Our Fundraisers

#1 You can join Isaiah's FIGHT on facebook and donate with a debit/credit card. CLICK HERE TO GO TO ISAIAH'S CAUSE on facebook.

#2 You can mail a check to their church-write ISAIAH somewhere on envelope or in the memo of your check:

Lifestream Christian Church 204 East Main Street Gardner, KS 66030 Phone: 913-856-8088

Sunday, January 31, 2010

And we're done...


Well, that went OK.  Dr. Langnus stated he found a couple of old stitches from previous surgery that the body decided it didn't want there anymore.  So after draining the pocket, he said things looked good.  Now we're waiting on the lab/culture results to make sure we're treating with the correct anti-biotic and hopefully recovery will go well.  Isaiah was in pretty good spirits considering.  Ike said the pain he had now (after surgery) was much less than the pain before.  More updates to come as more information becomes available.

Quick Update - Surgery

Isaiah went in for surgery at 1800hrs.  They discovered an abcess right above his bladder that they believe is causing the pain so they want to get it drained now.  I'll post another update as I get the information.

And we're back to Omaha...


As you can see, Isaiah is holding his "cup" close to prevent any misses as we journey back to Omaha.   No word on what's going on, but Isaiah woke up around 3am and started vomiting and complaining of stomach pains.  This is the first time since the transplant that we've had any issues like this one.  Usually it is not a good sign when he is vomiting, so we're a little worried.  We called the liver team at 6am to see what they wanted to do, and here we are traveling.  We arrived around 1030am and got checked in.  I haven't seen him in this much pain since the old transplant was removed and we were dealing with pancreatitis.  He was given some anti-nausea and some adavan after we got into the clinic.  He's really sore around the bottom of his original suture area and it's oozing, so there may be some infection brewing.  We had a CT done as well as blood work, so hopefully we'll know something today, but more like tomorrow.  Keep the prayers coming, and I'll update throught tomorrow unless something happens tonight.

Wednesday, January 20, 2010

Back to School!

We're back home!  We were told the growth was granuloma and wasn't serious at this point.  Basically it looks like the small intestine was trying to "heal" itself as it's not supposed to be outside of the body.  So the team removed the growth and now we're home.  Seems like this week was longer than just 3 days so far . . .  Other good news was Emily came by to see us!  She looks really good.  We were going to make the rounds on the ol' 6th floor, but we got the call we could go home (sorry guys!)  Now if we can just get through 2nd grade math . . .

Tuesday, January 19, 2010

Quick Update: 1 more day

He has completed his biopsy this morning, but Dr. Grant wants us to stay and wait for the pathology results.  Nothing more to report, except the "nodes" have gotten bigger and are a patch now instead of the 4 individuals seen in the previous picture.  Hopefully we'll have good news tomorrow and get the boy back in school!

Friday, January 15, 2010

T +13 and then . . .

What are these?  We discovered new little bumps on Isaiah's stoma tonight after changing his ostomy.  I send these pictures along to the team today and they said they need to take a biopsy and get labs.

And just when things were getting back to "normal" (normal for us, that is).  So instead of getting back to the routine this week, we're making plans on being in Omaha for at least Monday - Wednesday.  Hopefully it is something we can treat at home, but not sure yet.  Keep praying...

Tuesday, January 5, 2010

And we're home.

No pictures today, but everyone is happy to be in their own beds!  We were discharged today and have made it home prior to the next round of snow.  School has been cancelled for tomorrow, so winter break has been extended by one day!  This will give us time to work out his new schedule and to decompress the two car fulls of stuff.  I guess you could say the "easy" part is over, as now we have to involve a few more people to help watch the little guy and keep us informed of how he is progressing.  School will be the biggest new challenge, but he has quite a few people looking out for him there.  We are in the process of transferring care to new providers here and we have follow-up appointments with his secondary care here at Children's.

God continues to watch over our little guy.  He has made it through so much, and continues to improve.  I would never have thought we would have made it back "early", almost 2 months earlier than last time (and we had to fight for that!).  Now we just need to get back into a rhythm at home, and maybe we'll get to relax...

Saturday, January 2, 2010

Merry Christmas and Happy New Year!

Sorry the update is overdue, but we snuck home for Christmas Day!  It was awesome.  Isaiah was sooo happy to get to see all of his family over the holiday instead of having to stay in Omaha (no offense) :)  We had a wonderful holiday and the Team let us go home for a couple of days for New Years.

We also got to find out - we may be coming home! (and I stress may)

Isaiah is scheduled to have another infusion on Monday of next week.  We have to coordinate care and medications and then I think we'll get to go home just in time for school to start on the 6th!  We've started the packing process this weekend and it's amazing to see all the stuff we've "gathered" since starting here back on August 31st.  It's hard to believe it's been 4 months and going home seems so surreal.

We had one more surgery last week as well.  They removed his ear tubes since they were clogged.  So now he has patches that we'll wait to heal and follow up with his ENT at home.  Thanks to everyone who helped out this week as well since I forgot his formula in Omaha.  Everyone has done a great job making sure the boy has the supplies he needs.