March 14- one step forward, one step back

Ah, the roller coaster strikes again.

Yesterday was less-than ideal.  Jack has been running a low-grade fever for a few days which has not been making anyone in the PICU so much as blink.  However, throughout the night, that fever began to creep up.  Yesterday morning, he felt incredibly warm to me.  Ben, a nurse who has become one of our best buds here in the PICU, stopped by to check on us (though we weren’t one of his patients that day), and I asked him to take Jack’s temperature.  Jack had spiked up to over 103.  

This is cause for concern.  The timing of this fever makes shunt infection a suspect.  However, muddying the issue is the fact that he’s had a lot of “secretions” (or, in the vernacular, boogers) for a number of days, and I believe the cold has gone into his chest. So, is a shunt infection causing the fevers and a respiratory infection causing the other symptoms?  Is a respiratory infection causing all of the symptoms?  Or is a shunt infection causing all of the symptoms? 

Dr. Piatt was consulted, and he felt it best to do a culture of Jack’s cerebral spinal fluid.  Jack is at a particular risk for an infection in his CSF because of that awful drain leak that he endured for so long.  Interestingly, shunts have a little valve near the scalp that can be accessed with a needle through the skin, so that testing for infection is a relatively simple bedside procedure, rather than an invasive spinal tap.  So far, none of Jack’s CSF cultures have shown any bacterial growth, or any increased white blood cell activity, though it takes a few days to be sure.  This initial news is encouraging.  We want to avoid a shunt infection, though we know it is almost inevitable that Jack will have an infected or otherwise faulty shunt sooner or later.  If Jack’s shunt is infected, it may need to be removed.  If removed, Jack will need a lengthy recovery period, during which time another drain will have to be put in… and then another shunt surgery.  Ugh!  

Jack has finally had a good night sleep, and this morning I am feeling a bit more hopeful that this is not a shunt infection.  Last night, Dr. Meg Frizzola, one of our favorite PICU attending physicians (and not just because of her awesome first name) explained to us that bacteria loves plastic, and that Jack’s trach site will always have a certain amount of relatively benign bacteria in and around it.  However, sometimes it gets a bit out of control, resulting in fever and/or upper respiratory symptoms.  While I’d hesitate to use the word “confident”, Meg felt it was highly likely that this tracheitis is at the root of the fevers.  PICU staff has put Jack on prophylactic antibiotics for now, and will narrow down exactly what bacteria (if any) is causing the symptoms.  Once we know, they’ll adjust the drugs to treat the specific bacteria that is at issue.

In other news, Jack received a Healing Touch treatment from our wonderful nurse Paula yesterday, who stayed over an hour after her 12-hour shift to do this for us.  If balancing Jack’s energies and giving him some nice, relaxing touch might help him, then sign us up!  

Jack’s bed in 2A has been given away for now.  He may still migrate to that unit soon, or we might stick around our PICU family for a while longer.  We’ll see what today brings, and more importantly- what grows in those petri dishes.


4 thoughts on “March 14- one step forward, one step back

  1. katie schisa

    Still sending thoughts and prayers each day from Syracuse. People near and far are sharing this journey in some small way with you all. Thank you for the updates – xoxo

  2. Jill and Mike

    What a fighter our baby Jack is and what heroes his parents and grands are!
    The intensive care roller coaster is such a tough and scary ride – we wish we could do more than send our love and best positive, healing energies. Meg, thank you for having the strength and talent to keep us so well informed – and to continue being the most amazing mom. Stay fierce, feisty and funny (that Gaffey humor will get you through this)
    Love to all

  3. John Green

    Glad to hear that Jack had a better night last night, hopefully John did as well. Now it’s your turn to go home and get some quality rest as well as some Sam time. Susan Davi and I got to meet Ruth and Sam last night when we did the food drop. Ruth didn’t sound like she had a great day with the window and all, but Sam wad happy to see us, not saying that Ruth wasn’t.
    Hope you enjoy or enjoyed your meal depending on your logistics.

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