Mike' 2nd surgery update 9/26/08

Today Mike had his 2nd surgery in 7 days. The neurosurgery team decided that placing a permanent shunt would be the best thing to do with all of the excess fluid issues Mike has been having due to the spinal issues. I can't even really begin to fully deal with all of this so I have been calling it spinal issues. I don't think it will really hit me what we are dealing with until we get a firm diagnosis and a type of issue we are dealing with.

They did an MRI first that they had to sedate him for and then they brought him to the OR. He was supposed to go for the MRI at 8 this morning so he was NPO from midnight on. At 7 the neurosurgery PA walked in to tell us that things had been pushed back and he wouldn't be called for an MRI until 10. Needless to say, Mike was waking up for the day and we had to keep him from eating or drinking anything from 7 to 10:30 when they finally called for him. It killed me to not let him have anything but I couldn't postpone anything because if we didn't do it today it would have had to wait until Monday.

Mike came through surgery wonderfully. It is so good to see him without that drain coming out of his head. He is really uncomfortable now but he has been such an amazing trooper. I can't even begin to imagine what he must be feeling and how scared he must be. It just absolutely breaks my heart. He came out of anesthesia in the recovery room screaming 'I want my mommy' so loud that they actually called me back to the room to comfort him. Once he saw me he started asking for sticks (pretzel sticks), o's (cheerios) and Monster Hits (the dvd that he loves that has been on pretty much all day every day for the past week. It made me feel better that he was looking to eat. So when we got back up to the room we started him on a little water and then he had sticks and o's. That's when he started asking for ketchup. So I ordered him a scrambled egg and gave him an egg w/ ketchup for dinner! He was having a really hard time sitting up though, apparently a lot of kids that get shunts have really bad low pressure headaches and are pretty dizzy and feel miserable when they sit up for the first few days. He isn't on any Rx pain meds but on Tylenol and Motrin and he will get Dilaudid in the morning before his CT scan to make sure all is working ok.

So, that's the news for the day. We still have no diagnosis and I am reasearching the sh*t out of Drs, facilities and treatment options for a whole array of things that this spinal issue could be. I HATE the waiting game. I HATE seeing him like this. I HATE this situation. It is like something out of a 'It happened to me' short story that you read in a magazine like Good Housekeeping or Family Circle. I have been praying and believing non-stop that the tests will come back that this issue is benign and I ask that you all do the same. That it is benign and treatable.

Thanks for the thoughts and prayers...

Love,
C

Mike update 9.25.08

We are getting another MRI done tomorrow and are going in for another surgery to take out the temporary drain and replace it with a permanent shunt.

We have gotten preliminary pathology results back and they are now ruling out an infection. The path results are showing that this is a tumor/growth of some kind and we will have to wait until next week to get the final pathology results.

I can't even type anymore because I am so upset. Please keep us in your thoughts and prayers...

Mike update 9.23.08

We were moved out of the PICU this morning. They have decided that they have a good handle on the brain fluid drainage and will continue to do what they have been doing in terms of draining and monitoring manually. We have no news as to a diagnosis though. I don't think anyone can even guess-timate when we may get something on that front.
Mike has been an amazing kid during all of this. He really has no love for any of the medical professionals that have come in to check on him though! As soon as someone in scrubs or a white jacket comes in the room he yells, 'no no no', 'all done', 'not now' but the nurses have taken it all in stride. The nursing staff has been amazing here, they have been so great with Mike and so tolerant of me and all of my questions. He hasn't tried pulling at the drain in his head since the night of surgery and he only scratched at the stitches once and that was the first night too.
I really just can't wait for a diagnosis. There is something so very wrong with sitting in a hospital room waiting to find out if your 2 year old has some kind of rare infection, some kind of rare growth, a spinal tumor or cancer... Please keep us in your prayers...