Surgery

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November 1)

I know everyone wants to know how Jonathan’s big surgery went.  I’m so sorry it has taken me so long to get the update written, but this week has been absolutely crazy!  I’ve become a full time nurse, and since the boys haven’t seen us much lately, they seem to want lots of mommy’s attention as well. 

As you know from last week’s blog, Jonathan was diagnosed with methotrexate induced meningitis the day before he had surgery.  So they decided to proceed forward with surgery.  So as planned, my parents brought the boys to Seattle so we could be together as a family before Jonathan’s big surgery.  They didn’t take him down to pre Op until 11, so we were able to spend some time together with the boys.

So at 11:00 a.m. on Thursday morning Jonathan and I wheeled off down to pre Op.  They began to place IVs and the anesthesia team came and placed a nerve block in his right leg.  The surgeon came in to inform us Jonathan has become a real pain in the ass with the meningitis and all, But that they were ready when we are.  I hate that feeling before a big surgery… the nerves are awful.  Jonathan was shivering as if he was freezing but wasn’t actually cold.  I was totally sick to my stomach and it seems to take forever before the O.R. is ready and the transport team wheels him away.  I think they took him back shortly after 12:00.

My sister Randalynn, and Jonathan’s mom Dede came to hang out with me during Jonathan’s surgery.  I was told it would take about 4 hours.  So we went down to the cafeteria for a mediocre lunch at best.  Then we made our way up to the surgery waiting area.  At about 5 hours the surgeon came out to update us.  He said everything was going well.  They had to remove 7” of Jonathan’s femur.  They were able to get the entire tumor and that overall the surgery was successful.  All great news!  However he never talked about the big question… How dead was the tumor?  (If you’ve been following along with the blog, you will remember we were hoping for 90%-95% necrosis of the tumor, this shows the chemo is successful and reduces the risk of spreading the cancer cells during surgery)  So I asked about the tumor.  He said that the tumor was actually very “interesting.”  He said part of the tumor looked like a low grade tumor and portions of it looked like a high grade tumor.  He said he is very interested in the pathology report which will take about 2 weeks.  But he was certain that the tumor was not nearly as dead as we were hoping.  Anyway they were closing him back up and then after he was in recovery for a while they would call me back.

So for the next 4 hours that we were waiting to see Jonathan, the waiting room slowly started to thin out.  Everyone was going back to see their loved ones as we waited.  Well everyone but this huge family… The mother came over and sat down with us.  This family was also from Spokane, and their son, who is also a father of 2 and a husband had been in surgery since 5 am.  He had a brain tumor.  There have been countless numbers of people that have told me what perspective our situation has put on their lives.  And as I sat there and talked to this mother, I felt a level of perspective myself.  I know both of these men face the same scary scenario but in a very different avenue.  I felt so grateful that the risk of our surgery was the loss of his leg, not the loss of his ability to breathe or ever be who he really is.  Just getting the tumor out was a much lower risk.  And at about 8 hours of waiting for Jonathan, I had to watch this family as the team of surgeons had to come and tell them that they could not remove the tumor without him being on a ventilator for the rest of his life.  Losing a leg seems like no big deal now... And he didn’t.  He kept his leg and everything went as we hoped for, well everything except this “interesting” tumor.  But we have so much to be grateful for!

Finally at 9 pm I was able to go back to the post Op.  Jonathan was doing much better.  Apparently he had woken in a ton of pain, and the anesthesia team returned to do a full epidural.  So now he was resting much more comfortably.  We got him upstairs to his room and continued to manage his pain.  He had lost enough blood that he was borderline in need of a transfusion, so his pulse rate was crazy high.  They had an alarm set to his pulse rate… If it reached above 130 the alarm would sound.  Lets just say it was a very long evening.  If Jonathan worked up enough energy to just move his head that would raise his heart rate to sound the alarm. 

On Friday afternoon physical therapy forced him to sit on the edge of the bed and attempt to stand.  This was not a good idea!  Because he had the epidural in, he couldn’t feel his bad leg, but he couldn’t feel his good leg either!  He is not to put any weight on his bad leg and because he can’t feel anything, I think he was bearing weight.  And needless to say afterword, he was in a ton of pain, and his pulse rate was racing. 

After recovering from Friday, Saturday was much better.  His pain was managed, his heart rate was improving, and we got a nicer physical therapist.  He was starting to eat a little bit, and we were beginning to see some definite recovery.

Sunday we began to ask to remove the epidural.  Jonathan was getting frustrated with Physical Therapy because he couldn’t do anything.  His good leg was actually more numb than his surgery leg.  So just standing was quite difficult.  So on Sunday afternoon they removed his epidural and within 3 hours he had me helping him stand.

Monday he began to complain about his catheter… But we had a very needy next door neighbor so he didn’t get much help from his nurse.  I watched a couple YouTube videos, and it seemed really straight forward.  I think he would have let me if I could have found the proper syringe to deflate the internal balloon thing… He was that desperate.  He was able to start walking the halls with his old man walker.

Tuesday he was mastering crutches and the stairs!  The doctors, nurses and PT people were really amazed at his progress.  They decided he had accomplished all of their required goals for them to allow him to go home.

Wednesday morning the pain management team shot an extra load of drugs up his nerve block and then removed his last cord.  We were able to hit the road!  And I cannot tell you how happy and anxious we were to be on our way home.  Jonathan scared me a bit as we pulled out of the parking garage and he began to get a bit emotional.  He was beyond ready to see his kids, and be in his own bed… I was grateful it wasn’t because I hurt him getting him in the car!  Once we were on the road, He was a whole new man… Here is a bonus video for those of you who are following the blog.  Most of you that know Jon, know he would never do this without the help of a beer or 2.  But I can assure you, besides an oxy, he was drunk on HAPPY!

Early Thursday morning, like 2 a.m. that nerve block had completely wore off.  He was in a ton of pain!  If I could only tell you the amount of medications he is on with the surgery and chemo stuff.  I think my head is going to explode.  I felt so bad that I missed a med or slept through a dosage possibly… but I got him comfortable enough to sleep, and made a goal to get much more organized!  AND then I was back to normal life… Got Jax ready for school, made breakfast, and I even made it to the gym for a quick while. 

Friday was a big day… I got Jonathan in the shower!  It took me 15 minutes to get him ready for the shower, and 30 minutes to get all the dressings back on after the shower!  WARNING: IF YOU AREN’T INTO GROSS PICTURES, SCROLL DOWN QUICKLY!  For the rest of you, here is what his back looks like after removing the melanomas, and then of course his leg. 

Praise:  1. We got to have the surgery and everything was successful!   2. We are home as a family!  3. We have some amazing friends that have made this week a lot better!  4. Perspective, although this isn’t what we want to be doing right now, it could always be worse.  I continue to thank God for all of our blessings, because those are still abundant. 

Prayer request:  1. Jonathan’s pain.  (He is unable to take the pill form of morphine… he was having weird side effects.  Tweaking would be the best description) So we are trying to manage with less strong stuff.  2. The pathology of that tumor, and our plan for the next few months are determined by the pathology.  3.  This may seem weird, but after spending 10 days eating mostly horrible hospital food, I’ve gained some weight and don’t really feel good.  I want to get back on track, get more energy back, be at the gym and be able to do what I need to do to actually take care of myself for 5 minutes.