And we're done...

Isaiah is out of surgery now. Aaron texted and said that his temp. is up to 38.8 (about 102.0 F) and that he is so dehyrdrated that he is crying and he cannot make tears. He said that Isaiah is in a lot of pain right now. He is on the way to PICU.

Here is what happened-I just got off the phone with the surgeon, Dr. Grant. God love her...
The piece of graft that was going to be removed couldn't be. It was too scarred and too fibrous. It would have been too risky to try to remove it at this point. Also, he had some sort of small hole or leak where the intestine was connected to the colon. There was a bunch of pus inside his belly, so there was infectious material that the drain didn't get out of his abdomen. Again, too risky to try to get it all out, so there is another drain for that (jp drain).

So now he has a drain from the duodenum, a drain from the stomach and a drain from the abdomen. He will come home with two of these. He also got a new temporary triple lumen to go along with the single lumen, so he has two central lines. Before he goes home he will get a new double lumen to replace the two lines. She did say that his liver is still soft. It's enlarged from the TPN, but at least its not all hard and fibrosed. Still planning to list in a couple of months.

Now, the task is for him to survive recovery and get him home to his mama. We've got a long road ahead of us and the journey is just beginning. Praise God, my boy is alive!!!!

This FAMILY NEEDS OUR HELP!

This is not Jen-Isaiah's mom. This is her friend JEN-I helped her start this blog.

Isaiah is having surgery TODAY at noon-please join me in praying for my dear friend and her family.

Jenni is not able to be with Isaiah during his surgery. Isaiah is in Omaha and Jen is busy working in Kansas City. I can't imagine being away from my baby during this time but Jenni has to work to keep the family going. Her husband is with Isaiah today.

I'm busting in on her blog to ask for your help. It is VERY DIFFICULT for this family to live in one place and have Isaiah in a totally different state. With gas money, travel expenses, lodging and food it is VERY EXPENSIVE!

So, I'm asking you, out of the goodness of your heart-If you feel led to help this family-there are 2 ways.

#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
136 East Main Street
Gardner, KS 66030

Phone: 913-856-8088

Even $1 will help this family!

Home again, home again...

Well, I at least got a dose of my boy this weekend. Boo and I went up to visit-can't let "the boys" have too much fun! Boo and Isaiah played some cards after a VERY competitive game of chess. They are both beginners so it was funny to listen-I don't know how to play so Aaron had to referee. I guess you can't move any old piece sideways in chess??

Friday Isaiah had more diagnostics to follow up from having the scope on Thursday. He is blocked three different ways. They used contrast and it showed that the drainage tube exiting the duodenum was obstructed, the intestine from the stomach was obstructed and nothing came through from the bottom either. Obstructed three different ways in such a small area. Who'd have thought???

OK, now the hard part. Isaiah is going to have surgery tomorrow, just found out that he is scheduled for noon. He is going to have the single(!!) lumen central line removed and a double lumen placed instead, but of course, that is just the opening act.

His abdomen is going to be opened again. This time, that little piece of transplant that was left is going to be removed. He had another small piece of his own intestine attached to the transplant from the liver. That is now going to be in a loop, attached to the stomach with a drain stuck in somewhere. Nothing attached to the end, if you know what I mean. Hard to picture, I know. I have a lovely drawing from the surgical team that I will scan tomorrow and put in the blog. It helped me a lot because I couldn't imagine what else they could do. There isn't a whole lot to work with.

He'll be back in Pediatric ICU after surgery until he is stabilized and then we start over with the post-op recovery. Maybe this time it will be blessedly uneventful. I supposed it doesn't matter too much, since I do know that he will be OK in the end no matter what, but I would like to spare him the pain and discomfort.

Also, he will not be able to eat food after this surgery until after the transplant. Since he has no way to evacuate food eaten, it would clog the drain tube that he will have. That is a huge deal to us since we worked so hard to teach him how to eat when he was two years old. Isaiah is not going to be happy to say the least.

Will update tomorrow when I know something.

It just keeps getting worse...

More surgery. The Team wants to do exploratory surgery to have a look inside again. It was exlained to Aaron today that most likely, they will have to remove everything left, staple the rectum closed and put a drain tube in the stomach, as there will be nowhere else for the stomach acid to go. It is still not clear to me if the liver and pancreas will have a place to drain into or not. I'm concerned that this will cause Isaiah to turn yellow again and have increased liver enzymes. This really could push him into liver failure more quickly.

I guess we will see. It's not an emergency surgery, since he has the NG tube and drainage bag from his nose. I'm guessing that they will operate next week rather than tomorrow. I could be wrong...

I don't necessarily have my Joy back, but I am reminding myself that God is handling this and I need to wait and see what He does next. If I had no worries when Isaiah had the explant, then I don't know why I am so upset now. Maybe it's just knowing that he has no idea what is about to happen to him-again. This could keep him in Omaha for several more weeks.

I just want my little boy home. I miss him so much. :(

Bad news from UNMC...

Just got off the phone with Aaron. During the scope of the upper GI tract, the probe (camera thingy) could only get about 4cm past the stomach and no further. The piece of remaining small intestine has twisted and stuck to itself, apparently, after the pressure change from "the great draining".

A CT scan will be done tomorrow to determine if any fluid can go past or around the drainage tube in the small intestine. Here are our options as they stand right now: Isaiah goes outpatient with a big honkin' NG tube attached to suction that he would have to carry around along with the TPN backpack and the drainage bag attached to his stomach OR, they open him back up, remove all remaining small intestine (tiny piece that it is), staple off the rectum and I don't know what else with his stomach, liver etc.

Things are not lookin' good, my friends...I just keep telling myself, "As long as he still has this or that, he'll still be OK", but he keeps losing parts and he is not going to have anything left. I'm not taking this in my usual optimistic style...hopefully by tomorrow I'll have regained my Joy. I know God has this and I'm not taking it back from Him, but I do get sad sometimes. I think I need to read my bible for awhile and maybe have a bubble bath or something. I feel like a piece of wood.

A SINGLE????!!!!

So, Isaiah came back from surgery last night with a single lumen central line. I would love to know how I am going to run TPN along with anything else.

He is getting scoped as we speak. They are going to look at the upper and lower GI tract to see what the problem is. I'm actually feeling a little anxious. What if something in there is so jacked up that he needs more surgery??? I'll never get him home...

The Team is talking about going outpatient Friday, but I'm having trouble believing it. He would still be in Omaha, but not in the hospital. It's better than nothing, I have to say. I'm trying to mentally prepare for the sheer volume of medical supplies that are about to come our way. No place to put it all, for sure.

Going down to surgery...

for a central line placement. Isaiah had a triple lumen central line but it clotted off completely, even after the nurse fixed it with clotbuster. A central line is an IV that is inserted into one of the large veins, usually the subclavian vein that runs parallel to the collar bone. In Isaiah's case, it is usually inserted into the skin on the chest and tunnelled up to the collar bone area. Then the IV tubing (catheter) is inserted into the vein itself and it runs down to the heart. The tip of the catheter typically sits just above the Right Atrium of the heart. That's why it's so serious when someone gets an infection. It can travel straight to the heart and throughout the body.

So, Aaron and Isaiah are headed down to the OR for a new central line. I hope it's a triple lumen or a double at least...

He is still vomiting. Aaron said that no one knows why he is vomiting. The Team has ordered some more diagnostics for tomorrow so hopefully we can get to the bottom of this. They can't let him go outpatient if he's got a big NG tube in his nose with a bag hanging off. The kid has three drain bags attached to his body. Unbelievable. He's still smiling. No pic for today yet. I have to wait until they get back from surgery.

I am between patients and getting ready to leave my house again so I will have to update later. Stay tuned...and keep prayin'. We've got to get this kid out of the hospital so he can come home to ME!!!!