"All bets are off"

The last few days have ended most unpleasantly. Monday and Tuesday nights were really rough on Joshua. Retching and gagging relentlessly. We've had to decompress his tummy and hold all feeds for hours. The only change we had made in his schedule or diet is to start up an antibiotic that he's been on several times before. He needs to take antibiotics on a regular schedule to help control the bacterial overgrowth he experiences in his gut. So I asked if we should hold that med, and the GI agreed. So far so good. Trial and Error. Trial and Error! You never know what going to happen. Joshua doesn't follow any rules, in fact when I asked if this med could be causing his uncomfortable episodes, his GI said, "No, it shouldn't make a difference, but with Joshua, all bets are off!"

How true is that?

All bets are off.

Happy Birthday Joshua

Joshua,

If only I could take your pain,
and finally give you rest.
I cry to Jesus once again,
Through heartache I'm so blessed.

You are the angel I didn't know
I was so desperately needing.
With every milestone that you cross,
My faith in God is strengthened.

You've changed my life as you fight,
Every day a struggle.
The war is a long and continues on
As you bravely win each battle.

I'm so thankful to be the one
That God has chosen to mother
Such a wise, sweet-spirited little boy,
So unlike any other.

Happy Fourth Birthday my Little Trooper
Remember everywhere you go
"Fight the good fight of faith"
And may the Good Lord make you whole.

I love you.

Mama

NICU Reunion 2010

Today was Joshua's NICU's class reunion. Four years almost to the day, Joshua made the Harris Methodist NICU his home. He stayed an exhausting five and a half months, but we all came away with such a special place in our hearts for those unique doctors and nurses. That incredible staff nurtured, protected and loved our sweet baby to a healthy state, well enough to be entrusted in our arms.

Raising a child is such an important responsibility. But raising a child with special needs, what ever they may be, is an honor. All we did was step up to the plate. Grabbing the reigns and taking off without questioning why. I, myself, found handling our situation was much easier if I just looked at Joshua's special cares as just something I had to do. Just as a new mom learns how to care her newborn, I learned how to do sterile dressing changes, hang TPN/Lipids, start tube feedings and give meds through a g-button. All was taught by that incredible NICU staff. I'm so thankful for all the patience and guidance they showed me those 180 some odd days.



So, today was a treat, as always. We got to see many of those incredible angels that literally nursed our Joshua to life. It was just as wonderful seeing some of the inspirational families we've met along the way. I'm so proud to be a part of a special family and am thankful we were allowed to walk next door to make this year's reunion. I was afraid we weren't going to get to go, but as it turned out, Joshua's TPN had just finished and his doctor rounded in time.

On another note, we got the first results back on the extensive test GI ran on Joshua's small bowel motility. It wasn't good. It showed his intestine doesn't have much, if any movement. This is most likely causing the very first section of the bowel to dilate. It's what we were afraid we'd see. But his stomach should great movement.

We are anxiously awaiting word on what the GI wants to do now.

Please pray...

Mega-Duodenum

No, it's not the latest super hero, it's what the GI found today during Joshua's scope. For reasons they have not been able to identify at this time, his duodenum is extremely enlarged. Most likely this is due to the fact that his bowel does not move properly. In addition, the doctor found lots of irritated surface area. Once again, thanks to the bacterial overgrowth, possibly an allergy? We should know more next week. He also sent off a sample of fluid from the pancreas to see just how well it's functioning. He also placed a catheter through his g-button that starting tomorrow will monitor the movements in his bowel. For this to be accurate, Joshua must remain NPO (no food whatsoever) until 10:00 am. That'll make it 32 hours of with no feeds or oral intake.

"So now what do we do?" I asked the GI?

There are some medications that have been pulled off the market that work for some, but it takes a long time for approval, and there's some side effects.

We can adjust his diet.

And last but not least.....

Transplantation is back on the table. Justin and I weren't prepared for that one. He says it is probably our only "fix." That far away abstract concept of such a scary procedure suddenly came rushing at us way too fast. Woa. Take a deep breath and pray.

I know I've been really vague to those of you that I've sent a message or talked to. I just don't know how to comprehend all of this just yet. All Justin and I can do is keep Joshua entertained and distracted. Distracted from the fact that he's hungry and from the strange tubes coming out of his stomach attached to 20 electrodes.

Someone distract me....

Not Home Yet

Monday came and went. Tuesday's gone. Wednesday's bringing a trip down to surgery for a scope. Maybe we'll find out just what is causing (specifically) the dehydration. I'll try to get this blog updated as soon as I know something. It's been pretty chaotic trying to manage everything. Joshua's had a lot of ups and downs lately. The doctors are so great at trying to find a healthy balance for him. Praying tomorrow gives us answers...

Just a Short Visit

Our home away from home, again.

Walking onto the fifth floor up from ER feels so natural. We were given our room number downstairs and my heart sighed, "Oh, good. Our old room!"

We were received with lots of familiar, warm smiles . Waves and hugs even. If we have to be in the hospital, at least we feel at home.

This stay should be one of the shortest. No infection, just dehydration. That has pretty much been corrected at this point. It only took an hour of IV fluids before Joshua sprang back to life. The dry, frail, tired little boy was once again perky, laughing and energetic.

What a relief!

Once the GI is certain his body is back in balance, we are safe to go home. Probably Monday. Not bad.

Justin and Caleb have been able to stay up here and I know that helps to keep Joshua's spirits up.

So, we're going home back on TPN. Oh, well.

I've finally come to terms with that. It's just not time yet. That's okay. His time will come. No doubt about it. In the Good Lord's care, anything's possible! He's taken care of Joshua his whole life. And it's not up to me to question His timing. Just gotta have faith.

Faith, what a strong trait. Faith and wisdom, we could all use a little more...

Seen better days...

Today started out with a bang! Let's see, it started at about 4:00 a.m. Joshua moaned and groaned all night. He was miserable. Tummy hurt, had to go potty, thirsty, leg hurt. You name it. At one point Justin had taken him to the bathroom and he came back to bed nearly in tears. Our little boy is withering in front of our eyes. Uneasy about the whole thing, I slept with Joshua the rest of the night. When our nurse got there he woke up. And when she brought him into the living room it was obvious he was going to the Emergency Room.

So I called the on-call GI and told him what was going on. He agreed, Joshua was going in for assessment. Upon arrival it wasn't long before we were back in an exam room. (Doesn't usually take us long thanks to Joshua's VIP status!) Labs were drawn as well as a blood culture. IV fluids started and an IV antibiotic just in case. We were able to wiggle into a radiology room for an upper GI, small bowel follow through. Which I think doesn't look much different from the last one we did in Sept., although I've yet to hear the final result.

So far what I know is Joshua's loosing Sodium and Bicarbonate. His body is way out of whack. Our goal is to get him stabilized. When metabolically he's off kilter, he's in pain, he's lethargic, he's confused and very irritable. Not my little boy at all.

He's definitely in need of some fine tuning. My prayer is for his doctors' wisdom in his care. Small changes can make huge differences.