Day 100 September 13, 2009

Sunday-Quiet and long day for us. Cody got blood taken from his left arm because his right had the IV. About an hour later, he said it hurt and we looked and there was this huge knot there, a hematoma we later find out. He is ok but huge lump there. So have to let that heal, no more blood pressures there. He is a trooper though.

We watched a little football and just took it easy today. Heard that we are going home tomorrow so VERY happy about that.

day 99 September 12, 2009

Saturday- well, today was great. We just heard that the MRI is negative. No virus detected. They will still monitor his blood and check the levels but it is not in his brain. THANK GOD! The bone marrow aspirate and spinal did not show evidence either. All good news. We have to be here until Monday night or Tuesday. He is getting another temporary line in on Monday and once the infection clears he will get the more permanent line. He is not too happy about being here but we will get through this part, no problem.

day 98 September 11, 2009

Friday- I was woken up at 5 am for a call from Casey. Feeling groggy and not realizing that I was waking up to the 9/11 memorial. It was good to hear from him. My thoughts are with all of you that lost someone on 9/11. I watched a lot of the memorial and it was emotional. It has new meaning now that I have a son overseas.
Today was lots of antibiotics again and the night ended with the MRI at like 9pm. Cody was nervous and took some valium before. I am able to stay with him and I keep one hand on his foot so he knows I am there. I do not know how he does it but I guess you just do. This is his 5th or 6th one. Hope it all comes out clear.

day 97 September 10, 2009

Thursday- It was a long day here at Sloan. We waited all day for the MRI which did not happen. Lots of antibiotics were started and taken away.The infection in the line was confirmed. We are here till at least Monday, that is my guess. Cody slept a lot today, bored and the infection is kicking his butt.

day 96 September 9, 2009

Wednesday- well, we woke up today and planned on doing a 'field trip' with friends Mary and Corinne and Nicole was coming. We are all set to leave to go to the aquarium and I checked Cody's temp and he had a fever. So plans changed and we started our journey to Sloan. Blood cultures were drawn and Cody was starting to get sicker so we were admitted after a very long day. There are no bed available on pediatrics so we are on the 5th floor. This morning one of his lines tested positive for an infection. We had already started antibiotics yesterday but today the line was removed and an IV started in his hand. He has had a fever today too. I was hoping he would hold on as his new line gets put in on Monday. It is scheduled for Monday anyway. Today we are waiting for the MRI, you get bumped when you are inpatient. He feels ok and is just tired. There is some good. He was able to take a REAL shower after over a month and was loving it! It wiped him out and he is napping again as I write this. It sucks to be back but thank goodness it is nothing more than a line infection. Thank goodness for our good friends, the Silvino's, the Morello's and Moira for taking our doggies. They get a mini vacation too. I am thinking we are here till Monday due to the IV and then after we get the new one, we will be discharged if all goes well. So here we are again....

day 95 September 8, 2009

Tuesday-Today we were off pretty early. We ended up waiting till 2:30 for the spinal and biopsy. Dr. Kernan did not do the biopsy because she had to leave for her daughter so Dr. Boulad did it. She saw my disappointment.

We talked today about how to deal with this diarrhea. We are doing the meds around the clock, lucky me and hopefully this will kick it or we will need to do further testing. We did not get home until around 6 and Dr. Kernan called to say that the spinal fluid was negative. There were not white blood cells in the fluid which is a good thing and we are waiting to hear back about the HHV6 virus but she thinks that is good too. We would like to stop the antiviral med so once the MRI is negative after Thursday, then maybe we can do that.

Cody was pooped and went straight to bed at around 6:30. I will have to wake him lots so it is fine and he was a little groggy too. He did good today and glad that is over.

I hope the first day back to school was good for everyone. I really did miss it!

Day 94 September 7, 2009

Monday-Cody slept really well with only a few trips to the bathroom. We both woke up when the IV beeped sometime after 9. We are usually up and waiting for it to beep. He did eat a small piece of bacon today so I am happy. We are relaxing today. Tomorrow we head to Sloan for the biospy and a regular visit.