And Back Home

We did not have a good Omaha visit this week.  Seems like there are too many things competing for Isaiah's attention.  He's been in the hospital at least one week per month since we were released.  The team doesn't want to put a port in due to infection issues, we don't want him in the hospital so he can get through 2nd grade.  So we basically were discharged with nothing changed except his lab numbers looked better when we left.  So now we're waiting to see how he does the next few months.  The ostomy take down is still scheduled for June, but little Ike has to go to summer school to catch up on his math.  I think we'll leave it up to God and do what He leads us to do...

What a Success!

How awesome God is and how awesome his people are! We had a great time today meeting all of the Fire District and SHPD folks and their families. We just want to say "Thank You" to all the community who showed up and gave support for our little guy. As you can see, he loved the boots (though he's not moving very fast) and the framed "Officer for a Day" got a big smile.

Isaiah is doing rather well today. Maybe we come home tomorrow - Maybe we stay for another week. It's still up in the air but our little guy is very happy today!

And again, nothing changes

It seems as if the team is in limbo mode (and I don't mean the dancing kind). He had a barium study done of his lower instestine to see how much is past his current ostomy. He currently has 11cm of small bowel and 10 cm of large intestine - that's it. We're talking meer inches of sections. So no one is sure how much it would help to have him get his take down now vs. coming home with a central port. Big concern there is he is so immuno-compremised a line infection could hurt him badly. So no one is sure of the best course of action.

Stay tuned. Next week should be more interesting!

No News is Blah!

Sooo, we're hanging out while the team decides what to do. There is talk of a port for IV nutrition/hydration while we're at home and there is talk of doing the ostomy take down while we're here. We'd prefer to just get the port and have him back home to finish school. But no one has a good handle on his dumping/outputs right now, so we're in Limbo - which is never good.

Also, just as a reminder! The volleyball game is this Saturday! I hope you readers can all attend, as it doesn't look like we'll be there :(

We really appreciate everything and know that God will provide us with the right answer.

BACK IN OMAHA!!!

Well, we're back in Omaha. Isaiah's liver numbers have never really come back down with all the at home interventions we could do. So a weekend full of labs, measuring outputs, and hospital behavior await. We just got up here and got checked in, so it's been a long day.

More updates to come, as well as possible Liver/Small bowel biopsy and x-ray's. Stay tuned.

We really hoped to be home for the fund raiser next weekend and hopefully we still will be. Isaiah doesn't have much luck, though as he's been in the hospital each time we've tried to do something . . .

Liver Numbers are up

So, the trip yesterday was pretty uneventful. We had labs at 0730, Trip to Omaha 0800 - 1100, Cytogam infusion 1130 - 1500, Clinic appointment 1515 - 1630, and Trip back to KC 1700 - 2000...

Wow. Anyway, after all that we have found Ike's liver numbers are staying a bit too high for the teams liking. We're waiting on yesterdays results and seeing if they are going to want to do another liver biopsy - just in case. The Ostomy takedown is still being scheduled for June so we can get him through school. The biopsy will be an overnight stay, but for the most part should be pretty quick.

Stay tuned...