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Archive for October, 2009

Stalled Out

My recovery has been temporarily put on hold due to H1N1.  Yeah, you read that right.  H1N1.  😦

10 days ago I started sneezing.  Trying to be optimistic I attributed it to a change in the weather or worse case scenario a run of the mill, common cold.  Although sneezing was incredibly painful to my surgical site I gritted my teeth and hoped sudafed would ease the symptoms.

A few days passed and the sneezing was accompanied by an annoying, and very painful, cough.  I continued to hold out hope that it was only a cold and dosed myself with sudafed.  This past Monday rolled around and I found myself calling my nurse practitioner for some pain medication as the surgical site was aggravated enough that 800mg of motrin couldn’t/wouldn’t dull the pain.

Then everything took a turn for the worst.  Monday night I started running a low-grade fever and found myself hugging the toilet bowl.

Tuesday the fever kept climbing and the vomiting continued.  A flu swab at the NP’s office came back positive and I was definitively diagnosed with swine flu.  Even with the precautions we’d been taking to avoid bringing any kind of sick germs into the household, they had come in and attacked the person with the weakest immune system.  Truthfully, it felt like a huge defeat and the diagnosis was accompanied by many a curse word.

I started immediately on Tamiflu to help lessen the severity; I think we succeeded in catching it early enough that it didn’t hit too hard.  I’m still coughing a little and feel completely drained, but much improved over earlier this week.

Now our hope is that no one else in the house gets sick.

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Life in Pictures

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Kate and I, the night before heading to Salt Lake City.

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Post surgery in the Neuro Critical Care Unit.  I think people weren’t prepared for the Medusa inspired hairstyle.

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My beautiful Princess comes to visit.

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Not a bad view out the hospital window.

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The best part of the hospital was the 24-hr Starbucks on the main level.

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Ditching the wheels for a stroll around the floor.

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Wednesday, October 7th — 5 days post surgery

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My arms took a beating from IV’s, blood draws, etc.

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The view of the Valley off the back deck of the condo.

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Being silly, obviously.

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Terrorizing shoppers at Smith’s.

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Monday, October 12th — 10 days post surgery.

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Dakota enjoying my increased need for rest.

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No News

Really is good news.

Life is progressing on track here in our household.

Recovery is going well.  Much better than I anticipated, and for that I’m grateful.

The sutures were removed yesterday making the incision feel much better.  For the most part the incision itself doesn’t bother me (minus the occasional itch of healing skin).  I’m now feeling the pain of what was the “trauma” induced by the surgery.  Even that pain isn’t bad though.  Easily controlled by narcotics that I’m trying to taper off of.  And by far no where near the pain of the headaches pre-surgery.  At times I feel as though I’m taking the easy way out by taking the narcotics.  As if I should be able to tough my way through this.

After “toughing” my way through the pain for so long, I believe that it’s alright to use the pain medications to get through this comfortably.  I don’t need to be tough all of the time.

The fatigue is the hardest battle right now.  My body is exhausted, especially my neck.  The muscles evidently need time to heal and regain their strength.  Simple things such as taking a shower and going to an appointment wear me out, having to hold my head up for a length of time.  This will get better with time and perhaps physical therapy as well.

My days are slow and quiet — I rotate between the recliner, the couch and the bed.  Today Cris and I took a short walk/stroll around the neighborhood to enjoy the beautiful fall afternoon.

The change in the pace of our life is nice.  Perhaps we needed to be reminded to slow down, if only for a short time.

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Sorry, this came in after I had shut it down for the night. Cheers! Jess

Sorry to everyone for the delay in updates regarding Amanda’s progress. The last few days have been busier than expected, especially occupying many of the waking hours of a very active toddler. After the last email update that was sent, you all were aware that Amanda had been discharged from the hospital and we were spending the remainder of our stay in Salt Lake City letting her rest and recuperate at the condo we had rented. While most of those days were good for her and she was getting stronger, there were bouts of fatigue, stiffness, and soreness, which could only be expected. Yesterday, we were a bit surprised that Amanda had unexpectedly felt sick/nauseaus again after a number of days of that being absent. Since we were planning on leaving town the following morning, we decided to head back to the hospital to consult with the doctor and nurses, just to be safe. Luckily, our fears were put at ease that everything with her incision, etc. seemed to be absolutely fine and that the sickness was often a common after effect post-surgery. As I have mentioned in past emails, the docs have told us that this is related to the change in cranial pressure due to the surgery. Before, she had a very high pressure inside her skull due to the Chiari malformation squeezing on her brain. Now that the pressure has been relieved, some screwy things can and do happen as the brain tries to make the adjustment. They prescribed some familiar meds, to handle the sickness, and also added some additional meds to help with inflammation.

This morning we packed up the condo, checked out, and had some breakfast on the way out of town with close friends. With one brief pitstop at the airport to drop off Amanda’s sister (returning home to Michigan), we hit the road for Idaho Falls. We arrived home in the late afternoon, but with time to spare to allow Kate an opportunity to romp around he house and yard with one of her very favorite playmates from around the corner. Amanda has been resting comfortably most of the time since we’ve been home. Things seems to be going well and we hope this will only continue each and every day to come. It’s been a long trip and it seems like forever ago that we packed up and began this odyssey only last Thursday. A lot has happened since then but I can honestly say that we feel this is a new beginning on life for Amanda. For a brain surgery patient, her recovery and progress has been nothing short of remarkable and we feel that it is in large part to the abundant support for you all. Thank you again for everything…

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I had another brief chat with Amanda today and I know she got out to the grocery store and piloted one of those little motorized carts.  I warned her that they place your face at fart level so to be ware, she informed me Cris would be her biggest offender and would stay ahead of him.

She missed the nursing staff so much that she went back in to visit them, desperate times I guess.  It turns out she had a rough day in regards to belly upset so she went in to be looked over.  It appears as though everything is healing well, no signs of infection. They changed some meds around to ease her nausea and put her on some steroids to reduce the swelling.  The nurse told her that they wanted her to stay over night and Amanda had a moment of panic thinking they were re-admitting her.  They just wanted her to stay in Salt Lake City another night.  Phew!  Their plan is to still head back tomorrow after they drop her sister off at the airport.

Calling a head before stopping by is requested…except me.  My awesomeness allows me free access.  No, I’ll be calling too.  I’m a lot of work so she needs to make sure she has the energy.

It sprinkled some non-sticking snow in IF today.  I hope everyone is warm and cozy.  I’m excited my friend is coming home.

Cheers!

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What’s Up?

This is Jess.  I was able to chat with Amanda for a little while on the phone tonight and she asked me to pop in and give a synopsis of the convo minus the dirty jokes and bad words.  I would never…  She is doing pretty good.  She has short bursts of energy where she tries not to push herself too hard because she’s realized that for every 20 minutes of overdoing it, she needs an hour or more to recover.  We all know how hard it is not to try to do more when you finally feel well. She’s finding the balance.

Her phone and computer time is being ‘monitored’ so that she doesn’t over do it there either.  At this point she doesn’t really have the energy to expend in that arena anyway. She will get back to everyone at some point and is very appreciative of everyone’s show of support.  The disconnect is getting more difficult, she’s really jonesing for more contact with her friends and family.

Some of the stiffness and soreness, while improving, is taxing. It’s difficult for her to eat certain foods, she’s thinking it’s the swelling in the back of her neck that is helping create this difficulty.  Apparently we don’t realize how much we move our head forward to take a bite or lift it to drink, she is acutely aware of it.  It’s also frustrating to have to ask people to do what we normally consider simple tasks like getting a book, getting a glass of water or turning on an overhead fan but she realizes it’s short lived.

Overall she is in great spirits, we shared a few laughs and it was good to hear her voice.  They should be heading back this way on Saturday. There’s some concern about how a 200 mile car ride will feel but they are all, dogs included, ready to be in their own space.  To get tea if she wants it, to know the water isn’t in danger of being shut off because the landlord didn’t pay the bill, let the dogs run free in the back yard, get Kate back on a regular schedule, sleep in their own bed on their own sheets and all the little things in between.  I’ll be happy to know that I have the option to stop by on a whim again.

Cheers!

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Update From Amanda!

These boots are made for walking and that’s just what they’ll do.

#1 — they’re not boots.
#2 — I’m not walking.

BUT I am being wheeled out of the hospital on official discharge!

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She included a picture of her beautiful painted red toenails in wheelchair foot rests but I can’t figure out how to include it. Sorry.  But yay for being discharge!!

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