Tomorrow will be 2 weeks since we received that phone call telling us to be in Omaha. It seems like yesterday but yet it also feels like months ago.

Finally, Trey is feeling better. He has gone 2 days without any pain meds and is feeling much better. He had labs on Monday and all of his numbers are getting closer into range. He also had his RSV shots on Monday and because of his weight loss he only had to have the two big shots in the leg. We return to Omaha tomorrow for a follow up visit. He has been sounding really “junky” and I am hoping that is just a cold.

Over the weekend we got to surprise cousin Chase at a birthday party celebrating him turning 13.

On Monday Trey, mommy and daddy got to go visit Emma and Anna in school and eat lunch with them. They are celebrating Catholic schools week.

We have been saying prayers for our cousin Nena and her two young children who lost her husband in a car wreck over the weekend. Our thoughts and prayers will continue that God will help guide them through this sorrowful time.

Finally, we received word that once again Trey has tested negative for PTLD. Thank you God!

He also is negative for EBV and the other tests.

He is still in a lot of pain. We tried Tylenol in place of the hydrocodone and that didn’t help at all.

Jeff said that Trey drank almost a whole can of pop and ate 1/2 a Weight Watchers noodle meal tonight. No, hes not on a diet! In fact, I’ve been worried about the weight he has dropped, 4 lbs in less than a week. I am sure once he feels better the weight will jump back up.

I am praying lots that he is feeling better tomorrow. The days are long when he just wants you to hold him.

Still no news on the tests.

Prayers are needed for Jeff’s grandma (Mildred) who is in the hospital tonight. She was having chest pains.

Happy birthday today to grandma Sue!

Please remember to register to be an organ donor!

Trey hasn’t felt good for most of the day. This evening he had about an hour of energy where we got him to take a couple drinks and eat a few bites of food. I have been syringing water in him to keep him hydrated. I don’t want to end up back at the hospital.

His labs show him as not being dehydrated. His total bili jumped and Dr. Sudan from the team in Omaha thinks that is from the anesthesia.

No results today on the PTLD or other tests. We were told 2 days for results but today they are telling us it takes 5-7 days. More waiting. I am hoping Trey has a much better today tomorrow.

Trey returned home around 5:00 on Saturday. He was somewhat happy to see the girls.

He didn’t have a good Sunday and he isn’t drinking much and is running a low fever. He has no energy.

We just took him for labs and we’re hoping he isn’t dehydrated. We are also waiting to hear from Omaha on the test results.

We got back to Trey’s room yesterday around 5:00. They did put him on blow by oxygen. He did drink and eat a little but as the night went on the more crabby he got. He obviously was in pain. He slept with lots of turning, crying and coughing.

Labs this morning showed his liver numbers elevated even more than yesterday but his blood numbers hung in there and didn’t drop much lower than yesterday. He also was tested for some viruses which we will know results on those and the PTLD on Monday. He hasn’t had much to drink today but we will work on that.

We finally just finished with rounds and we are happy to say that Trey has been released and after all the paper work we should be on our way in a couple hours.

I practically just gone with the last update and I looked up and saw the doctor standing there. My first thought was why is he here so early? Surgery was over and everything went great. His words were…his tonsils were huge and we took them out, if he were a betting man he would bet against the PTLD but we need to wait for the test results, his adenoids did not grow back, showing a good sign that there was no PTLD, and that only one ear was filled with fluid. We’ve been waiting 30 minutes now for him to wake up so we can go see him. We are to expect him to be really sore for 4 days. If blood and liver numbers look good and if the transplant team agrees we could all be going home tomorrow afternoon. Once again, thank you God for answered prayers.

The operating room is a busy place today. They took Trey from us at 1:30 and at 1:40 we received a call that they were starting. They told us to expect 2 hours before we hear from them.

We thank everyone for their prayers, support and offers of help.

It’s uncanny how it seems like January and July are his months. (Surgeries in January 06, July 06, January 07, July 07, January 08)

They have let us know that his surgery is scheduled for noon and will take him down around 11:00 or so. As always, we’ll try to update this space as quickly as possible to let everyone know what’s up.

We dont really know any more than we did last night…which was interesting. Of course Trey cant have anything to eat or drink for 8 hours ahead so they cut everything off at 2am. As such, we kept him awake as long as we could so that he might sleep late this morning. It worked and he just woke up for meds around 9:45 and we’re doing everything we can to keep his mind off his milk.

It’s getting pretty close so I’ll sign off for now but we’ll post as we know anything.

It is January 2007 all over again.

When we woke up Thursday morning all was going great till 11:00 when I saw UNMC on caller ID. I was prepared, I knew his liver numbers were in the 160’s, not great but they’ve been worse. I answered the coordinators question of “what is up with Trey’s health” with…he’s had a small cold, some loose stools and last week his tonsils were so enlarged that they were touching. That set off an alarm! Withing seconds I was told he needed to be seen in clinic today. I told her his tonsils looked great this week and that they were starting to go down. That didn’t matter. She didn’t want to scare us but their big concern is PTLD (cancer). That word just doesn’t go away! The transplant coordinator, Deb, called back within a few minutes and said I have an appointment scheduled with the ENT at 1:00, pack bags because we will probably admit him until we figure out what is going on. I was still trying to reach Jeff. They like to keep life exciting for us. Jeff and Trey were headed for Omaha at 12:30.

After visiting the ENT and the “team” it was decided that Trey would have surgery tomorrow, January 18. They are going to remove his tonsils, put tubes in his ears and look again at his adenoids and see if they’ve grown back and, if so, remove them. They want to get his tonsils out quickly so they can test them for PTLD. Once the tonsils are out and the tubes in this should help his hearing, speech, and make breathing easier for him.