ellen

    I’m Nancy Kandoian’s sister Ellen sending love and prayers from Ohio. I’ve been getting news from Nancy all along but just read your entire blog today — so humbling, so eloquent, so moving and inspiring — And I’m so glad for some good news of smiles tonight!!

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