Incremental improvements

Joy is getting better.  It’s a slow process, and improvements are incremental.  But a look over the last two weeks since she got home from the hospital shows progress.  She has gained weight; her muscles are no longer forcing her into a pretzel position; and she just looks good.

Weight gain

Joy had lost 5 lbs. during her 12-day hospital stay. So she only weighed 40 lbs. when she got home.

Praise the Lord – she now weighs 41 1/2 lbs. 1 1/2 lbs. is a huge amount for such a tiny body, and it is a great encouragement to us.

Pump feedings

Her feedings with the pump are going much better than I’d expected. When we were doing the bolus feeding, we fed Joy three times a day, and it took about 2 hours each time.  And we couldn’t move her for about an hour after feeding her. 

Now, with the pump feedings, she is being fed tiny amounts around the clock.  So I don’t have to remember to give her more food every 10 to 15 minutes, and I don’t have to schedule our lives around her feedings. What a difference for me!   I feel like a Mom to Joy again instead of a caregiver.   

And what a difference for Joy!  With the slow, steady pace of feeding, the food is staying inside, so she is getting excellent nutrition.

Stoma site

The skin around Joy’s feeding site is still very fragile.  Even the slightest bit of stomach contents that leaks out starts infection.  

In addition, the area where the skin ulcer was still looks like a puncture wound.  One day, I think it is a bit better, but the next, I can’t see any evidence of improvement.

We did some research on-line and found a paste which is used for g-tube sites.  About a week ago, we started using this paste to fill in the hole.  The paste sticks well to that fragile skin without damaging it. The paste prevents any stomach leakage from accumulating in the hole. As a result, her stomach acids are no longer eating away at that area.  Eeew… That’s kind of graphic.  Sorry!

Activity level

Joy’s pretty alert most of the time.  There is a fresh sparkle in her eyes.

However, she gets wiped out after any exertion.  For example, after I’ve given her a bath, she sleeps for two or three hours.  And the first few times that she has had physical therapy again, after only 1/2 hour, Joy was exhausted and slept for about 6 hours. 

So Joy has a long ways to go to recover to her pre-hospital activity level.  While she gains her strength back, she spends most of her time in bed – sleeping, listening to her radio, and watching movies on her little DVD player. (She might have "Princess Bride" and "Happy Feet" memorized by now, considering how many times she’s watched them in the past couple weeks.)

Prayer needs

• Pray that Joy regains her strength, so she can be out of bed more.
• Pray that we will be able to keep Joy stimulated while her world is limited much of the time to her bed.  
• Pray that the skin at Joy’s stoma site will completely heal.