Wednesday, December 2, 2009


So since my third surgery I have just been resting, healing, and eating. I did get to go home for Thanksgiving. It was an amazing trip. I got to see both sides of my family and my best friends from high school. Nothing crazy happened in STL. Thank goodness.

I went to the doctor today and it seems like I'm still on the path to recovery. They took all my stitches out and picked all my scabs off. They didn't find anything that wasn't supposed to be there and they said that all the skin looked healthy and it seemed to be healing.

So, as of now no more surgeries until I decide whether or not I want to put the metal plate back in. Still on antibiotics for at least two more weeks or until my head heals up all the way. Better safe than sorry!

Wednesday, November 18, 2009

#3 went well.

Procedure #3 went well. It really only lasted about an hour from the time they took her back to the OR till the time she was back in pre-op (It was really late so they just used that instead of the PACU). I panicked at first when I got a call. They just debrieded her wound and left it open to heal from the inside out. It's packed with a wick like material and the wick is hanging out a little bit.

Amy's in good spirits, all things considered. She's getting really sick of the hospital and having to keep going back to the hospital. I'm getting sick of the hospital as well. Good thing we have a week vacation coming up...

Tuesday, November 17, 2009

Surgery again. Third time's a charm?

Today (Monday), when Amy woke up, I looked at her incision and noticed a hole about 1 cm X .5 cm and about .5 cm deep (that was the PA's measurement). She called the surgery clinic, they told her to go to the ER, they triaged her to Urgent Care, and she saw her neuro team (the chief resident who did her initial procedure and the PA who's been a part of the team throughout the whole process as well).

They admitted her and are going to have to do a minor surgery tomorrow (Tuesday) to open her back up and try a new way to close her wound/incision. Long story short, between the ridge of her skull (which is there cuz they removed the plate) that is putting extra tension on her skin and her skin being weakened by infection, the sutures weren't holding. The surgery's scheduled for 4 PM tomorrow, since she was a late add-on. There is a chance it could be moved up sooner, which would be nice since she can't eat after midnight. We shall see.

We shall see...

Friday, November 13, 2009

Update: The Good, The Bad, and The Weird

It's been awhile since I've updated. So here you go!

The Good:
The antibiotics are working wonders on my head and my infection.

When I am awake I'm feeling pretty darn good. My pain is quite a bit less than the original surgery (probably because I don't have much of an infection anymore).

Plus, my Grandma Harfst is here to take good care of me (some would say spoil) and drive me to my appointments when Erin is a work, school, or whatever.

The Bad:
The antibiotics make me tired and nauseous, it tastes SO bad and I've been sleeping for about 12 hours a day on average.

I got some of my stitches taken out today but somehow the scabs from my incision had grown over some of them. Getting those stitches taken out was quite painful.

The Weird:
I'm actually taking two antibiotics, one through a "hone catheter" or a central line through my neck, and the other is just a pill I take by mouth three times a day.

Right before I was going to get my stitches out I asked my doctor if I should be worried about a squishing noise that I heard when I would dry off my incision after a shower. He said not to be worried because it was probably just my brain squishing around behind my skin where the skull is missing (I guess that was supposed to make me feel better). However when the nurse began to take the stitches out he got to a certain point my head began leaking fluid like a dripping faucet. Erin ran and grabbed gauze for my head, Grandma ran and grabbed paper towels for my neck and hands that were getting leaked on. Ends up that I had two major sections of my head that were not healing but rather just holding fluid (so much for not worrying). They removed the stitches that they could and re-stitched the sections that were not healing pulling them even tighter (OUCH). And I also learned I'm going to have to keep taking the antibiotics for and extra week since my head hasn't been healing correctly.

If you have any questions comment, email, text, call!

Much Love!

Monday, November 9, 2009 least it's not MRSA

Hey Everyone,

Amy came home on Friday and is taking it much easier this time around. She's on IV antibiotics that are dispensed through a baby bottle-like thing that she changes out every 24 hours. It's pretty easy.

Her official diagnosis was MSSA (Methicillin-sensitive Staphylococcus aureus), which isn't as bad as MRSA (Methicillin-resistant Staphylococcus aureus). Basically, they grew cultures and tested them to see what type of antibiotics would work best on them, and came up with a combo of 2 - one oral and one in IV form. She has a central line and had her drain taken out of her head on Thursday.

She's a lot more tired this time around, most likely because of the infection and the antibiotics. Her grandmother is coming back into town tonight to help out again for the week. Thanks Grandma!


Thursday, November 5, 2009

Post Secondary Surgery Update

Hey, It's Amy!

So I just wanted to update everyone real quick. So they (the doctors and such) say I have some kind of staph infection, still trying to narrow down exactly what type. I'm probably getting discharged tomorrow (Thursday) but I will need to continue taking IV antibiotics for about two weeks. Which means I'm going to have a "catheter" (sp?) in my shoulder that I will be able to get IV antibiotics at home. (They will teach Erin and I how to give them before we leave the hospital.) That way I can get the best medicine at home for the amount of time that I need!!!

I'm walking pretty much on my own but I do need someone with me still just because after awhile I get a bit light-headed and I would hate to fall or something crazy like that. I've been feeling pretty good and really lively today. I have a lot more energy than the last few days and I've been up and walking around (at least 4 times a day as prescribed by my nurse).

Thank You for all the continued support. I could not do all of this without all of your love, support, prayers, juju, etc!

Love and hugs!


Tuesday, November 3, 2009


Amy's in her room, ate real food for dinner, isn't on oxygen, and is pretty feisty and funny. She has a tube draining all the fun stuff from her head (as you can see in the picture), and I've started calling it her tail. She's in really good spirits and her pain seems to be managed pretty well right now (knock on wood).

Thanks for all the prayers/love/etc!

Surgery #2 DONE!

Amy's in the recovery room and the surgery went well. She definitely had an infection (duh?) and they cleaned her out and stitched her up. They removed all foreign objects as well (dissolving sutures, mesh plate). They say she might need to have surgery again to put in a new plate once everything heals but more will be revealed with that one.

We'll update more tonight/tomorrow.

Monday, November 2, 2009

Surgery...Again :-(

Hey Everyone,

It's Erin again (Amy says she's "too crabby to type"). Got some not so good news. Amy's incision is pretty infected, so they admitted her to the hospital again this afternoon and are going to do surgery tomorrow to debride the infected area under her incision. Basically, that means they're going to open her up along the same incision, clean out everything, remove the mesh "plate" covering the hole in her skull, irrigate it (wash it out), and sew her back up. Her attending surgeon says that the mesh plate is more cosmetic than anything, and that she can have surgery again in the future to put a mesh plate in if she wants it. They didn't say the plate was the cause of the infection, but they want to remove any foreign materials to help ease the healing process.

Basically what happened: on Saturday morning, Amy woke up with a little yellowish drainage around her incision site. It wasn't pus per se, but wasn't normal. Throughout the day, her temperature became elevated to 99.8 (not a fever technically, but higher than normal). Finally at 8 PM we went to the ER because she was showing some beginning signs of infection. She had a CT scan done and met with one of her neuro residents, and they decided that she was sort of on the edge of infection but not clinically infected at that point. Her labs were a little on the abnormal side but not enough to indicate infection. They sent her home with oral antibiotics and more pain meds. Then Sunday evening, Amy's temp jumped to a fever, but she didn't want to go to the ER because she didn't want to pay her copay just to be sent home again. We decided to wait till this morning (Monday). When we went in, Amy's temp was over 102 and her pulse was really high. Her entire neuro team that did her surgery initially ended up coming in to see her in the ER and decided another procedure was the best way to go.

We don't know the time of Amy's procedure yet but we'll let you know one way or another.

That's all for now.

Wednesday, October 28, 2009

"I Don't Have Cancer!!!" (Sez Amy)

Great News! We just got back from a follow up appointment and Amy's tumor wasn't cancerous/malignant! Initially they thought it was an eosinophilic granuloma (basically a benign tumor made of immune/antihistamine cells), but pathology reports indicate that it is an epidermoid cyst. They say that it has a possibility of growing back but most likely it shouldn't. And it's benign!

Amy also got her staples out today. It was a little early, but we weren't able to get an appointment any other time. Amy was in a lot of pain when they were removing the staples, and Amy says, "I scared the girl." Apparently the first-year resident removing the staples hadn't removed staples from someone who yelled as much as Amy before. She also started with the worst staple, so it wasn't so bad after that. And the staples are out!

Amy was discharged from the neurosurgery service today, so she probably won't have to see her neurosurgery team again.

We also are sitting in the midst of a major snowfall, and some people are saying we might get a foot of snow!

Amy's grandmother is here helping out a lot! It's been such a blessing to have Amy's family here helping out and just keeping her company when I'm at work and such. THANK YOU!!

Thanks again for all your prayers/juju/thoughts/good vibes/etc. They helped a lot!

Saturday, October 24, 2009

I'm home!

I made it home yesterday. I'm still pretty out of it and kinda loopy but I'm glad to be at home on my own couch and my own bed, breathing regular non-hospital air. Just look a long shower to clean out my incision and Erin and Aunt Barb both say it's looking really good. It's already beginning to heal and it doesn't look infected! I'm supposed to get my staples out this coming Friday. We just have to keep watching for swelling and infection around the cut site. I'm starting to feel better slow and steady. Can't wait to be 100% again!

Thank you all for all your support, thoughts, and prayers. I know that all those things are helping me heal that much faster.

I love you all!


Amy's Home!

Amy's had an eventful day! She got discharged around noon, we got to enjoy a lovely meal at our favorite Chinese restaurant, she saw the kitties, and we played trivial pursuit. She's still in some pain, but it's mostly being managed by pain meds and distraction, and it should get better as time goes on. She's tired (we're all tired), but still active and able to do things she enjoys.

Hopefully she'll update her version of events tomorrow!

Friday, October 23, 2009

Thursday, October 22, 2009

Movin On UP!

Lots of good news!

When we got to the hospital today, Amy was up in a chair! She had already gotten up and did a lap around the nurses' station before we got there too.

They also discontinued her IV fluids - they kept it in but she's not connected to anything anymore. She's taking all her meds by mouth, which is awesome! They also took out her catheter, so it's easier for her to get around.

She's also now on a regular diet, which means she gets to eat all the yummy food from the potluck and gift basket :-).

She's still in some pain. They had to cut through muscle to get to her "bump," so it's causing her a good deal of discomfort and makes it difficult for her to smile fully. But she's taking some meds (but she's trying to take as few as possible), and it's helping. And she's getting lots of rest.

Best part of the day - Amy got moved to a med/surg floor! She's got her own private room (maybe one of the perks of knowing someone who works there...?), and it's pretty fancy! And it'll be easier to visit her since we don't have to trade visitor passes.

I think that's it for now. Maybe she'll be the one updating tomorrow!

surgery day recap

Hey Everyone,

All things considered, yesterday ended up being a good day for Amy - the surgery went well, they were able to remove all of the tumor, they think the tumor's benign, they didn't have to cut into the membrane around her brain. She's progressing pretty well, is able to keep fluids and food (crackers) down, and is in good spirits. She's no longer on oxygen, her vital signs are looking good, she had her arterial line removed, she got to sleep on a normal pillow instead of the foam ring, and she's able to take pills by mouth.

Here's a few post-op pictures: They might be a little graphic.

Just after surgery (the blood around her incision is totally normal, so don't be alarmed):
Close up of her incision/scar:

Amy's first meal after surgery--popsicle and beef broth:

No more oxygen tubing and a normal pillow! This is Amy's ET impression:

That's all for this morning. I'm looking forward to getting up to the hospital and finding out how she slept last night!

Progress :-)

Just came from the hospital and wanted to give a real quick update:

Amy had a really good evening. She's still struggling with pain, but they are working on finding the right combo to work for her for now.

  • Amy is now breathing on room air - no more oxygen through her nose! And her O2sats were good while we were there too!
  • They took out Amy's arterial line (an IV that went into an artery)
  • Amy ate beef bullion and half a popsicle for dinner. When we came back after shift change, Amy ate CRACKERS! I'll post a video of her song in the morning. She also drank some chicken bullion and took some pain meds by mouth--a big deal since she struggles with taking pills anyways, and the sooner she can take pills by mouth, the sooner she can start doing other things (like go home...).
So all of these things are good steps forward. And now that she's able to take pain meds by mouth, they have more options to find the right combo that works for her.

Thanks again everyone for all your prayers and love and support!

Wednesday, October 21, 2009

Amy's Awake!

We just saw Amy! She can only have 2 visitors at a time, so we're swaping out.

It took Amy a little while longer to wake up than expected, so we didn't get to see her until she had a room in the SICU (surgical intensive care unit). She woke up with quite a bit of pain at first, so they medicated her right away and she's still pretty loopy. When Tom and I were walking toward her room, she saw us first and waved at us. She's got a horseshoe shaped scar with staples above her right ear. She's also got some IV's going, and she's on oxygen, which is all normal for her procedure.

She's in really good spirits, alert and oriented (just a little loopy), and was really glad to see us!

Good News

Just wanted to let you all know that Amy's surgeon just came out and says the procedure went well. Amy's probably headed into the recovery room right now so we haven't seen her yet.

I'ma try to explain what the surgeon said but since I'm going on 4 hours of sleep my language skills are a little iffy.

The mass was a little bigger than they expected, but they were able to get it out, and removed the edges of her skull that surrounded the tumor (the surgeon said they were egg-shell thin). The surgeon said that the dura (the outer layer covering her brain) was pretty worn down, so they put a synthetic dura to replace it. The doc said that there's hardly any difference between the synthetic one and the original, which is good. The doc also said that since the tumor was bigger than they thought, her brain was pressed in a little bit. She said that brain matter bounces back pretty quickly, and this could lead to some bruising (like a concussion). They'll keep an eye on this. They also patched over the hole in her skull with a type of mesh plate that will eventually harden as scar tissue and the bone grow back over/through it.

Also - the surgeon thinks that this tumor has been growing slowly over the past several years (she said 10 or so). She says that it coulda been from when she bumped her head or something like that. So does anyone remember Amy bumping her head when she was about 13?

Thanks to everyone for all your support!


Hey Everyone,

Amy just went back to the OR. In Pre-Op, she met with the anesthesia team and some of the docs on her neurosurgery team. She was kind of bummed cuz she couldn't have her dad and aunt with her in pre-op, and pretty anxious.

One of the residents, Dr. Bell, drew on her head:

He also said that they're going to put her on some anti-seizure meds (along with her anesthesia) so she doesn't seize during the procedure, and that since research shows an increased risk of seizures after surgery, she'll probably be taking some for a few months to prevent her from having a seizure.

As soon as the anesthesiologist gave her something (not sure what), she brightened up and was a lot less anxious. And she kept repeating "I'm so dizzy!"

That's all I got from the hospital. It did "snush" this morning - we walked out to a car covered with a strange mix of snow, ice, and rain. The cold wasn't that pleasant with our newly shaved heads!
Thanks everyone for all your prayers, thoughts, and love. Will update more later.


Sunday, October 18, 2009

Pre-Op appointment/update

Hey everyone, It's Erin here...

Just wanted to give a quick update. Amy's dad and brother came into town on Thursday, and the four of us (Amy's "entourage") met with the nurse practitioner on the surgery team on Friday to do Amy's pre-op H&P (history and physical). She was a little nutty, but was able to answer our barrage of questions and she actually has had a similar procedure done herself!

We also found out that Amy's attending surgeon, Dr. Beauchamp, is a St. Louis native! The nurse practitioner even knew to ask what high school we went to.

Here's a link to the neurosurgery team who will be in the OR for Amy's surgery:

Here's another link to Dr. Beauchamp's profile through University of Colorado:

Amy's procedure itself should take about an hour, and she'll probably be in the OR for about 2-3 hours total with prep and clean-up time. After that, they'll most likely keep her in the SICU (surgical intensive care unit) for observation overnight, and if all goes well, she'll move to a regular med/surg floor for 2-3 more days before she'll get to go home.

The NP said that her total recovery time should be approximately 6 weeks, depending on how everything goes. Hopefully she can go back to work sooner than that, but we'll just have to play it by ear.

Joey just left Denver this morning and flying all day to get back to school. Amy's dad is staying at a hotel across the street from the hospital's campus, and we're just hanging out and trying to enjoy the beautiful weather Denver has had this weekend.

Much Love!

Wednesday, October 14, 2009

Talked to the Neurosurgeon...

So I saw the Neurosurgeon today.

Short version: I'm having surgery on Wednesday October 21st.

Long version: I got to my appointment on time a 9AM. The doctor finally came in at about 10AM. The first thing we did was go and look at my pictures from the CT scan from the other day. This is basically what it looked like:

So what's happening is that the tumor somehow is in the place where my skull should be (which is why it hurts when someone pushes on my bump). The tumor is for sure touching my brain but they cannot tell from the pictures whether or not there are abnormal cells from the tumor IN my brain. They won't know until they actually take the tumor out and look at my brain. Then, once they get the tumor out as much as they can, they will be rebuilding me a fake skull (officially its called a cranio-plasty). There are risks, as with any surgery, such as pain, bleeding, infection, brain damage, weird looking scar, and others.

My Pre-op appointment is this Friday at 9:30AM. At that appointment they will be getting a full family history and doing tests to see what kind of anesthesia they will need to use. And at that appointment I'll get to ask all the questions that I need to. Then, like I said at the beginning, I'll be having surgery next Wednesday. They said it will be early in the morning but no exact time was given so far. Hopefully I'll be able to set up that time frame on Friday too.

So, Family, if there is any health history that I don't know about that I should please let me know before 9AM this Friday! Call me, e-mail me, text me, whatever, just let me know.

I love you all! Thanks for all your love and support!

Saturday, October 10, 2009

Another Phone Call

So last night I got another phone call from my doctor and I actually got to talk to her!

She explained a little bit more about my bump. She said it is ONLY on my skull (not in my brain!! Yay!) It's about 1"x1"x1.5". She also told me that I definitely needed to have surgery to get the tumor removed. If I don't have the surgery the tumor will continue to grow and eventually push against my brain and cause even more trouble. The surgery is considered major surgery since I am going to be under anesthesia. Plus it's scary because it's my head.

I have an appointment with a neurologist on Wednesday because he/she has way more knowledge of tumors and surgery and such. We'll be going over my CT scans and what the next steps will be. Hopefully we'll also be able to figure out when my surgery will be so I can plan and of course so I can let you all know what's going on too.

I'll update more as soon as I get any information.

Background and First & Second CT Scans

Hi everyone!

I just wanted to let you know what is going on with me.

I went to a new doctor about a month ago and told her that I've had a bump on the side of my head for about two years. During those two years I've had a few different doctors take a look at it and they all told me not to worry about anything. But recently the bump has started changing texture from squishy to hard. So my new primary care physician ordered a head ct just to check the bump and make sure that nothing was wrong. I went in yesterday to get the scan, which was easy, I just had to lay still for about two minutes. They told me to wait until Monday to hear from my doctor and sent me on my way.

I went to get some vitamins from the pharmacy at the hospital while Erin was watching the end of the baseball game in the radiologist waiting room. While I was standing in line Erin called my cell phone and asked me how far away I had gone and told me that I needed to come back right away for another scan with contrast. So I headed back, went in pretty quickly and got an IV put in and then another scan. It went quickly but this time they told me my doctor would be calling me later that evening.

Of course I missed her call but she left a message letting me know that my bump is definitely a tumor. She said it's probably benign but they can't really tell that from a ct scan. My doctor sent the pictures over to a neurologist to take a look, so I have an appointment with a neurologist next Wednesday to go over the results and to set up any necessary appointments, tests, or procedures. I'm also going to insist on a biopsy just to make sure the tumor is not cancerous. I'm not taking any chances.

I will let you all know how everything on Wednesday goes and anytime I get more info I'll update everyone on here.

I love you all!