Friday, September 26, 2008

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...



Andersen Family said...

Thanks for the update. My heart breaks for your family. We are praying for benign results. Thinking about you guys all day everyday.


GinaFinnigan said...

Thanks for keeping us updated Chris, I know it must be hard just to type your thoughts right now. your little boy will get through this. Please know my family is praying for him every day. hugs my friend.

GinaFinnigan said...

Thanks for keeping us updated Chris, I know it must be hard just to type your thoughts right now. your little boy will get through this. Please know my family is praying for him every day. hugs my friend.

Christine said...

Sending all my love and prayers. Please know we are all rooting for you all. What a brave boy!
Christine Kelleher

Ajsmom316 said...

Thanks for the update Chrissie. I think about you guys everyday. Mike and I are praying that everything turns out benign and treatable too!!! ((((((((Hugs ))))))) for you and Mikey!!


Joelle Geiger said...

It sounds like you and your little boy are STRONG individuals. I think about MIke often and continually pray that he feels better soon.

Please know that you have a large group of women that are praying for Mike and the family at this difficult time.

Big hugs, Joelle

Bridget said...

Chrissie-I will keep you and your family in my prayers. Hugs and Kisses, Bridget

Kathryn said...

Thanks for the update. Continued prayers here by me and my family and friends.

The Grossman Family said...


Thank you so much for keeping us up to date. You, Mike, Katie and Matt are always in our thoughts and prayers. You are so eloquent in your writing but I know that words are not enough to express all that you are going through, in turn, they are not enough to express how much we all love you guys and hope and pray for a speedy recovery for your precious boy.

Angela Ferraiuolo said...

My thoughts are with you and your whole family. I hope you get some solid answers soon! I wish you the best of luck with everything and your journey to NY, being from NJ, I know that the best childrens hospitals are up there.

Stay strong mama!!