Pot op (2) day 12, or 13,764

I wish recovery was a straight line. 

I used to love the ups and downs, twists and turns of roller coasters. 

I wish I didn't feel blue... again.

When people are around I am able to be optimistic and 'happy'.

The second I'm alone, I fall to pieces.

I can't even explain it to Jason. He probably thinks I'm nutty for crying a lot lately.  He assures me that his oath was NOT "Just in the easy, good times" which makes me feel better. 

 

 

I always thought I was a fighter... Superwoman would never give up.

I almost am at my breaking point.

Life is not bad enough (right now) to wish for death, but it's not good either.

The kids wear me out, even though they are on their best behavior.

I'm lonely, even though Jason is on the computer in the same room as me.

The involved-mom has faded away. I'm lucky if I make it to a sporting event each week.

My only chore around the house is to sit and fold the laundry.

I spend most of my day exhausted in bed.

What I'm struggling with is this:

Am I depressed and pitying myself OR

Am I totally worn out from recovery.

I wish I literally knew someone going through this.

I met a 19 year old at the surgeons Fri who just found out she needs a similar surgery. I WISH I had given her my contact information. I'll try to get it to her through the Drs office on Tuesday.

I was at the Dr unscheduled bc my drain started filling with pale yellow frothy stuff instead of old clear brown blood. I was afraid of infection. Then I remembered I'm missing part of my skull and got really scared. I had Jen Simmons come look at it, then Mandy left work early to look at it. By then, my parents were on their way to drive me to Philly. I'm loved by so many people, yet I feel alone. Weird, huh??

 

In hospital

 

Day 10

 

*i had the grenade with 2 feet of tubing and the white thicker type drain

As my life tends to go, the Dr pulled out my drain 5 days early and put in  a stitch to close the hole. The drain was huge!  I though 3-4 inches long, Google says 7.5 inches long!!  Well, today the stitch popped open. What do you do on a Sunday?!?  I bandaided it and am praying it does not get infected. Why am I always doubting myself and worried Drs will think I'm over reacting?!?  Why do I do that to myself? 90% of the time, my hunch is correct. Why?!?

My newest wound feels like it's ripping... 

 

And this hair... still just baby shampoo which leaves my scalp grosse. No hair cuts or hair dyes for 10 more weeks. I'm seriously considering Jason just buzzing it all off for me. 

Maybe I need sleep, and some Tylenol...

Another day I'll blog about the 2 inch diameter hole in my  rain that still needs fixed, questions about how I'm ever going to return to work in 4 weeks, how I'll drive without a slowed reaction time, etc...

Brain Drain Day 10

I'm sick. Sick of being sick. Sick of being in pain. Sick of laying around. Sick of feeling blue. And definitely sick of the antibiotic side effects. My body was completely wiped out of all good bacteria, so I'm dealing with so many other issues. I've seen a Dr Mon, Tues & Weds this week. There's no quick-fix, so I wish I could go to sleep for the next week. 

Jason has been amazing.... the house runs smoother without me, then it does when I'm involved. The boys are so protective of me, making sure they're not hurting me. The girls are a huge help around the house too. Jaylee does the laundry while Jennibelle takes care of the dishes. I'm really blessed! 

My parents and sisters have really stepped up, helping anyway they can. I am loved.

I don't feel like Superwoman these days, but I stare at the cape in my closet and know that I'll be back... one day. 

In 2 or 3 months I'll go under the knife the reconstruct my skull. If it's elective, at this point I will not go through with it. I'll have to talk to my surgeon and see. 

post-op #2, day 2

I am sill on the Neuro floor. My nurses have gotten incrrasingly better, since I've been here. I'm not sure why I didn't go to the ICU. All the nurses here are not familiar with brain drains, because most pts with them go to the ICU... ?

 

 

Anyway. The night after surgery was hell... so much pain!  No nausea, dizziness or whoiziness. Just pain. I had a traveling nurse who was very kind but not aggressive enough for me.  I cried for 2 1/2 hours straight trying to get my pain controlled. Once the Neuro Dr saw me, they put me on s PCA pump.  Whew!!  IT didn't help too much bc most of my pain is muscular, from where they cut through and cleaned my muscles.  I was ordered strong muscle relaxers to be staggered every four hours,  but the nurses fought because that was not the normal way to do it.

 

 

 I've also felt feverish and "icky" from the time Mandy and meg visited on Weds night until Thurs afternoon. No one seemed to care since I am not running a fever (98.8')- even though my pain meds lower a fever. Aye aye aye.  I'm feeling much better tonight!

 

They decided to do an MRI to be certain that the infection did not get into my brain. I'm sure it will be negative.  I'm hoping that the NPO AFTER MIDNIGHT order was a just-in-case order. Fingers crossed!!!

Hopefully I'll sleep good tonight!  

Hoping my parents are surviving at my place!!! 

I'm feeling 99% better than Tuesday night!!

 

 

Valentines Day 2017

He gets me!!!

 

And 3 days later...

 

Post-op appointment disaster

I was excited to see my surgeon today.  I was excited for him to take me off of full restrictions. I was excited to show him the abscess on my wound that ruptured during my sleep, thinking maybe he'd just give me an antibiotic and send me on my way. I was excited to go to Ikea and walk around for as long as I could (currently, I can walk around for 30 minutes at a time). I was excited.

Until he looked at my wound, told be that there was no obvious infection/abscess, that it is probably CSF (cerebrospinal dluid- brain fluid) leaking, that I would be admitted right away, I'd have a CAT scan of my head stat, and that I'll go to the OR in the morning for another brain surgery. Then I wasn't excited. Then I was scared, confused, a little mad and nervous. So then... I laughed. Why not?!?

So, Jason & I sat in his office for 1 hour while they got everything approved by insurance.  Considering we got a $102,000 bill from the hospital this past Friday, saying that nothing was covered by insurance, we joked that they were, again,  giving their approval - just not agreeing to pay for it.  One thing we are good at... we always laugh when we're together, no matter how bad the situation.

Then we walked across to PA hospital and sat in the admission waiting room for another hour before moving on up to the neuro floor.  My nurse here is bizarre. We'll leave it at that.

Infectious Disease Drs have been in and are starting me on Vancomycin and another IV antibiotic. Then they'll send off lots of cultures tomorrow to see which meds, exactly, I have to be on. They said I could go home on oral antibiotics, or a PICC line, or be stuck in here until the weekend if the cultures grow nothing. I'm so confused. They said maybe the Neurosurgeon won't have to reopen my skull IF he opens my scalp and finds just a large infection. However, my CT scan did not show any abscess nor did it show hydrocephalus, so no shunt needed (another option we were warned about). That's good news!

So, basically...

NO ONE KNOWS WHAT IS GOING TO HAPPEN IN SURGERY TOMORROW!!

Happy Valentines Day to us!!

Boys in my house... and they are not my boys

14, and interested in boys!!  I certainly don't blame her, I was too!  Today was the first time she had a boy over. She and Owen watched Get Smart and it was nice to hear her laugh and be herself. Then they attempted Peanut Butter Cookies. Attempted, I repeat.

At one point he had his arm around her during the movie. When I went through the tv room, I expected him to jump across the couch... nope!  Still not sure how I feel about that.  I haven't told Jason about that yet.  Hm.

They had a fun time. So fun, that an hour after he went home, he called and invited her to a Hershey Bears Game. His Mom no longer could go with him, his Dad & his sister. I let her go... Poppop took all of the boys to the same game tonight. There will be many eyes on her tonight, lol!

So it begins...

1 Month Post-Op

Yesterday was one month postop. Jason's parents left five days ago, and the day they left I woke up feeling like a different person. Praise Jesus. He really answered my prayers, because I was struggling and terrified of what was going to happen after they left. The dizziness is just about gone, but I am still having some pain in my neck area. It just feels very tight and is still swollen. I think I should be doing my range of motion and stretching exercises more than I have been. It's so nice to be on this end of things. I even went to the grocery store with Jason today, it wasn't as easy as I thought it would be, but I did manage to walk up and down every aisle and we made it out there without me hitting the floor. I call it a success. 

 On a sidenote, my hair is just about grown in so that you can't even tell that there was surgery. My scar is covered up. However, I can't wait till I can actually shampoo my hair. I feel so icky and gross.

 On a side note to the sidenote, I went with Mandy to a neurologist in Philly this past Wednesday and he also gave her the all clear from the dementia fears. That was a huge relief.