Day 12: A Caregiver's Perspective

Today's guest blogger:

*****

ALERT!  Guest Blogger!   (Consider yourself warned as this is my first blog entry ever.)

8/12/13

Let me introduce myself... My name is Karen Biegler and I'm Jenny's mother.  Jenny asked me to write a few words about my experience since I've been with her 24 hours a day for the last 12 days.

*****

The Hospital Stay (Wednesday, July 31st through Thursday, August 1st):  

The day of surgery was extremely stressful.  Surgery was scheduled for 5 hours.  At the four hour mark the surgeon sent a message from the OR that it would take a couple more hours.  The surgery was 7 1/2 hours when it was all over.  Jenny didn't want to wake up in Recovery.  They would not administer pain meds until she was fully awake, otherwise they risked shallow breathing per the nurse.  They called me back to Recovery thinking my voice would help bring her around.  It was gut wrenching.  She wouldn't open her eyes but tears were leaking out the side.  Eventually, she would respond with her fingers.  I would ask "can you hear me? move your pointer finger if you can hear me."   "with 10 being the worst pain you've ever had, show me with your fingers how bad your pain is now."   She got to her room about 9:30 Wednesday evening.  She was in the Neurosciences Hospital on the 6th floor with the epileptic and dementia patients.  The nurses were good at administering her meds but they didn't seem comfortable with a surgery patient.  There was a lot of blood pooled in her sinuses and when she moved the blood would pour out of her nose.  Blood was also coming out of her left ear.  At 11:00pm a resident arrived and he got the nurse and aid to change Jenny's gown.  He cleaned up the blood on her face, neck, ears, etc.  He showed me how to clean her jaw bra (I didn't make that name up). It's like an ace bandage that goes under the jaw and up over her head.  You can see the jaw bra in several of her pictures.   I'm not sure what it's made of but the blood came out of the jaw bra with ease.  He did a neuro and physical exam.  She was still groggy but she knew what day it was and where she was and her eyes followed his finger right and left and up and down.   Jenny was in a semi-private room.  Her roommate had been in the hospital since June.  At 4:00am the roommate kicked the IV out of her foot (her hand and arm veins could no longer be used for an IV) and drama ensued.  All this woke Jenny and she asked for her phone and started texting.  I took this as a good sign.  The resident returned at 5:30am and repeated the neuro and physical exam.  At 7:00am the surgical team came by.  At 8:00am Jenny was transported through the bowels of the hospital to the Dental School in the building next door.  They did her 'after' x-rays and she was seen by a different resident.  She had to remove the rubber bands from her braces, brush her teeth and put the rubber bands back on.  While brushing her teeth she became light headed and had to finish sitting in the wheel chair.  She was exhausted when she got back to her hospital bed and slept for 4 hours.  When she woke she was much better than she had been that morning.  She had to do four things to be discharged:  eat, drink, pee, and walk.  About 5:00pm we walked several times around the 6th floor.  About 6:00pm Dr. Turvey, surgeon, came by and it was decided she could be discharged.  At 7:00pm the remainder of the surgical team came by.  The discharge orders didn't come through until 9:00pm.  They wheeled her out of UNC Hospitals at 9:30pm with 5 Rx's.  The first 24 hour pharmacy was only able to fill 4 of the Rx's.  The second 24 hour pharmacy told me the manufacturer was having problems supplying the last Rx.  A call was made to the oral & maxillofacial resident on-call and he changed the Rx.  We got home at 11:30pm.  She took her meds at midnight and off to bed.  

Just a couple more notes about the hospital stay.  For lunch and dinner on Thursday I had to call a phone number and place an order for her food.  In the room was a 10-12 page menu from which to pick from.  When you call they ask the patient's name and room number.  They guarantee they will deliver the food to your room within an hour.  She was on a soft food diet and wasn't allowed to pick from the menu.   But I could.  I just had to give them my debit card number and they would deliver to the room whatever I picked from the menu.  And the prices were very reasonable.  The food was good.  The other thing I want to comment on is the technology in the patient room.  The nurse would walk into the room with Jenny's meds in her hand.  She had a wand for scanning in her other hand.  She would scan her badge, then she would scan a box on the wall that gave her the room number and which bed in the room, then she would scan the medicine bottle and then she would scan Jenny's arm band.   Then she would check the monitor that was in the room and when she was satisfied with everything on the screen she would dispense the medicine.  Now if only they could figure out how to fix those @!#% IV poles that kept going off all night long up and down the hall.  

*****

Once home she fell into a routine that included a lot of sleeping.  I was responsible for making sure she was awake to eat and take her meds at the appointed times.  She has three external incisions.  One in her hair where they harvested the bone.  One by her left ear.  And the last one is on the right side about an inch below the jaw bone.  After eating, taking her meds  and brushing her teeth it was my job to clean the incisions with a hydrogen peroxide and water mixture.  Then I applied the antibiotic ointment.  I would help her put on her jaw bra.  The bra helped to hold her face which was swelling bigger every day in the beginning and felt very heavy.  

She was able to shower after her one week post surgery appointment.  Then we started working to get all the ointment out of her hair.  Thankfully, she had gotten a hair cut a few days before surgery and had cut about half her hair off.  First I rubbed in a lot of shampoo.  It didn't do a very good job of removing the ointment.  Jenny came up with the idea of using Dawn dish washing soap.  So the next day I rubbed stands of her hair with a lot of Dawn.  It helped, but didn't get it all out.  If you look closely today you can still see a bit of ointment. 

Today she's not sleeping as much but she tires easily.  This morning we went to UNC for an appointment and when we got home she ate, took her meds and went to bed.   

*****

Hydration is a constant concern.  When her rubber bands are on a straw is about the only thing that can get between her teeth.  But she is not supposed to suck a straw.  I bought two sippy cups.  They are the kind that if knocked over they don't leak.  Each cup has two holes:  one that the child sucks and the other allows air to enter the cup.  I cut out the thin silicon that covers the first hole and inserted a 2 inch straw which fits snugly in the hole.  Jenny places the straw between her teeth, tips the cup up and water pours into her mouth.  You can see one of the sippy cups in the picture of her by the car ready to go to her doctor's appointment.

*****

Jenny and I went out last week for pedicures.  The saloon that we went to has an IPad at each chair.  So we played Solitaire while the chair massaged our backs and our feet were pampered.   

*****

Four times a day, every six hours, she takes prescription medicines.  A couple of the Rx's cause an upset stomach if not taken with food.  Nausea is a particular concern for jaw surgery patients as the rubber bands would make it very difficult to throw up if necessary.  To ensure that her medicines do not cause nausea she eats four times a day, just prior to taking her medicines.  She is not allowed to chew, therefore everything must be 'chewed' for her.  Prior to her surgery I invested in a VitaMix.

For the past 10 days this machine has easily ground through everything I've put in it.  Cooked or raw.  Hot or frozen.  On several occasions Jenny has had visitors when it was time to eat and the VitaMix easily made 3 or 4 smoothies at one time.  I had no trouble making a batch of gazpacho in the 64 oz. container.  I know this is sounding like a VitaMix commercial.  Given everything else we have to do or keep up with, I'm just thankful that blending Jenny's food isn't a frustration, rather it is sort of fun.


The first week her jaw would feel heavy and tired after just a few minutes of eating.  She had to force herself to eat.   With each day her jaw is a little stronger.  Even now, she rarely finishes all the food I blend for her.  Her doctor is watching her weight closely.  She was weighed this morning and she lost 3 pounds in the last 6 days.  That's on top of the weight she lost the first six days after surgery.   I work to make all her food nutrient dense and calorie dense.  I add almond milk instead of water/ice to smoothies to give the smoothie some additional vitamins and minerals.   Oatmeal is a great base on which to build.  One day I added peanut butter and bananas to her oatmeal.  The next day I added coconut, walnuts and chocolate to her oatmeal.

In prior posts Jenny has shared pictures of some of her meals.  She's had a lot of variety in her diet.  For at least two meals a day she eats what everyone else in the household is eating.   She's never been a picky eater which has made meal planning pretty simple.  And while we didn't try blending pizza, we did satisfy that craving by blending Baked Ziti (made with sweet Italian sausage instead of ground beef).

http://allrecipes.com/Recipe/Baked-Ziti-I


The first meal of the day, 6:00 am, is a smoothie or oatmeal or yogurt.  And the last meal of the day, midnight, is always a smoothie.  Last night we tried a new smoothie recipe.  It was a bit different than any of the other's we've tried.  Jenny's older brother, Jarrod, was here to try this one with us.  All agreed that this one is a keeper.  But it will never replace the cherry/chocolate or the blueberry cheesecake as favorites.

If you have never tried ginger before, cut the amount of ginger in half.  If you love ginger, add the entire tablespoon.  From Pinterest.

*****

I am very thankful for Jenny's surgeons.  I'm also very thankful the day of surgery is behind us.  The next several months are dedicated to recovery and after that this will become a distant memory.