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Archive for September, 2008

30 September 2008

Oh my, it is so hard to see Brynlee suffer so.  I spend yesterday with Jen by Brynlee’s bedside.  When I arrived she was sleeping and had been for many hours.  She was asleep but not peaceful.  Her little body is so ravaged that she shakes and murmurs almost constantly.  She has been there since last Wednesday evening.  That’s 5 days and they still hadn’t diagnosed what was bringing on such high temperatures.  Many tests, x-rays, etc. later they told Jen that lab tests showed she had C-dis-B.  It’s a bacteria in her colon….something healthy people normally fight off easily but with Brynlee’s compromized immune system it is not good.  They started another, different anti-biotic yesterday afternoon and finally did a CT scan late yesterday that confirmed the diagnosis.  Jeff came to replace/relieve Jen and we both went home.  Jen called later to tell me that Jeff called her to say that Brynlee’s temperature was “almost normal” for the first time in almost a week.  YIPPPEEEE!  Finally!

I’m hoping that they can postpone Brynlee’s scheduled chemo treatments that are supposed to start next week, but we’ll see.  I know that the sooner she finishes them the sooner she can begin the final healing process, but her little body is so compromized that I want her to be able to rest.  I’m not the doctor, so we’ll see what they feel is best.  We are all hoping that she is well enough to come home tonight or at least tomorrow morning.

The nurses “welcome sign” for Brynlee.  It’s an oxie moron.

A shot of Brynlee in the stroller waiting to go for a walk.  We had conflicting information about taking her out of the room where she has been quarantined.  Some said take her, others said NO.  But, while we were out getting the CT scan, we took the long way back to the room and took her outside to watch a waterfall.  She fell asleep sitting there.

I took this standing with my back against the door in the corner to show how small the rooms are here.  The “bed” on the other side of the room is where Jen and Jeff “sleep”.

Close up of the “bed” where Jen and Jeff “sleep”.  Kade is in his carseat sleeping.  His “moses basket” is on the other side of the “bed” against the wall.

The IV pole that Brynlee is constantly attached to.  Check out the number of monitors and bags of “stuff”….at least one was missing when I took this picture.

I could only take pictures when Brynlee was asleep.  Notice the “funnel” near her.  It’s blowing oxygen toward her because she is not getting enough oxygen normally.  There is another “funnel” on her other side so that when she tosses

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Pictures

This is Brynlee at home before her last trip to PCMC

 

Mom, Kade and Brynlee “hanging out” at PCMC

 

September 22, 2008 Brynlee was getting some tests done at PCMC as an outpatient

 

When Brynlee is an out patient, she plays with a volunteer while she waits her “turn” at the tests.

 

Brynlee always rides in wagons at PCMC…that’s the way they “move” them around.  Here you can see the head band made a donated by a Young Womens Group somewhere in Salt Lake City.

 

Jen and Jeff found another, different playroom on another floor in PCMC.  Here’s Brynlee playing on her last trip to PCMC.  That was a scheduled trip for chemo…not like the trip now where she’s being treated for “reactions” to the chemo.

Brynlee at one of the many displays around PCMC.  This one even has a train that goes around.  Thank Heaven for PCMC and the way they cater to children.

Brynlee CALMLY getting her CAT scan.  Most of us would need to be sedated, but not Brynlee.  She does exactly what the doctors tell her to do…..We love you Brynlee!

 

Our precious trooper

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28 September 2008

Our dear little Brynlee is having a hard time at PCMC.  We are so glad we have and live near PCMC.  Without it, things would be much worse.  Since Brynlee has been there this trip, she has only had a normal temperature twice.  She is on her third different antibiotic and they are presently giving her a transfusion again.  To say she is miserable is an understatement but all in all she is still our little trooper. It’s amazing what she takes and handles so well.  I can say the same for Jen and Jeff.  There absolutely must be an amazing amount of help from beyond the veil and we are all so thankful.  Keep remember Brynlee and the whole family in your prayers.

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26 September 2008

Brynlee had a rough night.  She kept throwing up and just felt miserable.  Jen got her and herself settled down and then Brynlee needed to go “potty”.  When Jen got her up, she was soaked and Jen thought she’d wet through everything.  Nope, her nutrition IV had come off and was broken.  So, it took an hour to fix the IV, get her bed changed and get settled down again.  Then another alarm started to sound…the one on her finger that moniters her heart and breathing, etc while she’s on morphine and sleeping.  Jen called for the nurse but a whole team appeared and began working on Brynlee with additional monitors, etc.  Seems her heart and breathing were way too fast and they proceeded to help her return to normal.  They even blew oxygen into her face which she did not like…..do you blame her?  Finally, the morphine took over and she didn’t much care anymore.  Brynlee got settled down and the Kade woke up to be fed.  I told Jen to sleep as much today as possible.

Jen has been fighting a UTI and called her doctor yesterday.  It was his day off and the nurse who knows Jen and her situation right now was also out for the day.  The office refused to call in a perscription for Jen unless she came in for an appointment…….even though she was at PCMC…sigh.  Anyway, Jen toughed it out with some otc meds until late yesterday when her back stared to hurt.  Kidneys are nothing to be messed with so Jen found an urgent care near PCMC, called them to see how backed up they were and finally got some help.  They got her in and out in 15 minutes with a perscription.  Her Doctor’s nurse called her this morning at PCMC to order her a perscription and apologized over and over when she learned that Jen had to leave Brynlee to go to the urgent care.

Jeff went home to care for the other children and to finish up the Pine Wood Derby cars….the race is tonight.  Hopefully, Jen and Brynlee (and Kade) will rest today.  Bill and I will return home to Utah and our own computer tomorrow and I promise to add the pictures Jen sent to me.

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25 September 2008

Our sweet Brynlee is back at PCMC as of last night.  Just like last time, she started feeling really crummy and then spiked a fever of 100.7.  The doctor said, “Bring her in”.  So, Jeff took her to PCMC and they admitted her right to her “home floor” and started the antibiotics and some nutrition, etc.  Jen is sad she couldn’t go with, but she knows and is grateful that Brynlee is where they can make her more comfortable and get her well again.  Jen will go to PCMC when Amber, Jen’s sister, gets to their home in Eagle Mt.  Amber will care for the other children and Jen will go to relieve Jeff at PCMC.  The older boys have a Pine Wood Derby race Friday night and their cars are not finished yet….so Dad to the rescue.  He’ll help them finish the cars and take them to the Derby while Jen, Kade and Brynlee work through Brynlee’s problems at PCMC.  Jen told me she sent pictures for me to add to the blog…I’ll do it as soon as I return home from California.

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23 September 2008

Hello from San Diego…Brynlee’s Grandpa (aka Bill) and I are here for Bill’s mother’s funeral.  But, we have to keep everyone updated on Brynlee.  Yesterday Jen took Brynlee to PCMC as an out patient.  Brynlee got her spinal tap in a little different procedure that seemed to work well and gave her less side effects.  (I once told Jen that we could take the diagnosis if the side effects weren’t so devastating.)  They also gave her a “once in 3 months” shot, aka poke, that should help her body build more white cells.  The doctor looked at her mouth, heard what she had been eating and LET THEM GO HOME….YIPPEE!

However, he predicted that they might be back in a couple of days.  Those mouth sores are horrible.  I can’t even….don’t even want to….imagine having that side effect.  Keep Brynlee in your prayers and remember to be thankful for the progress these treatments are making in Brynlee’s progress.  If we can keep her well, she can be finished with the planned treatments by Halloween.

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21 September 2008

Brynlee with Mom, Dad and Kade arrived home last night, Saturday, around 9:00p.m. from a week’s worth of chemo treatments at PCMC.  Grandpa and I were there to meet them.  Brynlee is so darn cute.  As soon as she saw me she ran with a giant smile to give me a big hug.  She just makes my heart melt.  Last night she was pretty normal except that she asked for a freshly baked chocolate chip cookie, took one nibble and didn’t want it.  Poor thing, chemo makes everything taste like dirt…so I’m told…and the mouth sores that inevitably come with each treatment were already causing pain. 

Today, Sunday, hasn’t been much better for her.  She hasn’t eaten enough to be able to stay at home without intravenous nutrition.  If she can’t start eating at least 5 cups of nutrition each day, it will be back to PCMC to get nutrition through her central line. 

Tomorrow, Monday, Brynlee goes back as an out patient to PCMC for a spinal tap and a shot that will last her 3 months and help her body produce white blood cells better.  Tonight, Jen voiced a concern that they might want to keep them at PCMC if they feel that she’s not eating enough.  We’ll all keep them in our prayers and hope that Brynlee will start to eat enough very soon.

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