Surgeries #3 and #4

I know this hospital too well.  Nobody has to show us where things are at anymore - we know our way around.  Sad, but true.  But after 4 brain surgeries, what do you expect?  The nice thing is that we did get a bit of the "royal treatment" today - Holland was able to go straight downstairs from the operating room to the MRI.  Yay!  That means we don't have to wait until tomorrow to do the MRI which means she doesn't have to fast for 8 hours again, and we don't have to worry about her fighting sedation.  But I think because she has a really hard time with sedation (especially after surgery) she now gets the special treatment.  Yesterday they had to give her 4 different drugs to sedate her during the MRI (and yes, she woke up during the MRI again...this time she was screaming, crying, and saying that she had to go potty, and since she wouldn't calm down to finish the scan, they took her to the bathroom and then put her back on the bed and gave her more drugs).  Yesterday she had a cocktail mix of Versed, Precedex, Ketamine, and Fentanyl.

Today she woke up as they were taking her down to the MRI, and this time she was even HEAVILY sedated (meaning they intubated her and gave her quite the mix of drugs) - seriously, she is a fighter!

So we're waiting right now for the results of the last MRI scan.  We're really crossing our fingers that nothing is there.  We were a bit upset and extremely disappointed after yesterday's scan - it showed that what Dr. Brockmeyer removed in Monday's surgery was regular brain matter - the tumor was unchanged!  It was quite frustrating.  It's not the we don't trust Dr. Brockmeyer.  I know he's a good surgeon.  He's been doing this for 20+ years and people come from across the country specifically to see him.  He specializes in the type of tumor Holland has.  But it was extremely disappointing that he took out part of her brain without even taking any of the tumor out.  He was fairly upset with the results yesterday and was telling us that if he was in our situation, he would be disgusted with him.  He told us he would understand if we had lost faith in him and wanted to find a different surgeon.  There's pros and cons to that.  Pro: maybe a different surgeon had some experience that would help more in this case.  Con: a different doctor hasn't seen the inside of Holland's brain 3 times like Dr. Brockmeyer has. Plus, we knew Dr. Brockmeyer has kind of a big ego and his pride had been hit, so we knew he would do everything he could to fix it.  So today we did a pre-op MRI to map out exactly where the tumor was so they could take a scope with computer imaging to go in and take it out.  We requested that a 2nd surgeon be in the operating room to be a 2nd pair of eyes on it, so Dr. Walker at least came in for part of the surgery to do so.  Dr. Brockmeyer also told us that they sent not 1, but 2 samples this time to pathology and he personally went and looked under the microscope at it.  The problem with Monday's surgery (surgery #3) was that they were "duped" by the pathology report - he found a piece in about the place that the tumor should have been, it looked like tumor, they took it out, and the pathology report (the quick frozen scan they do on it - the full pathology takes 2-5 days) confirmed that it was tumor.  Today's surgery (#4) went somewhat quickly, I think because of the computer scope, but also despite Dr. Brockmeyer saying that that last little piece was hard to get to (which was the first time he said that - I guess from the previous scans it looked like it should be easy to just go right in and take it out - turns out it was not the case and he said today that it was down a bit deeper, behind a corner, which made it difficult).  

So that's basically what we've been dealing with.  Right now we're praying that it's all gone and that she can make a full recovery.  And thank goodness for health insurance.  I'm sure the total bill will now be over $150,000.  And thank goodness that we (hopefully) only have to do 4 surgeries - being at Primary Children's makes you realize that someone always has it worse.  We met a couple whose 3 year old son has a brain tumor on the hypothalamus and a few on his spine.  They did a 9 hour surgery yesterday and they think they got about 80% of it out.  He's been on chemo for a year and he will continue to be for awhile.  They eventually want to do radiation, but want to wait until he's a bit older.  They also have a 2 month old baby girl at home - it's interesting how similar our situations are, but I'd say theirs is worse.  We're grateful that we've only been dealing with it for the summer and not 1 year or more!  Anyway, those are my ramblings for now.  Hopefully next time I post, it will be with some good news (also I'll probably have the MRI images to post so everyone can see how ridiculous and scary the original tumor was)!