Meds, Meds, and more Meds!

Jared got home from the hospital Thursday evening.  That night a nurse came to show us the drill with the new antibiotics.  He has a mid-line, which is still an IV, but this one only goes to his shoulder rather than all the way to his heart.  She was trying to show me what to do (which came back really quick - I just never thought I'd have to do it again!), but we couldn't get the saline to go through the IV.  She acted like she had never had that happen.  Finally Jared pushed it really hard and it went through, but a few minutes later we noticed that his arm was bleeding where the IV was going in.  It was about 10pm and I was not wanting to go back to the hospital!!!  She luckily got everything under control (we think), but it took forever for her to get a complete list of Jared's medications, so she left around 11pm.  I've calculated the pills, and he's now taking 27 oral pills, 2 stomach shots, and 3 IV injections every day.  The IV bag has to be given every 8 hours, and it finishes after 2 hours, so we have to wake up twice at night, once to plug in the antibiotics, and another time to unplug the antibiotics and clean out his IV.  Luckily we only have to do this for a week.

 

This is a new shot of Jared's head:

 

 

 

This is the first time he's had metal staples.  I could've sworn they told me they'd be in for four weeks, but that doesn't make any sense.  By that point the skin would heal up and they wouldn't be able to remove them, so I'm not sure.  His incision line is different.  It used to go straight back, straight across, and straight back again.  Now it's more of an "S" shape.  And I'm really wondering what the random slice is on the top right corner of the picture.  It looks like the doctor just accidentally sliced his head with the scalpel!  I guess it's not a big deal, but I'm trying to figure out why they wouldn't stitch it up?  Hopefully it doesn't pull apart!  Overall, I think everything looks okay. 

 

I received a card in the mail a few days ago announcing the retirement of the neurosurgeon that performed the surgery two months ago, the one that placed the acrylic piece in his head, the one that was blowing him off a couple weeks ago.  I think that's pretty, um... interesting.

 

Jared has pretty much been flat on his back since he got home from the hospital.  He insisted that he was going to work yesterday.  I told him I didn't think it was a good idea, since he hadn't even sat up for 10 days, but he went anyway.  His brother took him at about 7:30am and I told him I would be waiting for the call to pick him up.  He called me around 2:30, but he was completely out of it when he called.  I asked where he was, and he couldn't get more than two words out to explain it, so I told him to email me the address.  He said he had a minor seizure at work, which is what made him so incoherent.  We've got to sit down and figure out a work plan.  I really think he needs to file FMLA and just work as he can.  He is obviously doing more than he can handle right now!

 

We have another MRI next week.  I'm a little nervous for this one.  He hasn't had an MRI in two months.  And the last MRI was pre-Avastin.  This one should give an indication on whether the Avastin is working or not.  He is going to miss another dose on Friday because of this infection.  I try not to think about it much.  So I probably won't have much to say until then...

 

 

Success (We Hope)

Before I begin, I will give fair warning that I am posting graphic pictures this post.  So don't read if you can't handle it!

 

We've spent a long, boring few days in the hospital.  I'm used to being with someone that doesn't feel good at the hospital, not someone that feels fine.  Each day we got to break away for just a few minutes, but we had to haul along the huge IV pole with antibiotics and everyone stared at us, especially when it started beeping.  So we kept our little outings short.  Luckily he has had a pretty view from his room, and we've been able to watch the life-flight helicopters come in and go out while watching a LOT of TV and movies.  We also had a doctor for a couple days that looked like he was about 24, and he was from Seattle.  So I asked him about my show, Grey's Anatomy (because it takes place in Seattle), and was quite disappointed to learn that most of that show is not real at all.  It's completely dramatized!  Imagine that!  But it was still disappointing.  Here I thought I was learning a lot about medicine!  Anyway, I think he considered us fun patients.  At least we're good for something around there!

 

Surgery was today at about noon.  We heard so many different things all weekend that we didn't know what to expect.... that they were removing the plate and replacing it, that they were leaving the plate in and just cleaning the area really good, that surgery would be 30 minutes...  Anyway, surgery lasted about 3 1/2 hours, they "chiseled out" the old plate (doctor's words) and replaced it with a new one.  The new one has titanium, but I'm not sure if it's attached to the acrylic piece or not.  He said he had to pull the skin pretty tight and use heavy-duty staples that need to be left in for about 4 weeks.  They acted like they need to watch everything carefully.  Luckily they said it was not in the brain, so they expect a mild recovery.  The bad news is that they said he has to have a PICC line again, but they think it will only be for 7-10 days.  We can handle that, we're just worried it's going to turn out to be 8 weeks like before!  The doctor said that the new plate has antibiotics and should do the trick.  But they did say he's at a higher risk of infection from surgery.  I think we already figured that one out!  I just can't believe his head is re-opened AGAIN.  He was healing up so good this last time.  In fact, he had some girls at Costa Vida ask him about two weeks ago what type of surgery he had and when, and they were shocked when he said 2 months ago.  Hopefully this one will heal up as well as the last one, but I'm not sure how the doctor was able to pull the skin shut where Jared had a huge gaping hole.  It could be interesting.

 

 

 

When I left him, he was still pretty drugged up.  We were hoping he could come home tomorrow, but I don't think that's going to happen.  Luckily he's not in the NICU (Intensive Care), he went straight to the NACU (Acute Care).  That's a first. 

 

The kids are coming home tomorrow.  It's been weird to come home at night to an empty house.  I don't think I've been completely alone at night since I got married.

 

To share a quick story - Jared's anesthesiologist today was a guy from Scotland.  He checked Jared's wrist band to make sure he had the right guy.  Jared joked that it would be hard to fake it, and I said that someone would have to fake the scar, too, by cutting their head up.  He said, "You'd be REALLY surprised at the stuff we see in here."  In other words, it wasn't too far-fetched.  He said just last week they had a prisoner come in that had completely cut himself up, probably trying to get out of the prison for a couple days.

 

Anyway, it's amazing at how quickly this infection turned ugly.  But again, we're just glad it wasn't in the brain.  Here are the pictures of the one-week progression:  The last one looks disgusting, but at least the pus had completely cleared out.  I'm not sure if that's his skull or the acrylic piece.  It's probably the piece.

 

 

Deja Vu

...in more ways than one.

 

Jace got baptized last Saturday.  That morning it occurred to me that Jace's big day should go more smoothly than Brynlee's had. (We ended up in the ER the afternoon that Brynlee got baptized.)  That thought pretty much immediately got shot down.  Jared had fluid oozing out of his incision and had me look at it.  As I wiped the pus away, I could see a big gaping hole in his incision.  We knew that couldn't be good.  At that point I was pretty sure we would be headed somewhere after the baptism - I was hoping the Instacare could handle it. 

 

My two handsome guys!

 

 

Jace did have a nice day, and it wasn't as dramatic as Brynlee's turned out to be.  We were planning on going to dinner with Jared's family that night anyway, so our date night was just spent at the ER instead.  The doctor at the ER didn't even touch Jared's head at all.  He basically looked at it and said he was going to prescribe some antibiotics that would hopefully clear it up.  He thought that it was an infected stitch and told us that we needed to go see Jared's neurosurgeon if it didn't clear up in a couple days.  If you remember, we've heard the words "infected stitch" before.  They were wrong last time, too!!

 

I was a little nervous about the whole thing because I was heading out of town with the kids Monday for a Family Reunion.  Jared had to stay home to work (he had taken off 7 weeks recovering from surgery and had more than exhausted his time off).  I should probably add here that it seems like everyone else I know that gets cancer lives it up by going on vacation after vacation.  I've never understood that.  Apparently we're the only ones who have to worry about finances and the responsibility of a job?  Anyway, I felt guilty leaving him to work while we all had fun, but I'm trying to keep the kids' lives as normal as possible, and this is a vacation they've been excited for.

 

When I left Monday the infection didn't look any better.  On Tuesday he texted me a picture of his head, and I told him he really needed to go see his neurosurgeon.  I thought about posting the picture he sent me but it's probably too disgusting.  So Wednesday he stayed home from work, called his neurosurgeon ALL day without returned phone calls.  He finally heard from the nurse late in the afternoon, and she basically told him that the neurosurgeon wasn't in that day, and that there wasn't anything he could do.  At that point my sisters were both insistent that he HAD to do something, and we told him to go to the ER.  He called his dad to take him, and when they got half way there, the nurse called back and told him that the doctors were very much aware of his situation, that he was scheduled for a "clean up" surgery on Tuesday, and not to worry about it.  So they turned around and headed home.  I didn't know what to think when I heard they were putting him off until Tuesday.  I figured they were probably dropping the ball!  Either way, I was mad they weren't seeing him.

 

Thursday the nurse called again and changed her story.  She told him to get to the ER.  So he went to the ER, and NINE HOURS later he was admitted.  So he didn't get admitted until Thursday night.  Friday morning I came home to be with him and sent the kids to stay with my parents for the weekend.

 

At this point they have him on heavy antibiotics until the culture comes back.  It takes 48 hrs to get those back, which means if they had done their job last week in the ER, we would've had the culture back 5 days ago and we could press forward.  But now we have to wait until Monday before they do surgery.  So he has to sit in the hospital bored to death until Monday.  At this point they think it's the acrylic plate that got infected.  They did a CT scan, so they don't think it's in his brain, they think it's just on the surface.  So the plan is to let the antibiotics clean up the area for a couple days, then Monday he has to have a surgery to open up the incision, remove the plate and clean up the area, and replace the plate with a different one that is more breathable.  If they go in and realize it's worse, the surgery will be more invasive.  We're REALLY hoping it isn't in the brain!!!  We've already dealt with that before, and it was awful!!! 

 

So here we are, once again 9 weeks post-craniotomy surgery, dealing with another infection.  And I believe this will make six surgeries in less than two years.  To top it off, he was supposed to have another Avastin treatment yesterday, but they can't give it if he has an infection.  So his clinical trial stuff has been put on hold as well.  Just writing this last part is making me sick to my stomach.

 

This blog was meant to be an up-lifting, positive experience for me as well as those who read it.  I feel like I never have any good news to report anymore!  It's depressing, but I guess it shows the real picture of what people with cancer deal with. 

Catch-up Time

So much to catch up on, I don't know where to begin..

 

I guess I'll start with Brynlee.  Some of our friends nominated Brynlee to be a "Forever Princess" at a Princess Festival at Thanksgiving Point.  She was very honored and excited!  I would definitely concur that she is worthy of the title.  She has been a huge help this past couple years and I don't know what I'd do without her!  The Princess Festival definitely made her feel like a princess for the day!

 

 

Now moving on to Jared.  About 3-4 weeks ago I realized that Jared's sense of humor hadn't returned since the surgery.  I casually mentioned it to him, and he agreed.  It's not like he's a different person (which is why it took me a while to notice), but he seemed a lot more serious and almost TOO polite.  I guess that's not bad, it's just different than what I'm used to. :)  We had a get-together with some of our college friends a couple weeks ago, so I told him he had a few days to get his sense of humor back before we met up with our friends, which we both laughed about.

 

Love these guys!  We are so lucky to have made
life-long friends while attending school.

Well, his sense of humor is returning, slowly but surely.  A couple nights ago he asked me where the toenail clippers were.  I got them for him, and the next morning I found his little pile of toenails - they were the longest things I've ever seen!!  So bad that I made Brynlee throw them away.  I texted him and told him I had found his collection of toenails, and that IT WAS DISGUSTING!!!  He responded, "That was meant to be a gift."  The old Jared is back!

 

Jared returned back to work a couple weeks ago.  Today now completes his third week back.  His first day he went to the office and made it about 5 hours, which was pretty good for him.  The rest of the week they allowed him to work from home, which was nice.  He had a really hard time sitting up for long periods of time.  He kept getting headaches and had to go lay down.  He was scheduled the following week to work in Park City, which is about 45 minutes away.  I told him I didn't think it was a good idea and told him to try to get re-assigned to somewhere closer.  He said that a co-worker was going to take him and bring him home (which was WAY out of the way for the co-worker), but I was worried that he wasn't going to make it for such long days.  But he was determined.  The first day he came home with blood on his shirt.  He had blacked out as he stood up for lunch, and his hand was gripping something, so it basically ripped his finger on the way down.  He said he thinks he was out for a couple minutes.  The next day he blacked out again, this time not as bad, and he just fell to his knees.  The third day he called me about the time I expected him home and told me that he was at a Wendy's waiting for his ride to the REAL soccer game (the professional team here).  I was NOT okay with it!  He had just put in an exhausting day at work, but he said that he had already committed to go, and that he was going.  I was really worried about him blacking out at the stadium!  I honestly thought I would get a call that night to rush to the ER.  But he did it.  He left at 8am and got home at about 10pm.  So he's been putting in LONG, hard days.  He struggles every day.  I hate sending him to work because I know he's having a hard time, but he's determined.  I'm certainly grateful for his sacrifice on our family's behalf.

 

So we're hanging in there, taking it one day at a time.  We won't have any real news until the end of July when we get the results from another MRI.  We are just grateful right now that he is tolerating the treatments okay.