Sorry for the delay in updating. We got home, had lots to catch up on and on Satutday we were in Grand Island celebrating Jeff’s granpas 90th birthday and Trey’s godmothers (Kelli, Jeff’s sister) 30th birthday. Today I went back to work all day.

Trey is feeling better! Before letting us go I said I think his rash is getting worse again. They switched him to another oral antibiotic. So far the rash seems to be going away.

Dr. Botha thinks it was probably cholangitis. It is more common in patients after having a Kasai procedure. For now they aren’t going to be doing more testing. If he has signs again they will go into the liver and inject a dye and watch the process. There was also mention of a thinning bowel or a couple other things. He will be on the antibiotic for 9 days. Labs will be repeated this week and if good the next ones will be in a couple weeks. By doing finger pokes instead of full drawn blood draws his platelets have climbed back up to 89.

He was happy to be home and to see his sisters. He loves to play with Emma and tease Anna. Trey actually ia growing taller and when leaving the hospital he was saying hi and bye.

We again thank everyone for your prayers!

Still here…..a long day it has been.

I got to see the girls last night and got a short break.

Trey was running a fever again Tuesday morning and afternoon. One look at him and you could tell he felt awful. The doctors are really confused. They have ran a ton of tests and cultures and everything is showing up negative. He is still having lots of loose stools. The doc said maybe we will watch him for a couple days and maybe go in and look at his liver. There was talk of maybe cholangitis. But his liver numbers are almost perfect. We are happy about that.

Today started great. No fever all day!!!!! On rounds Dr. Botha said if this continues they will leave him on the antiobiotic one more day and one day on an oral one and observe him. He said I hate to let you leave without knowing what it is. He did say he has always been bothered by Trey’s pertruding belly. This afternoon we discovered his whole body is covered in a rash. One of his blood numbers is high which can mean an allergic reaction to something. They have decided to stop his current med and switch to the oral. I asked about going home. Most thought maybe Friday.

It’s Monday night and we are still in Omaha. Trey’s fever is back again!

Still not many answers have been given. Still waiting on cultures. Lots of dirty diapers and tummy hurting him. I thought for sure they were just keeping us again tonight to be safe and we would be on our way home Tuesday afternoon. I am not even going to guess now that his temp is back.

He was given Tylenol a few times today to help with the tummy pain and crankiness. It was a long day in this little room.

We are still asking for prayers that they find answers and Trey is healthy soon!

Last night wasn’t as easy as the day. Trey’s fever came back and he was crabby and not feeling good. Finally a little over 2 hours later he was given Tylenol and soon thereafter he was feeling better. Apperently there was no order for Tylenol even though he was admitted with a fever and the resident was in an emergency. Our nurse couldn’t get the medicines straight. I can’t imagine what he would’ve gotten had I not been here. They withdrew more blood last night from 2 different spots and that didn’t go over good with Trey. They aslo did another urinary test. The blood that was drawn this morning clotted so they had to return and draw more.

On rounds around noon today they talked about not knowing exactly what he has. The good news is that his liver numbers have reamined consistent. They are still waiting for word from Bryan and their cultures. If all goes great Dr. Langnas said we will try to get you home today.

Dr. Langnas was the head on rounds this morning. We learned that the cat scan showed no pockets of infection. His labs are looking good. In fact his liver numbers and bili have come down from Friday. This is telling us the bug probably is not in his liver, which is good news. The biggest concern to me is his platelets are down to 56. I know they probably aren’t concerned tell they reach the 20-30 range. Yesterday they started him on an antibiotic and we are waiting to hear from Bryan and their cultures that have been growing since Friday night. Otherwise Trey appears to be feeling great and getting bored in his little room. According to the doc they would like to find where the bug is located and we are waiting on more testing and cultures to come back. If no gram negative rods show up for 48 hours he can probably be released. We haven’t heard if any have shown up today. We are hoping everyone is back at home tomorrow. Outside Trey’s room on the window is a 3-4 foot painting of Curious George. George is his favorite and Trey often reminds us of George.

Yesterday, Friday, Trey was running a fever as high as 103.5. We were able to control the fever and bring it down to 100.5. After consulting with Omaha they said if the temp goes above 101.5 bring him to the ER for check up and tests. Sure enough around 7:30 his temp was back to 103.5. Off we went to the Lincoln ER for 3 hours. After lots of testing it was determined he had a virus and to follow up with doctor in morning.

The morning doc appointment went great and he suggesting keeping up with Tylenol, fluids and watching him. Nothing abnormal.

This afternoon around 2:30 the doc called saying lab called him and said Trey’s blood cultures were showing postive for gram negative rods. He was saying it is not common and that he needs to be hospitalized and said he was going to call UNMC and tell them we were on our way.

After an appointment with the resident he said Trey needed to be admitted for at least 48 hours and possibly more. He said they take gram negative rods serious and they are a main cause of septic in children. They want to start with more blood work and cultures right away. They also want an IV and fluids going and soon will be doing a cat scan. They want to find out where the “bug” is. It is usually intestinal, it could be in the liver or something as simple as a urinary tract infection. Possibly a MRI and more testing tomorrow. We are waiting for more info.

We are again asking for everyone to remember Trey in your prayers!