Archive for the ‘ Daddy Update ’ Category

Had a bit of a scare here at the local playcenter / coffee house where Caleb was viciously attacked by a crocodile. Turns out, it was just his brother Isaac.

dailybread

New information has trickled in and our nurse informs us that: assuming Joel is stable, has no fevers, and has responded favorably to the radiation treatments at the end of this week, they will try and send us home for the weekend before re-admitting us on Monday.
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We still don’t have a clear answer on how long they will want to monitor Joel after next week’s chemo treatments. The chemo is less intense this time around, however, Joel will be undergoing 5-day a week radiation therapy for the next 6 weeks.
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Amy and the boys have been battling some cold symptoms, and after talking it over with the nurses, we decided that it would be best for me to continue my stay with Joel until Amy can get over her cold. Please pray that this will be soon as I am needing to commit some more hours to work as staying with Joel has proven to be an all-consuming task.
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-Ryan

psalm-36

Psalm 36

1Transgression speaks to the ungodly within his heart;
There is no fear of God before his eyes.
2
For it flatters him in his own eyes
Concerning the discovery of his iniquity and the hatred of it.
3
The words of his mouth are wickedness and deceit;
He has ceased to be wise and to do good.
4
He plans wickedness upon his bed;
He sets himself on a path that is not good;
He does not despise evil.
5
Your loving kindness, O LORD, extends to the heavens,
Your faithfulness reaches to the skies.
6Your righteousness is like the mountains of God;
Your judgments are like a great deep
O LORD, You preserve man and beast.
7How precious is Your loving kindness, O God!
And the children of men take refuge in the shadow of Your wings.
8They drink their fill of the abundance of Your house;
And You give them to drink of the river of Your delights.
9For with You is the fountain of life;
In Your light we see light.
10O continue Your loving kindness to those who know You,
And Your righteousness to the upright in heart.
11Let not the foot of pride come upon me,
And let not the hand of the wicked drive me away.
12There the doers of iniquity have fallen;
They have been thrust down and cannot rise.

Daddy's ChairIt’s always strange that when we come back into the hospital, we always have to start over from scratch.  New nurse, new doctor, answer same questions; again. New nurse, new doctor in the morning, answer same questions; again.  Yes, actually he does have a broviac, no, he’s not this fussy when you’re not around, um can we please get some pain meds and food?  He can’t have food? Since when?  Oh, order was placed wrong.  He can’t eat until the new feeding tube is in?  Ok, please put it on the left side and tape it close to the nose.

Seems silly to have an electronic patient record when you’ve got a human patient record sitting in a fancy big chair!  Problem is, electronic records don’t push the nurse pager buttons over and over again when they hold fussy, hungry babies.
– Ryan

8.8 earthquake off coast of Chili.  1000 times stronger than Haiti.  Tsunami warnings for the entire pacific rim.

“Come Lord Jesus. Come.”

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.

-Ryan

Safe in His Arms

Joel Chemo