Home Again, Home Again...

Looks like tomorrow's the day! Joshua's been infection free for 72 hours and the doctors think it's time to head home. Hooray! We are so ready. It's always so hard having the family split up like we are. Joshua keeps telling me, "I miss Stephen." Wow, that speaks volumes. The two are constantly at each other's throats!

I guess I shouldn't complain though. I met a girl from Lubbock here with her son. She's got other children at home and no one she knows here with her. She's a trooper though. I'll keep her name annonymous out of respect, but please say a little prayer for her.

I met another family that's moving several states away to persue treatment for their child. I can't image what it would be like to be so far without my family, church and friends around me. Just goes to show, there's always someone who's having a harder time than you. We can sometimes get so wrapped up in our own situations.

Tomorrow, WE get to go HOME. *Sigh* Thank God. For how long? Doesn't matter.

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

Quality Time

We had such a great day today. It may have started out a little rough, but recovered beautifully. My mom came to visit this morning. Joshua always enjoys Kackie and the "purprises" she brings. Then a little later Daddy, Caleb and Stephen came to visit. They had come from church and were dressed so nicely. What a treat! The boys played well and napped too. Justin's cousin Sondra, aka Goober, dropped by as well. Never have I known someone so loyal and faithful. She always makes it a point to see us when we're in hospital, never empty handed either! Such a sweetheart she is! We also had a visit from Mr. Roy and Ms. Debbie. Thank you all so much for the special treats and the time you took out of your day to visit us. What a difference it makes.

When it came time for Justin and the boys to leave, Stephen began to cry. He realized Joshua and I weren't going. I was buckling him up in the carseat out front of the hospital and Joshua reached up and padded his hand.
"Here I am, Stephen." he said sweetly. He stepped up into the car and kissed Stephen's forehead. "I love you Stephen."
"I wuv you too." Stephen replied through sniffles.

I teared up instantly.

Why not?

Once again our favorite hospital floor is home. I guess if we have to be here it couldn't be any more pleasant. I believe this is the 7th admittance this year. I could be off. What a year so far. Joshua has a new central line infection, the third type in 6 months. Each has sprung from bacteria in Joshua's gut, each a different strain. Ugh! After 72 hours of no growth on his cultures, we will be allowed to go home.

On a lighter side, the Pancreatitis is finally subsiding! We'll have labs drawn in the morning to see where we are, but as of thurs. his Lipase was 140. Woo Hoo! He's been able to eat by mouth for a week now and we are re-starting his tube feeding now.

Speaking of tubes, I neglected to post anything about his last stay. Three weeks ago, Joshua began running fever. Line infection. We had just gotten over his 10-day stay in hospital and here we were again. But on the last day, Joshua's GI placed a GJ button. It's really cool, as far as gastric adaptations go! It's a little bigger than his old button, but has a gastric port (goes right into the stomach) and a J port (it is a tube that runs down through the stomach and into the small bowel to the jejunum). We could feed him while bypassing the stomach still allowing the pacreas to rest. It's worked ok so far.

However, the used a camera to assure everything was placed correctly and his GI was floored by the amount of standing fluid and the size of his small bowel. Even having been NPO for 6 weeks, it was still huge. So of course I ask him, "What's the solution?" He tells me there is no solution outside of transplant.

It's kinda funny, everytime I hear a doctor say the word "transplant" I go somewhere else. My mind just shuts down instantly. Honestly, I just can't go there right now. That is not an answer. It's a set of all new problems.

A little girl I've been following was not even one year from her transplant and passed away last month. I shutter to think...
My prayer is that there IS an answer out there. Something we just haven't tried yet. Actually my screaming, wailing cry out to God prayer is that for absolutely no reason the Lord will heal Joshua's intestines. The simple problem of not being about to absorb nutrients from food is such a stumbling block. We take eating for granted. Shame on us! We just assume what we put in our mouths, chew and swallow will make it's way through pulling all necassary nutrients out along the way.

I don't think it's unrealistic to ask God for a miracle. All things are possible! Oh, God. Please lay your healing hands upon him and for no reason, fix his tummy. My amazing friends and family, join me in this petition.

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.