Albino ears...

Mr. Isaiah has a bleed somewhere in his belly. He is on the way to Omaha with Aaron now.

He started bleeding into his Gastric drain bag and we don't know why. But, we know Isaiah likes to bleed internally. He is pretty fragile in there. Apparently he has bled enough to make his ears white. It's weird. I've never seen that before. I was checking his gums, lips and nail beds. Then I happened to notice that his ears were very pale. He looks like an albino. Sooo, off to the hospital again.

He is going to Omaha this time instead of Kansas City because he will most likely need to be scoped so they can see what is going on. That has to be done in Omaha. He will definitely need blood. I'm very curious to find out what his hemoglobin and hematocrit are looking like.

Will update when we have a plan. Could be that they have to cauterize something bleeding inside and he gets to come home tomorrow after getting a blood transfusion. Could be a very easy fix. ;)

Back again and ready for school...

We got the boy back out of the hospital on Friday afternoon. Originally, we all thought that he had the same bacteria in his central line again. Not so. I found out that he actually had MRSA sepsis (potentially fatal). Now, he is colonized with VRE (Vancomycin Resistant Enterococcus) and MRSA (Methycillin Resistant Staph Aureus). That really bothers me, even though his antibiotics are working and he is feeling better. It's just knowing that my child is colonized with two superbugs.

So, now he's missed the first week of school. He is excited to make it to school on Monday and meet his teacher and classmates. He makes friends easily so it shouldn't be a big deal.

We finally got moved!!! That's step two of the "getting a house that meets Isaiah's needs" plan. Step one was completed when we sold our house. If you need our address, shoot me an email please. We are now living in another town, but thankfully the kids are allowed to continue in our school district. We plan to move back to our town as soon as we save more money and find the right floor plan for Isaiah. Finding the right floor plan is going to take some time...

I have to say, working lots of hours, moving and having a child in the hospital all in the same week does not spell FUN. Glad this week is over...more glad that my boy is home. Thankful that I can do his IV antibiotics for him. Appreciative of our friends and family that want to help us.

Still waiting for THE CALL...

Well that didn't last long...

The boy is back in Children's Mercy. He was admitted last night with a high fever, chills, headache, abdominal pain. He actually looked grey. What this probably means is that there are some bugs still hanging around on his central line from before. If that's the case, we can pull the line, go to surgery for a new one and be feeling better soon. He could potentially even make the first day of school, Monday. (Perhaps I'm being naive about that...)

This would be the second year he missed his all-important first day. Last year he was having ear tubes put in...

Poor little fella!! I'm glad God's got this-worrying just wears you down after awhile.

The boy is home...

Finally got the negative culture we were waiting for and he's home...sigh of relief. Percy was so glad to see him he piddled on the floor.

Better, but not all the way...

Isaiah's feeling better. Good enough to use rude behavior and get in trouble...but not good enough to come home yet. He is still culturing positive in one lumen of his central line, so he's not going anywhere yet.

Poor Percy the Puppy. He doesn't understand why Boo is gone and now Ike is gone. He is very lonely between Aaron and I both working and splitting time at the hospital with Ike. Ike is missing his dog and wants to come home. Boo called today and said she is missing her dog. More than she is missing Aaron and me, I'm sure. Tater is still gone for the summer and won't be back until August.

Can you believe this???? Isaiah had a Wii in his room at the hospital, from child life. It malfunctioned so child life took it back to the play room for repairs. She left the room, came back and someone had stolen it out of its rolling cabinet in the play room. I am absolutely floored. I can't believe that someone would steal from a children's hospital. There are no limits on stupidity and immorality, I guess. So sad...

Sepsis times 2

So, Aaron and Isaiah didn't make it to Omaha. Isaiah was too sick to make the drive, so they stopped at Children's ER instead. Got admitted and up to the hosptial room by about 4am. What a night.

Isaiah has sepsis-bacterial infection in the blood. Both lumens of his central line were infected. I'm taking it really hard because I provide the care of his central line so I automatically think it's my fault. The coordinator in Omaha said I shouldn't take it so personal. He was having a lot of issues and a lot of people were accessing his central line lately-hard to know where he picked up his bacteria.

By the next morning, his temp. was over 105 degrees and they were putting ice packs on his body to try to cool him down. Tylenol, Ibuprofen and IV Vancomycin weren't doing the trick. They changed his IV antibiotics and then he started getting better.

I don't think he will have to get blood this time, so that's good. The problem is that they still aren't sure exactly what bacteria are growing in his blood stream. You know Isaiah, can't do anything by the book. He's got some weird stuff growing that shouldn't be there and is very difficult to identify. Originally I think we all assumed it was VRE (Vancomycin resistant enterococcus) sepsis, but not anymore, I guess. Aaron said they were in contact with the CDC (Centers for Disease Control)...

He's still at Children's and getting good care. He had a reaction to his IV antibiotics today-he threw up, his head started itching, his ears turned bright red...benadryl cleared it right up and then he got some desperately needed sleep. He is very bummed out that he isn't home with his puppy. All in all, I guess things are OK.

Still looking for a place to rent and running short on time. Scary, that. God will show us the way just like always, but I'm in a bit of a hurry here. It would be real cool if my timing and God's timing were the same for once. I'm not known for my patience...

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.