Where to begin?

It's been a while and there's lots to catch up on. I've been a better facebooker than blogger lately. It's a shame. I just always have more to say than time allows, so I think, "I'll get it caught up later..."

Well, since last entry we celebrated Gastroschisis Awareness Day. An amazing group called Avery's Angels spearheaded this observance day. We kicked it off by Justin and I giving blood. What a great feeling! I think we'll become regulars.

Then later picnic and balloon release. Justin took Joshua for some McD's afterward. What a great day we had. I can't wait for next year, I'm going to get my GUTS group more involved and get something hosted at the hospital.

Just a mere 2 days later, BAM. We were hit with a line infection, 2 bacteria and a yeast all at the same time. We had one sick little boy on our hands. High fever for days. The infection wouldn't clear and his central line was finally pulled. After 3 days of losing IVs we got a PICC line placed and were able to complete the 2 week antibiotic course in hospital. We had an upper GI small bowel follow-through performed and the doctors were very pleased. Joshua seemed to be doing well enough that we thought it'd be a good time to try to go without the line.

So now we're home, no central line. No backup safety net. Kinda scary, but very exciting! If Joshua can prove himself this is the beginning of a new life for us.

Stepping out on faith.

That's what we're doing.

Praying, please God keep Joshua hydrated! Please let this be his time. We've waited so patiently for the past 5 years. I so badly want him to step forward without stepping back.

Please God.

A Successful Day in the Heat

Recently our family set out for our first family outing in a long time. Thomas was in town and we couldn't pass up the chance for the boys to see him life-size in person. Armed with plenty of electrolytes we were off.

In the past, a whole afternoon out in the heat would be a recipe for disaster for Joshua. In no time at all his eyes would loose their brightness, sink in and develop dark circles below them. His cheeks would look hollow and his lips would dry out. He'd barely be able to talk, not ever taking a full breath while hardly opening or closing his mouth completely. You could see it a mile away.

Dehydration.

For the longest time I had standing orders (and honestly, probably still do) to be able to give Joshua bolus IV fluids if I felt they were necessary. I had to on many occasions.

But this outing rewrote history for Joshua. He handled it like a champ. Never complained of being too hot, (the high was close to 90) never was extremely thirsty and ate a hot dog fast enough to put a grown man to shame. In fact he finished his brother's too.

Justin and I couldn't have been happier. It was so great for us all to be out together and not stop dead in our tracks for some sort of emergency. Don't get me wrong, I don't plan on pushing Joshua to the limits any more than that. But it's good to know on occasion his body can handle a little more on it's own now.

Thank you Thomas. What a day!

Don't Scream at the Sheep

Week before last when Joshua's pancreatitis symptoms were presenting themselves, I was unsure of why his behavior was so uncontrollable. He was having bouts of screaming coupled with moaning and groaning. Most of the fits were antagonized by the nurse or I trying to do the most harmless acts. Many times not even touching him.

Not sure about where this behavior was stemming from, I sat down and had the "Never cry wolf..." speech with him. I wanted to make sure he wasn't just acting out. Thinking he understood this, I was confident the only screams I'd be hearing were pain derived. So we acted on them, took him in to the ER and thankfully caught his pancreatitis before it go too adanced.

Which brings me to today.

Before I go into the bathroom here in our hospital room to shower, I ask Joshua, "Do you need to go potty?"

"No."

"Are you sure?"

"No, I don't need to."

"OK, I'm getting in the shower, don't scream at me telling me you need in."

"OK."

So, 5 minutes later, guess what I hear? Yep,

"Momma!" Like it's the end of the world.

Same siuation happened the day before only for me to hurry out to find that, "I don't have to go anymore, it went away."

This afternoon, I'm in the bathroom again and can once again hear his screams, which this time are loud enough to bring in his nurse. I'm out, sweeping him in the bathroom as quickly as possible. So, the nurse and I are talking about the series of events listed above and I hear this soft voice coming from behind the bathroom door.

"Mom. Are you talking about, Don't scream at the sheep?"

-----Yep, I can tell he got the gist of my story.

Good to know our children are listening, huh?

I am So Blessed

It stinks how sometimes it takes a series of tragic events for us to realize just how great we have it. Often times we get upset about the hand we've been dealt. Then tragedy strikes around us and we say to ourselves, "Whew, at least that didn't happen to me."

I've had so many trials to conquer in my life, but in the grand scheme of things they've been minimal. Tiny specks of sand in the endless coastline of sorrow. The crashing waves just barely touching. When there are those whose troubles are like the jagged boulders getting relentlessly beat by the tireless waves.

Ok, enough with the metaphorical mumbo jumbo.

My somber state comes from the bereavement of families around me. In the last few weeks, I personally know two families that have lost children to chronic illnesses and one that has lost their father. Some of this is hitting way too close to home. A little two year old boy very similar to Joshua lost his battle with short bowel syndrome. The longevity of this disorder paid a toll on his little body and it just couldn't hold out anymore. My heart aches for his mom.
I can't imagine.

Maybe it's being naive, maybe it's the ostrich syndrome, but I just don't ever go "there" in my mind. I can't think about how I would feel if the Lord called home our sweet boy.

Any of them for that matter.

But, when you're dealing with a child with a chronic condition, that particular child's state of health is understandibly foremost on your list of parental concerns.

Just think about it.

After days, weeks, months staying in the hospital, how do you pack up your things, including your child's dirty laundry, favorite toys and blanket still holding his scent.

How do you leave your child's lifeless body? The hospital bed? The hospital room?

How do you leave the Children's Hospital without your child?

How do you leave?

How do you go home as a family of 4 when you left as a family of 5?

His bed still unmade and toys left from play.

How?

See, this is why I don't go "there."

Oh, Lord. I know you have your reasons, please help us to understand. Please be with those families having to do just what I've described. Please God, spare us from having to live through such pain.

I wish I had the right words for my friend. I'm sure everything most of us can think to say sounds so cliche. So empty.

"He's in a better place."
"He's not hurting anymore."
"You did everything you could've done for him."

Those are exactly the only kinds of things I could think to say to her.

In a time such as this, all we have is our faith. I did tell her that I believed whole-heartedly that when he was to pass on, no doubt, he would be in Heaven, no longer suffering. She must trust in God.

My faith in the Lord encourages, stabilizes and strengthens. But, that having been said, I know that the only way I could make it through something like what these two moms are dealing with would be to conquer one battle at a time. And fall apart in tears between them.

So much of our complaints in life are about inconveniences, truly. Even with my son's illnesses.

It's inconvenient to have to stop my day and contact the doctor.

It's inconvenient to have to pack our bags and head to the ER.

It's inconvenient to have to wait 5-6 hours in the ER before the doctor finally decides what we're doing.

It's inconvenient that the room we're being admitted into, isn't ready.

It's inconvenient that we can't stay on our favorite floor.

It's inconvenient that we will be in house for over a week.

It's inconvenient that we have to drag a pole around the hospital so my son can ride his tricycle.

It's inconvenient that we were in isolation for two days.

It's inconvenient...

Shame on me. I'm so blessed.
I know two families right now that would LOVE to have these INCONVENIENCES.

I am so blessed.

John 14:14-16
If ye shall ask any thing in my name, I will do it. If ye love me, keep my commandments. And I will pray the Father, and he shall give you another Comforter that he may abide with you for ever.

I have a Comforter.

I am so blessed.

Pancreatitis, party of one.

This winter has played havoc on the health of my boys, all of them. We've battled RSV, stomach viruses, strep and even allergies. So, last week when Joshua started running a fever and was lethargic with no appetite, I wasn't too surprised. His brothers both suffered from bouts of tummy trouble recently, so I really believed Joshua was coming down with one of the many bugs running amuck. Thursday morning, however brought a whole different twist to things.

Joshua has the tendency to be a little stubborn, it's the character trait that has helped him do so well in his illness. Stubborn didn't quite describe what his nurse and I were dealing with. He was being so difficult. Then the screaming began. Not long after the decision to pack up and head to the hospital came with heaviness. It's always a tough one to make. Every time now I pack a bag knowing very well we could not be returning home for days. So with bags packed, we headed in.

As VIP frequently fliers, we head straight back to the ER exam area. I guess there are some perks to being chronic. Still, the waiting game is exhausting. A blood draw here, abdominal x-ray there. Wait. Wait. Wait. Joshua's feeling much better by 7:00pm when the doctor comes in with that look on his face. "Well, it's Pancreatitis."

Oh, man. Didn't see that coming. My heart sank. I felt so bad for discounting his screams as anything but pain. Holding tears back as best as I could, I begin the formation of our game plan. Now what? He was doing so well. Eating whatever he wanted. No tube feeds. TPN only 3 nights a week.

Now, I have to make this little guy understand why he can't even have water by mouth.

I'm crushed. Devastated. Helpless.

"Mom, I'm hungry."

Ugh! What is a mom's natural response? It's our job to meet those kind of needs of our children and I can't do anything about. Frustration doesn't even begin to describe it. I get so tired of coming so far and gettting so close, just to be thrown back to step one all over again. Why?

I know God has a plan. I don't begin to doubt His order of things. There are big things planned for our little trooper. I ask that He also use me, if only to be a comforter to someone else living this roller coaster lifestyle.

The Lord absolutely has his hands on Joshua though. That's what I have to stop and remind myself. So, pitty party over, be strong and lead on. He's following my lead and I know if he sees me down, it's not going to help him at all. Joshua will get through this, no doubt. He's already handling it much better than last time.

Joshua's lypase levels have dropped from well over 4000 to 660 already. Another 160 or so and we will try some Pedialyte. It's a slow process and obviously some dietary changes are going to be taking place. Trial and Error. Seems to be a reoccurring theme around here.

But, were pressing onward. With the Great Physician on our team, there's no doubt we'll be victorious. We continue to pray and ask that everyone remember us in their own prayers. We need God's healing hands just as much now as ever.

Here We Go Again...

So a month has past since we discontinued Joshua's tube feedings. All is well. He's still eating quite a bit by mouth and tolerating solid food, for the most part. His tummy looks so much better. Not nearly the bloating that he'd been experiencing. That in itself is a miracle! I NEVER dreamed that he could make it on solid oral feeds alone. I was prepared for him to depend on tube feedings, at least nightly, for the rest of his life. This is still hard to wrap my head around.

Yesterday I received a phone call from the GI's office. Joshua's labs look great and they want to cut back his TPN to Monday, Wednesday, Friday. Really? This is amazing. But, this means Joshua goes under a microscope. He'll need weekly labs, we're monitoring his caloric intake and we closely watch for any signs of dehydration. That's the real booger in all this. We've been down this road unsuccessfully before. Joshua can get so dehydrated so quickly. It's been almost a year since we tried to wean him off TPN and we landed in hospital for about a month.

Please pray specifically that Joshua can handle such a change this time around. It's so difficult for his body to maintain it's fluid levels.

Let Me Catch You Up to Speed

I know it's been so long since I've updated this blog. I hadn't had much internet access until just recently, but I should be more consistent now.

Joshua's doing really well. A month ago during a routine visit, his GI suggested we hold his tube feeds to see just how much he'll eat my mouth. For five days we kept track of everything and logged his caloric intake. He was averaging about 1000 cal/day. For his age that is great! Not to mention he still receives his TPN for 10 hours at night.

So now it's been a month and he's still doing OK. A little upper respiratory virus has slowed him down a bit, but for the most part his still maintaining his weight. His tummy is not nearly as bloated as it has been in the past. Not having to lug his backpack around has been quite the incentive, too. Any steps toward "normal" is so wonderful. I pray this cycle can continue. I continue to keep a watchful eye, not out of pessimism, but rather experience. Our roller coaster ride is far from over and we can't take anything for granted.

So little by little, inch by inch.

Marching on.