Friday, May 28, 2010

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...

Monday, May 24, 2010

What goes up...

The doctors in Pittsburgh asked that Joshua have a barium enema before we headed up there these upcoming months. We were able to get that scheduled today. Thankfully Justin was available to go with me. To say the least it was quite a traumatic experience, it was pretty hard on Joshua too!

Cook Children's has such a wonderful group of angels called Child Life Specialists. What would we do without them? The Child Life employee that was assigned to Radiology today was a God send. She really made Joshua prepared for what was going to happen. He knew exactly what was coming next. Unfortunately, he was still very, very upset. Screamed and cried throughout the whole process. Needless to say, he got himself a $15.00 Gift Shop Matchbox car out of this deal!

The official report is still in work, but unofficially his large bowel seems to be functioning normally as well as the section of bowel between the small and large intestine. That's the area of concern. One answered prayer down...

Keep sending them up!

Tuesday, May 18, 2010

Pittsburgh or Bust

We had Joshua's follow up visit with GI yesterday. He's at a loss at this point. We have pretty much run out of options, other than just continue on as we are. There's a chance Joshua could have another STEP procedure, where the dilated portion of bowel is tapered down. This process makes the width of the bowel smaller and actually lengthens what's there. He's had 3 STEP procedures so far.

BUT will it help?

That's the million dollar question. We've got all the Texas pediatric surgical gurus collaborating. Our GI also has a call into Children's Hospital of Pittsburgh. It's very likely that we'll be heading that way soon. They've got such a well experienced team that is just exceptional at intestinal rehabilitation.

Maybe there's something else that we can be trying? We're willing to go to the ends of to find out. Just praying we don't have to go up there during the winter months! Hate the cold!

I'm a little uncertain about how I feel. Having some mixed emotions about the whole thing. The thought of them telling me there are no more tricks up the sleeve, is nagging me. But, we'll cross that road when we get there. With the Lord's guidance all the right decisions will be made. Until then, we'll continue to do what we've always done. Keep Joshua as healthy and strong as we can.

That means we watch him as close as we can, ready to catch a bout of dehydration or onset of a line infection at the first sign. Please keep him in prayer. His life is such a sensitive balance. I've seen him go from a bouncing, laughing, full of life, to a dehydrated, nauseated, lethargic little boy in the matter of 12 hours.

I get asked all the time, "How's Joshua?" I've often found myself saying "He's doing great today." or "He's having a hard time, today." Many times it's a different answer daily. One day at a time.

"Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself."
-Matthew 6:34

Wednesday, May 12, 2010

"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.