Tuesday, November 24, 2009

70 mls/hr

There it is. 
Our goal. 
Our prayer. 

If Joshua can make it to 70 mls/hr of formula over 16 hours each day without trouble, his G.I. is ready to pull out his central line. 

We were handed this wonderful news monday at a routine checkup. He's at 51 mls/hr today and with consistent progression, we're only looking at 2-3 months left of TPN. Incredible! Joshua's surgeon warned us long ago that it may take years and years before this would happen and I've always been prepared to take his TPN and central line on into his preteen years. 

God please continue to heal my baby's body. If his central line is gone, so many threats are eliminated from our day to day lives. 

70 mls/hr, here we come...

Sunday, November 15, 2009

Easy Does It

Friday April 28, 2006, hours after my emergency C-section, the Pediatric Surgeon walked into the room. Or actually it was more like floated into the room. He was an angel sent from God. Of course, I was pretty doped up on morphine! At any rate, my son is alive today, I believe, because of this doctor.

He was a man small in stature with the kindest eyes. Dressed in green scrubs still wearing his paper hat he walked up to my bedside. After introducing himself, the first words I remember hearing were, "This is bad." 

Wow, three words no one ever wants to hear from a doctor's mouth. My head is still spinning from the previous 2-3 hours. He told us things would be a roller-coaster ride from here on out. We would take two steps forward, only to take one back, sometimes three. The surgeon instructed us we were to take baby steps for a long time. Progress would be slow, but don't get discouraged. And lastly, looking at me he says, "You are going to become a nurse."

Without even thinking, I nodded my head and said, "Yes, sir." I was going to do whatever it takes.

Well, the good doctor couldn't have been more correct. This has been the longest roller-coaster ride of my life. Just when things go well, something creeps up from behind and pulls the rug out from under us. But, time has taught me much about Joshua. I don't pretend to be confident, but no backward regression is always an opportune time to try to push him. Each good stretch gives us a chance to raise his rate and encourage more oral intake. We've had lots of set backs, and I know there will be more.

But today. Today something's working. Maybe it's the new formula. Maybe it's the oregano oil. Maybe it's just Joshua's growth. God only knows. Slowly, but surely we're moving forward. Today I raised the rate of his formula to 49 ml/hr over 16 hours. For Joshua this is amazing! Even more amazing, last week, Joshua ate beef stew! He also ate an entire tube of Gogurt (yogurt for kids) and said "Ummmm!" while he ate! Tears welled up in my eyes!

What a long way we've come since that stormy Friday night. Each step forward is a miracle and a blessing. Thank you God for my Sweet Joshua, he's taught me so much patience!

Tuesday, November 3, 2009

So Far, So Good

We had our second day of Eating Therapy today and Joshua really responded well. He seems to like is therapist and is willing to "work" for her. He hadn't had too much trouble eating the easy things, but now we're off to the tougher stuff. Joshua's condition limits his diet of course. His GI would love for him to eat lots of meats. That has been harder for us. He can do deli slices of turkey, but chicken and beef throw him a curve ball. Tomorrow we're working on chicken strips, with breading. Maybe something like meatloaf next week? Or stew. Stew sounds good!

At any rate, it's time to sit down with Joshua's Dietician & GI to see if his higher rate in feeds (we're at a whopping 47 ml/hr!) and increase in oral intake will bring about a decrease in TPN soon. It's what we've been praying for.