Sick AGAIN...

So, Isaiah is now running a temp. of 103.5. I just packed a bag for him and he and Aaron are leaving for Omaha. :(

I will stay here to work and take care of Percy. Not likin' this, it's raining and Aaron and Isaiah won't get to Omaha until about 2:30am.

Isaiah is a big brother!!!

Yes, it's true. We have adopted again...this time he's furry, cute and about ten weeks old. Boo named our new addition "Perseus"-a greek mythology figure. We just call him Percy. Percy is our clearance puppy-we love him dearly.


I have been trying for days to get a pic of Ike and Percy. A seven year old boy and a puppy together do not equal quiet moments. Ike has learned that it is time to grow up into a big brother and take on some responsibility. He gets to move up in the family hierarchy and let Percy get all the attention for now. Percy follows us everywhere we go and he is darling...just for the record, I wanted to call him "Joey". He looks like a baby kangaroo-all long, gangly legs and feet with giant satellite dish ears.

So, about Ike. We just got back again from Omaha late last night. He has issues with one of his drains and it's difficult to fix. He ended up needing to stay in the hospital and having it fixed under general anesthesia. But, we're OK now and so glad to be back home. The good thing was that we got to catch up with his nurses. We missed seeing his friends and their families, but we spent all of our time waiting for the procedure and sleeping or vomiting.

So glad to be home. Now we get to pack cause WE SOLD OUR HOUSE. Yes, we are moving. We desperately need a different floor plan for Isaiah's needs-after the next transplant that need will be even more intense. We are going to look for a rental house for a little while here in our town. Then we can save more money for moving and buying a different home. I hope it doesn't take long. Wish us luck and pray for God to show us the right home at the right time. We don't want to pursue anything that The Lord does not intend for us-we think we must be on the right track so far, because we sold our house after about a week on the market. It was shocking and scary all at the same time. We are SO taking a leap of faith here.

Everyone take care!!!

Back in the hospital...

So, Isaiah has been in the hospital since Tuesday. I know, very tardy in actually telling anyone.

He was (is?) bleeding somewhere internally and now his Gastric drain has been removed(long story). Sepsis vs. Peritonitis was initially suspected as the culprit, but looking at him today, he's just not sick enough...if that were the case, he would have been a lot closer to, uh, "you know", the whole permanent separation thing. For you medical junkies-in addition to acute infection and fever, hgb was 7.0 and dropping...He got packed red blood cells in Omaha on Thursday night and was feeling better on Friday. He should get a new drain placed this weekend or Monday. He's been on IV antibiotics since Tuesday so that has definitely helped out-Vanco and Cefepime does a body good, right?

When we are in Omaha-and it IS me this time-Aaron is home working, I either can't sleep or want to sleep constantly. Note: 3:30am posting time. Isaiah always seems to ease his way through all of this, so I've no reason to doubt that he will sail through again. But SO not fun. Life does not stop for illness, I've learned. Just thought since I was sitting here with nothing to do except listen to Boo snore, I would post and update everyone.

Watching the pot boil...

So the waiting begins. Isaiah will be listed tomorrow, June 3, on three separate lists. Liver, pancreas and small bowel. His kidney function is still good, but there is a possibility of having to add a kidney to the list. We met with the financial department as part of our transplant evaluation. With three organs being transplanted, it's a cool million dollars. $1,000,000.00-unbelievable. But my boy is priceless.

You know, it's really like waiting to have a baby. We will have bags packed and ready to go at any time. It could be two days, it could be a year. Who knows??? And then-living apart for at least six months begins (six months is the minimum-we are getting three organs so I doubt we will get easy time). I will come back here after the first few days and Aaron will stay in Omaha. We may even get to see each other once in awhile.

Isaiah and I finally had "the talk" about where his new parts are going to come from. He was getting upset about the delay in getting his transplant and wondered aloud what was taking so LOOOOONG. Of course he hadn't thought about where those organs come from. I explained that someone has to give those to him when they don't need them anymore. "We have to wait for someone to give you their parts and they have to be your same size", I said. "Will my friend ***** give me THEIR organs?", he asked. "No", I said. "How do you know??", he asked...I explained that his friend was still using their parts for now. I didn't think he needed to know that a child will die for him to get his new parts. Not yet, anyway. Maybe afterward. I heard him telling his sister later, "MOM SAID that I am going to have someone else's parts inside me after the transplant". As if he thought no one would believe him or we had played a cruel joke on him. Geez...

We did have a decent time in Omaha. It rained most of the time, but we tried so hard to enjoy ourselves anyway. If I can find the camera, I will add the pictures. After we returned home Friday, we went REALLY nuts and took the kids to Worlds of Fun. Isaiah was indebted with gratitude. I figured out how to keep his central line dry while we went on the Fury of the Nile. He thought I was some sort of miracle worker. The kid can't even take a bath or swim so it was a HUGE deal to go on the ride. Last year he wasn't quite tall enough and got dissed. We are just trying to enjoy as much as possible on each day. We know how hard things are going to be coming up. Brutal would be an understatement.

So, that was our big vacation for the summer. Five days of transplant diagnostics, Omaha Royals game, Omaha Zoo and WOF. I know, we live a life of excitement and intrigue, right???

Getting ready to leave...

So, I'm trying to finish laundry, pack and clean the house before we leave for Omaha. It's time for the second transplant evaluation. We have three "fun-filled" days of testing and appointments (including a psychological evaluation, yikes!!) and then at the end, they sit down with us and say, "We are going to officially list Isaiah on the transplant list for liver, pancreas and small bowel." Then they make a few phone calls, fill out paperwork and it's done, just like that.

Then the waiting begins. There is a balancing act between your age, how long you have been on the list waiting and your current medical status. There are extra lab tests we will start getting now in addition to current lab tests that I get at home. We have to check and see if his liver is still able to produce blood clotting factors and basically, how close it is to shutting down completely. Obviously, we don't want him to bleed to death before he gets transplanted and the IV nutrition that he gets constantly is very hard on the liver too. It's really a balancing act. We hope that Isaiah will be at home with us up until the transplant, but sometimes, the person waiting gets very sick and has to be in the hospital well before they actually receive the transplant. We are ready for that, too.

We've just been trying to live as normally as possible, working and taking care of our boy. It takes a lot of energy and we are so tired. BUT, its always better than living at the hospital. Don't get me wrong, they have good food and all, but you know...OK, this will crack people up. Sadly, the transplant evaluation is our big vacation for this summer. I am excited (in a pathetic sort of way;) because we are going to try to go to the zoo and the Omaha Royals game. Wowee. Makes you think I need to get out more, right??? At least Omaha is a nice place to go.

Will keep posting, now that we are back in the medical stuff again.

Back on the face of the earth!

Our family has been CRAZY busy for the last couple of weeks. Aaron and I are working like crazy. Tater has had dance rehearsal every night and Boo has had a few cheerleading meetings and uniform fitting for next year. Aaron and I are beyond exhausted. We have just been struggling to have the energy to do the bare minimum. But I'm done whining now.

Isaiah has had this vomiting thing that has been completely out of control. Lots of pain and retching several times per day and sometimes ALL afternoon and evening. It kind of ran our lives and schedules because we couldn't take him anywhere when he was feeling sick. We felt so bad watching him just be sick over and over. Nothing to do for it except rub his back and tell him it will be all right.

I think we fixed the problem on Thursday. We went for a checkup in Omaha and they changed the stomach tube. Suddenly, about 100ml of nasty, brown stomach drainage came out. Gross!!! After that, he has been mostly fine. If he wasn't vomiting, he has been sleeping. It is not uncommon for him to come home from school and go straight to bed. Then he may or may not wake up before the next morning. Between that and the vomiting it made getting anything done nearly impossible for him and the rest of us.

Now, Isaiah is hungry all the time. He wants to eat BADLY. And he can't. How awful is it that??!! We worked so hard for so long to teach this child to eat and enjoy food-and now we are telling him that he can't eat. Not even a morsel. It's torture for him and for us. He sits silently watching us eat and the tears start to fall. We can't keep him from eating with us because then he will forget how and will lose the drive, not to mention the social implications. After the transplant, he will not want to eat if he isn't around it now. The best we can do is offer smells of food he likes and if he wants to, he can lick something. I even told him that he could chew up food and spit it out. We haven't gotten that brave yet. We are both too afraid that his tube will clog. Soup is about it and he is tired of that.

Isaiah's softball tournament was yesterday. It was a blast. We got to go four hours-then we had to leave and get the boy's IV stuff hooked up. We all slept great last night. Somehow I ended up sunburned. Unbelievable since EVERYTHING I put on my skin has sunscreen in it. Oh well. It sure was fun. Most of the kids stayed in the "bouncy house" and had a blast. Got some great pics to show. Of course, a HUGE thanks to all who participated and helped organize. Robin Haenisch put the whole thing together, Toby Orth got ahold of the giant grill AND cooked, Taylor Myers put in a HUGE amount of hours at the bouncy house. It ended up being more babysitting kind of stuff and she stuck it out in the sun all day like a trooper. It took more people than those mentioned for sure, but I can mention these guys off the top of my head. Of course Isaiah spent ALL of his time in the bouncy house. Thanks be to God-no tubes got ripped out!!! I just had to let him have some normal kid time...

Back in business...

Well, we got our boy back on Saturday afternoon from the hospital. He's pretty much OK, but he did miss out on an incredible pancake breakfast in his honor!!!

The turnout Saturday morning was AMAZING...over $5,000 raised for Isaiah. When God does something, he goes all out, right? I don't even know what to say. I made a total fool of myself crying off and on. I saw so many people I've never even met. I met people I've never seen but will see again. I visited with friends I haven't seen since high school. I even got to see Jenni-she was in town for a homeschoolers conference!!! It was a pefect and mind blowing day. All for this little boy...he smiled so big when I showed him the pictures from our camera. He was thrilled to see his classmates, educators, family, church friends and family. He loved it that a whole table of firefighters were there in his honor and MAD that he didn't get to see their fire truck. He's all boy you know...

I have so many thoughts about it all but I just can't seem to express any of it adequately, then I just get teary eyed. Isaiah's entire school and the community just really showed so much support and put so much of themselves into this fundraiser. Here I go, the tears are flowin'. Just can't help it. I look at Isaiah irritating his sisters nearby and I'm so thankful that he is here and has so much support. We are not alone.

***Thanks to everyone involved!!!!***It took so MANY people to pull it together, but I thought our blog readers would like to know that Isaiah's first grade teacher, Mrs. Joles (and her husband), and his room mother, Katie Gillis got this whole ball rolling and did so MUCH work. Would it interest any of you to know that I NEVER met Katie Gillis until the morning of the breakfast???? Don't get embarrassed, Katie, I just wanted people to know of your compassion for a little boy. It touched us deeply.

And Applebee's, don't forget, donated the ENTIRE thing. They did not take a cut from the ticket sales and our turnout was huge. I can't imagine what that breakfast cost them, but they earned my PR skills FOREVER.

Got to go blow my nose now...the kids are going to make fun of me again.