A chronicle of our trials and triumphs as we battle Hyper-IgE syndrome (Job's disease) with our baby boy Sam.

1:24 PM

Update from home

I apologize for not updating sooner - as most of you know, no news is usually good news.

The good news is, we've been home for almost a week now. Sam appears to be doing well, but there are downsides.

We came home with a feeding tube installed, and it's been a real battle to keep it down and taped, especially with an increasingly active boy. Needless to say we are becoming intimately familiar with the best and worst ways to tape, glue and wrap feeding tubes. He is eating about 2/3 of the calories he needs during the day on his own, and we use the feeding tube at night to supplement, and for easy (relative) administration of medication.

Seems as though each trip to the hospital introduces new precautions, medications and processes that need to be administered. It's getting increasingly more complicated to keep sammy healthy.

Having said that, there is no price too great to have the family together. We are just hoping we can get into a rhythm and routine, perhaps generating some free time for luxuries like lunch, personal hygiene, date night, laundry and...sleep?



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2 comments:

onecent said... @ June 30, 2008 at 9:27 AM

HUGS! I am glad you are all together again! Bless your family for taking the older kids for awhile, so you could be with Sammy as much as possible.
continued Prayers for your family!
~tidwells

Unknown said... @ August 1, 2008 at 9:54 PM

Hey Fairbournes,
glad you are currently home and wish it lasts for a while for you. We think about you guys often. Hope you are getting some rest. Would enjoy catching up with everything. Peace. Love. Happiness.