Trey has been having some good days. At times he still seems like he is hurting or not feeling good but at other times he is in a great mood. Labs on Thursday didn’t go over good. Usually he gives in easy but this time he fought, kicked, shook his head no and screamed. I am sure this is coming from the troubles with the IVs. I don’t blame him. He still has large bruises where they tried to get them in. He is still clingy but he has gotten better. Lab results from Thursday looked good. His hemoglobin is at a whopping 12. I think this is the hightest ever. We have been giving him iron 2 xs a day. All other numbers are coming closer into range. Still taking his antibiotics and hoping all this goes away! Thank goodness there was a medicine that he could take orally vs having to take it through IV.

Trey has been really clingy and not yet 100% but he looks so much better compared to last week.

Upon dismissal I asked what the plan was. The docs said to continue the medicine and hope all goes away and he feels better. We were told with his immune system it can be difficult to get rid of but with time he will start to feel better. He is getting a break from needles and no labs till next Thursday. Once things settle down he will go to monthly labs.

Unless there is a complication Trey won’t have to go back for a clinic visit till July 2008, his 2 year anniversary.

We had some fantastic nurses including Alexi, Erin, April and nursing student/tech Jessica on 6th floor and Jakka on the 5th floor in PICU.

Once again we want to thank all of our families, friends, neighbors, employers and everyone for your help, prayers and continued support for Trey and our family.

It feels great to be back home.

The biopsy resluts came back and looked great. Even better news the PTLD (cancer) came back negative. Mom has tears of happiness. God does answer prayers. There is talk of maybe releasing us today or tomorrow. As the PA said we have to wait for the big dogs to make that call.

His hemoglobin jumped to 10.2. We are hoping to see more energy today. We will update as we know more.

Thank you to everyone for your continued support, offers of help, watching the girls, house, dog, and all of your prayers!

Mom misses her girls, is exhausted and is ready to be home! I think Trey feels the same way.

I already wrote an update once but somehow lost it.

In the morning we learned Trey’s hemoglobin was again down, this time 7.8 and all of his other blood numbers also continue to go lower. The infections Trey has can be resistant to antibiotics so they are taking his blood and comparing it to several antiobiotics. They found one that can be taken orally. That is great news! They were hoping he could try it at the hospital but they don’t have it as an impatient med. If he were to eat good, drink great and just eveything looked great he might get to go home tomorrow and try the oral meds. If he goes home he has to be on the med 11 more days, if he stays here it will be 11 more days and not the 6 we were originally told. Based upon his eating and drinking I am not going to hold my breath on that he will be going home tomorrow.

They started his blood transfusion around 5:30 and that ended about 7:45. A little faster this time. All seemed to go great.

In the afternoon we got to talk to the doc a little more about all of his blood numbers. She really thinks everything is around the infection and that it can take weeks for numbers to get better. We asked about him having all the same symptoms as PTLD, Leukemia and Hodgkins and she said yes there is concern and that is why they removed the lymph node and it is being tested. But once again she would have to guess it is just the infection. I hope she is right! We were hoping for early liver biopsy results but none came, hopefully Thursday morning we will have answers. They are looking for anything not right with the liver that could be causing his spleen to be large.

Like Jeff said the surgery got started early……I got a little surprise when the nurse came in at 7:30 this morning and said pre-op would be here in 10 minutes. It was more like 3 minutes. A quick call to Jeff who was still at home in Lincoln. He made it just in time as they were a little slow in pre-op and we handed Trey over at 9:00. Surgery was originally scheduled at 11. After starting to worry we finally questioned why we hadn’t heard that they had started or no updates. We were informed they didn’t get started till 9:50. At 11:10 we received word that he just arrived in post-op. Finally after 30 minutes of waiting we asked where is the doctor and where is Trey. We were told he was still sleeping and a couple minutes later Dr. Sudan called. She apologized and said she had gotten a couple pages and things. Finally at 12:00 they woke Trey up and we could go back. All was going great. They said when they put the breathing tube in he still has a lot of junk in his lungs and things. We were back up to his room at 12:45 and he was hungry. Abby (Tracey’s sister) dropped off a bag full snacks and sodas. Good thing because Trey was hungry. He ate 2 Reeses peanut butter cups. It was nice to see him hungry. The nurse came in and said oops I didn’t see the orders and hes not supposed to have food or drink for 2 hours. Too late! He then ate a good amount for lunch.

We finally got to see labs from morning and hemoglobin was back down to 8.5. More talk of possibly another blood transfusion. Blood drawn at 2:00 showed it jumping up to 9.5 and blood drawn at 4:00 showed 8.5. They wanted to make sure he didn’t lose too much blood during surgery. We will wait and see what labs tomorrow morning show.

Later in the afternoon the doc came by and said they are hoping that all of his problems are related to this positive in his blood….streptococcus pneumoniae. Streptococcus pneumoniae can cause meningitis, pneumonia and blood infections. He was positive for pneumonia last week. The bad news is he needs to be on the antibiotic for 7 days and there is no oral medicine. Although they are double checking this. That would mean 5-6 more days in the hospital so he can get the medicine through his IV. Of course we will be waiting for the PTLD and biopsy results to make sure.

Tonight was not a good night. Trey got so excited when his food got here he went running over to it and his IV came out. The nurse said we would’ve been lucky if it had made it through the night anyway, it was giving out. Nobody wants to do IVs on Trey. Life Flight came down and they consider themselves experienced. The first guy gave it a try and no luck. The lady gave it 2 trys in the wrist, thumb area and 1 try in the head. No luck! Trey wasn’t very happy. Finally at 12:30 am the head nurse gave it a try in his forearm and it worked.

Finally he gets to rest before lab shows up in 5 hours between 6-7 am.

We just got done speaking with Dr. Sudan and she let us know that everything went perfectly and that Trey is sleeping soundly in recovery.

The lymph node they removed was defintely enlarged but looked nomal otherwise although it will take 3-4 days for them to test it for PTLD (cancer) same thing with the liver biopsy. Originally they told us he would be released to intensive care but since he did so well in surgery the plan is to send him back to his regular room on 6th floor pediatrics.

Not much else to report at this time…more later I’m sure.

As we sit in the surgery waiting room at I figured I would take a second to give an update.

Originally the surgery was scheduled for 11:00 but about 7:30 Jackie got a call that they had some cancellations and they were going to take him early. Coming from Lincoln I wasn’t sure I would make it in time but thankfully the wheels of the hospital grind slowly and I got to see Trey for a few minutes before he actually went into surgery. They got started around 9:50 with the plan that it would take about 30-60 minutes to complete. About 20 minutes ago they let us know that Dr. Sudan was done with her part (removing the lymph node) and Dr. Antonsen was heading in to do the liver biopsy. They said Trey is doing great and everything is progressing well.

Stay tuned for more details as I get them…

Trey was very crabby this morning. He got a couple more hours of sleep and got happier as the morning and afternoon went on. Labs showed little change since yesterday and the hemoglobin stayed the same at 9. On rounds at 12:30 Dr. Sudan at first mentioned removing his spleen and testing for PTLD. This would involve 12 more days in the hospital. I wasn’t too thrilled at hearing that.

After more discussion from the team and checking him over they felt a very large lymph node in his neck. They decided they are going to remove this instead and test if for PTLD and also do a liver biopsy.

The good news is a couple hours later the doc came back and said the cat scan said the spleen was not that much bigger like the ultrasound showed. Surgery is still on. More later

Monday, August 6

We got word that xrays Saturday night showed nothing out of the ordinary. They performed a cat scan this afternoon of his abdomen area. Still waiting for results. Beings we have done some camping they are testing to hopefully rule out West Nile. Labs this morning showed his hemoblobin dropping again, this time to 9. I will be anxiously awaiting tomorrows results. Liver numbers continue to get closer to normal. They started a couple blood cultures and one has showed a gram positive. We should know more over the next 24 hours. Because of this they have added an antiobiotic to his IV. He did throw up tonight and was running a slight fever for while. Otherwise he has been full of energy, wanting to leave, not eating and throwing food on the floor, trying to pull his IV out and actually smiling and flirting with the nurses.