Roller Coaster

And we're off... Click, click, click. Up, up, up. Uh-oh. No one told me it was THIS high! OK. I'm okay. This is great! Everything will be just fine right here. No, no, no, we're going down. But I'm not ready!!! Ah-h-h-h!

And so it goes.

We should all be used to this by now. But, we're not.

You may have guessed by now that Joshua's labs aren't looking great. His enzymes are up yet again. Tomorrow we're have an MRCP done to find out more what is going on. If that is not conclusive, we'll be having an ERCP done and at that time they can actually open up the pancreas ducts and hopefully release some of those built up enzymes.

The GI says that it's normal for kids to have a hard time getting over pancreatitis and the rise and fall of his lipase enzyme is normal.

In the meantime, hold on tight!

And the culprit is...

Pancreatitis in children is normally caused by a virus. But, with children like Joshua there can be many other reasons. It's very likely that one of the newest medicines he was receiving was the cause of this extrememly painful condition. So much for that one. It wasn't the cure-all anyway. But you think you're doing something that's going to make a huge difference. That the next med is going to do the trick, the one you've been waiting for. The key to unlock this mixed up puzzle. Only to find out, it's not the one and in fact has only created more problems. Ugh!

So, back to the drawing board.

The one cure that never backfires is our prayer that the Lord will heal Joshua's body with no medical explination. I know it's possible and it's been my own prayer since day one. Please join me in this plea.

I long for the day when I can look back and all the tubes, lines, nightly TPN mixing and infusions, feeding pumps, backpacks, dressing changes, ER visits, hospital stays, supply deliveries, midnight trips to the bathroom, midnight bedding changes and the sinking feeling in the stomach with every thermometer reading over 99 are all a memory - a thing of the past. I read postings from moms who live this reality. Their children are functioning somewhat "normally" now. It's all a memory to them. That will be a great day.

But today our reality is different. And that's okay. One day at a time. One challenge at a time. As my dad always says, "Inch by inch is a cinch, yard by yard is hard." So, today's inch is a hospital stay and working through these tummy pains. Tomorrow's is yet to come.

"Boast not thyself of to morrow; for thou knowest not what a day may bring forth." Proverbs 27:1

Pancreatitis

I apologize for being such a poor blogger lately. Time and internet access has been liminted lately. As many of you now know, Joshua's recently suffered from a painful case of pancreatitis. His pancreas is hugely enlarged and inflamed. Enzyme levels which should normally be anywhere from 25-120 were 5,800. Today they're down to 1,800. The treatment is resting the pancreas by holding any food or drink and pain management. By now even Joshua who rarely feels it, is hungry. No one can eat in front of him, it would just be too cruel. We are still awaiting word from the GI as to what happens next, or how it began in the first place. I don't ever want to see him in so much pain again. It kills me.

We are asking for prayers for a speedy recovery and as with every set-back, that something productive come from all this.

Grace

Nothing is harder as a parent than to force your screaming child to do something you know is medically necessary. Yesterday a rectal monometry was preformed on Joshua. Yes, it was just as tramatic as it sounds. As a four year old, Joshua has had to endure so much more than many adults. He's always been so strong and wise, sometimes to a fault. He's got such a unexpected understanding of all that goes on - to him, for him, and in him.

We won't know how the test went until at least next week, but right off the bat it looks promising. Even I could see the movements that we were looking for in his colon. Just need the formal report stating that we can rule out Hirshprung's.

Sometimes the best treatment is to rule out possible conditions, especially the worst possible scenarios. In the event that our fears come true, it is so amazing how God can give you the grace to process it, accept it and prepare for the next move. But, until then I like to push them way far away from my thoughts. I think that is just as healthy too.

For now we remain in hospital, waiting. Waiting for the assurance that he's tolerating the new formula he's been put on. Waiting to see if surgery is in our future. Waiting...waiting takes a lot of grace. Lord give me grace.

My Head is Spinning

Most of you know that we've spent the last four days in Pittsburgh for a small bowel transplant re-evaluation at Children's Hospital in Pitt. This is the second time we've been up there and it is quite an experience. They've got such a wonderful hospital and team, it's just an extremely intense stay. In less than four days we had a sonogram, upper GI - small bowel follow through, saw 5 physicians, 1 social worker, 1 educator and 1 dietitian and 1 wound care specialist.

SO, needless to say, my head is spinning!

There's so much to take in and process. They're making a few changes and suggesting some things that hopefully will make a difference. This week we should have another monometry test done, this time on his lower bowel. There's a possibility that a biopsy needs to be taken from the colon as well. The surgeon up there also mentioned that a STEP procedure could be beneficial as well.

Changes that are being set in motion already are: a new formula, discontinuing of probiotics, using ethanol to "lock" his central line a few times throughout the week to hopefully cut down infection and I got a great list of do's and dont's on his diet.

All in all a very successful trip.

So many people have made this entire experience possible. In efforts of not missing anyone, Justin and I want to just publicly thank our amazing family, friends and hospital staff here at Cook Children's. You've all gone above and beyond to help out Joshua and the rest of our family, whether it be monetarily, emotionally, taking care of arrangements or by keeping Caleb and Stephen in this tormoltuous time.

Thank you, thank you, thank you!

And a big thanks to 5 South for always making us feel special and at home!

A Whole Lot of Shakin' Goin' On

Today, the first day of June, finds us still in hospital. We are attempting to get Joshua back up to full strength feeds (right now he's taking half pedialyte, half elemental formula.) He was doing great over the past few days on just Pedialyte, but today the tides seem to be turning. His GI is focused on the amount of fluid that seems to be hanging around in Joshua's gut. It's pretty funny to see that great, extremely intelligent doctor do his slosh test. With his hands around Joshua's mid section he shakes him gently back and forth to listen for an overabundance of residual fluid.
He called this afternoon to see how Joshua was doing on the more concentrated formula and literally asked me to shake his belly and let him know if I could hear anything! Unfortunately, Joshua didn't pass the "slosh test!" But, the good doctor has had some ideas and I'm anxious to see them in action.

Once again, trial and error, trial and error!

We're thinking now that for some reason his digestive tract when fed with nutrition is actually pulling water away from the intestinal walls. It's depleting Joshua's body of even more fluid than normal, leaving him more dehydrated while taking in feeds than when not. We'll know more after some further testing.

But in the meantime, I expect there to be a whole lot of shakin' goin' on!

You know your kid's chronic when...

As many of you know we are once again patients of Cook Children's. Cant' say how much we love this place! Joshua was admitted Wednesday night after suffering another bad day of dehydration. He required two bolus saline infusions at home this week and still just couldn't maintain hydration.

Still don't know what's going on.

Our doctor comes on this weekend so hopefully we see some action. I'm hoping he'll have some spectacular idea to try. But, if not Pittsburgh is just a flight away. We're waiting for insurance's approval and we'll be able to get up there in June. It's been two years since we lasted visited them, I'm anxious to see what they think and if they have any new ideas.

So, back to the subject. We were admitted Wednesday and our favorite floor was full. So we ended up somewhere new. Don't like somewhere new. There's nothing to complain about, it's just new.

Today a very nice volunteer came into our room and asked if there was anything she could get us. In hopes to rejuvenate Joshua's spirits, I asked for the red tricycle he's come to love. She came back with it about fifteen minutes later. She said they must really like him up there, the child life specialist knew exactly who this was for and said to tell Joshua Hi!

So, out and about we decided to visit our favorite floor. It was once again like coming home. We were greeted with smiles and hugs. They wanted to know where we were staying and were sorry we weren't with them. Back in the room, a little while later, the charge nurse from the other floor comes into the room and asks if we want to move to her floor! Without a doubt!

So we pack up all our things and move out. The care partner and nurse that helped us move understood why we were changing rooms the minute we stepped onto the floor. In our room we were greeted with the sweetest Welcome sign, signed by many of the staff members. Ahhh, Home!

So, you know your kid's chronic when...