Joel and I once again find ourselves “down the rabbit hole” and back at Children’s Hospital tonight.  Joel has been situated and is now asleep in his crib and I have once again inflated the queen sized air mattress and positioned it atop the twin bed frame and 2 chairs (surprisingly comfortable I assure you!)

Joel has been content all evening and hasn’t had a fever.  They’re not going to put him on IV fluids yet so they have upped the dose of anti-nausea medicine and intend to keep doing bolus feeding through his feeding tube.  They will continue to monitor and treat him for meningitis.  Hopefully it is just a stomach bug.

Our room is different, and of all the things to cause stress, I find that fact to be the most acute.  I don’t like it, I want our old room back.  This one is a mirror floor layout to the previous ones.  The bathroom is smaller, the tub is smaller, and most troubling, the large recliner I spend so much time in here has been shrunk to a rocking chair! (as you can see, a little small for me)

Ah well, at least I have the air mattress.

It is strange to me how much I rely on things to stay the same; stay predictable.  It’s comforting.  I get to control it.  I get to happen to it, it doesn’t happen to me.  I know what to expect, what to plan for…  You want me to feed him? No problem.  I’ll just put on the stethoscope here; draw air into this fat syringe here; hook it up to the end of the feeding tube here; oh, gotta make sure to kink the tube before I take off the cap, we don’t want stomach bile escaping.  Ok, so I just place the stethoscope hearing device on the left side of his tummy under his sternum and then simultaneously expel the air from the syringe; “woosh” oh good, the sound of air being pushed out the other end where it is supposed to be; in his stomach.  Now just place baby in high chair, measure the formula, pour into bag, close the valve, squeeze the vacuum tube, prime the line, kink feeding tube, attach the feed line, hang the bag on nail in wall near ceiling, open valve, check drip, we have feed.  Wait the half hour it takes to finish and follow up with another ounce of water and “voila,” baby fed.  Rinse, repeat in an hour.

Then baby vomits all over my clothes and hands and his hands and now baby must be washed and prevented from putting vomit in eye and now we call the doctor and mommy is leaving for conference and I’m scared. Baby may be sick and doctors want me to bring him in, who will watch the kids, ok you from 9pm to 7:30 am, you from 7:30 am to 1 pm and you from 1pm to, well, we’ll figure that out later, ok great, call the doctors, pack a suitcase, love and kisses and hugs my boys and thanks to grandmas and grab the computer and head down the rabbit hole once more for only He knows how long.

And so, here I am, in a chair I hate, holding a baby I love at 3 am because he’s just vomited again.   And praying, pleading, hoping that God will have mercy on us and pull us out of this hole we’re in.



There are 4 comments for this post.

  1. Jenny Stroh Hutson on February 27, 2010 7:42 am

    *sigh* Its breaking my heart watching you all go through this, Ryan. Just know that I am praying every day for this burden to be lifted from your family. And I’m sorry you lost your rocking chair. Too bad they don’t have inflatable ones, huh?

  2. Amorette Helm on February 27, 2010 10:26 am

    Oh Ryan, my heart breaks for you as I read this post…Jesus wrap him in your arms and give him peace! We continue to pray for Joel and your family daily! I pray you will have strength for this journey your family is on right now. I wish there was something tangible I could do to help! For now, I will just continue to pray about even the smallest things, even that you would get your big chair back! God bless! ~ Amorette

  3. ellen on February 27, 2010 9:46 pm

    My heart goes out to you and my eyes filled with tears as I read about how deeply you love your son. Imagine that God loves us even more! Continue to keep you in my prayers. Thanks for keeping this blog. A friend.

  4. Chris Skaggs on March 5, 2010 11:51 pm

    Good Lord I remember that feeling. Like you really want to have faith, ‘to be thankful for all things’ and you also want to scream the paint off the walls.
    I’m so with you.

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