Thursday, October 28, 2010

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

Sunday, October 24, 2010

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.

Saturday, October 23, 2010

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.