Cupcake

I have tried to wear the special outfit my Aunt Kathy bought me for Christmas but my fever has kept me from wearing it since it is too warm.  But today my fever was low most of the day so my nurse Tiffany got me in my pretty cupcake dress!!

I had another rough morning which included lots of medication, nebulizers and suctioning.  My heart rate was high all morning even though my fever was pretty low.  Our surprise guest arrived today too...drumroll please....it is Nana Shea!  She arrived after noon today and we got to hang out for a while.

My afternoon got better around 2pm when my heart rate started to drop back down to normal ranges and I finally fell asleep!  I slept soundly until just around now (8pm).  What a way to say hi to my nigh nurse Beth:-(  Nana Shea bought me a cute new stuffed horse to cuddle with while I sleep.  My brother came in to say goodnight while I was snuggling with my horse which was fun.

Worn Out

Mommy heard something she hadn't heard in a while from a night nurse, "It was her best nice yet"(a quote from Darlene).  Mommy thought maybe I was getting better, but when she talked to my nurse Tiffany this afternoon, she found out that I had an awful morning and it took me a long time to settle down.  My seizures seemed to really be effecting me, so she told Dr. Gien it was probably time for a medicine increase to help my seizures.  We increased my phenobarbital and versed doses.

I woke up again with seizures and respiratory distress this afternoon and two doses of the Versed seemed to help this time along with a little fever reducer.  I have now been sleeping soundly since 4pm which is a very long time for me these days.

I think my sleepiness is because I am totally worn out from this morning and afternoon!  Mommy and Daddy love to see me resting peacefully.  It is so difficult both emotionally and physically for everyone when I am having a rough time with the seizures and respirations.

My surprise guest arrives tomorrow and I can't wait to find out who it is....

I got some snuggle time with Mommy this evening.  It is often too difficult to hold me since I need lots of suctioning, medicine and attention when I'm in respiratory distress.  Mommy tried, but finally decided to put me down after about an hour of trying to get me to sleep in her arms.

Even after she laid me down in my crib, I would calm down enough for my heart rate to get below 120 and then for some reason would wake up again with seizures and a high heart rate.

My night nurse Darlene is here to take care of me now and hopefully I can fall asleep soon.  Typically it isn't until after midnight that I am able to sleep.  Mommy told me tonight that we have a surprise visitor on Thursday and I can't wait to find out who it is!

Same, not good

Today was pretty much the same as the last few days, not good.  Just after my first feeding of the morning I woke up with lots of congestion and seizures.  It took most of the morning for my nurse Joy to get me comfortable again.

My hospice nurse Lynda stopped by for her normal Monday morning visit.  It was the first time she had seen me in over a week and she said I looked relatively good but she could hear the difference in my lung sounds.  Lynda spoke with Mommy and they talked about what to expect in the coming days.  That seems to be the hardest part for everyone including myself, we just don't know what to expect.  I catch Mommy and Daddy just staring at me and they say they are trying to memorialize every moment in their heads.

I had another rough patch with lots of respiratory distress this afternoon, but a few doses of Versed and finally some morphine along with a cold rag on my head got me calm.  I am still resting comfortably now so Mommy decided to take my picture.

Snuggle time

I got to snuggle with Daddy during nap time yesterday and he helped to get me calmed down.

Then, I got to snuggle in bed last night with Mommy and she held my hand almost all night except for the short times when she had to get the blood circulating again in her arm.  I was a pretty good girl but was still fighting my fever and lots of congestion.

This morning was another rough one and I am now starting to really hate the suction machine.  I spent most of the morning coughing up congestion during and after my bath and would cough so hard my body was convulsing.  I would make my sour face every time I heard that awful suction machine turn on.

Here I am getting my daily exercises and Mommy even tossed in an Albuterol nebulizer treatment to try and help ease my labored breathing.  I was able to sleep and relax this afternoon probably because I was so worn out from this morning.

Mommy put my new sheet on my bed from Nana Reed.  So far every time Mommy has put the new sheet on my bed, I have a big poop that day and we have to wash the sheet so she hasn't been able to get a picture.  It has been on my bed for one day now so we set a record!

My nurse Heather is here to take care of me tonight so Mommy and Daddy can get a good night sleep.  We could all use a good night sleep tonight.

Results

There has been a lot of discussion and heartache going on in the Shea house the last few days.  Mommy and Daddy spoke with the doctor on Thursday night and the results from my blood work surprised us all. We were expecting results to show that my liver was failing but results were just the opposite and mostly everything came back in the normal range.

The one thing we held off on sharing in Thursday's post was that my chest x-ray showed that I now have pneumonia.  The fever I have been fighting the last few weeks is not getting better and now we know why.  Doctors prepared Mommy and Daddy a long time ago with the fact that aspiration pneumonic was not just a possibility, but a very probable infection that would eventually take me from them.  I've fought colds, the flu and other infections, but this is most likely one that I will not be able to fight off.  Dr. Gien was surprised that I was maintaining my oxygen levels and we were able to manage my fever so well given what he saw on the x-ray.

I seem much more sleepy to Mommy and Daddy the last week or so and appear a bit weaker when it comes to coughing up congestion.  Right now I am resting comfortably with Mommy and getting some food in my tummy to give Daddy a break since he stayed up with me last night.

Here is a video Mommy took of me sleeping with my Polar bear Nana Shea got me for Christmas.  And, yes, that is snoring you will hear....

Breaking the law, part 2

It was a busy day today.  I had a rough morning with my nurse Tiffany and then Mommy and Daddy came home to take me to see Dr. Gien.  He checked me out and then it was off to Radiology for an x-ray. We met back with Dr. Gien and updated some of my medications and then it was off to get some blood drawn for tests.  We left for the hospital around 1:30 and didn't get into the car to go home until almost 4pm!  Needless to say I was exhausted and fell asleep in my Mommy's arms on the car ride home...and yes you heard right, in my Mommy's arms.  I don't do well sitting up so Daddy drives super careful and I get to snuggle in the back with Mommy.  All rules are out the window when it comes to my comfort:-)

We are waiting tonight to talk to the Dr. to discuss my test results.

Four of a kind

Check out these numbers:

Hopefully most of you do not know what these numbers mean, so I will explain.  The numbers on the left are my oxygen concentration (%).  Obviously, 100% is the best,  so 99% is pretty darn good with the help of my supplemental oxygen.  The number on the right is my heart rate.  99 is pretty good considering this past week I was at 170 for at least a few hours.  

These number have been rare this week and even this morning, so Mommy and Daddy were glad to see this when they got home this evening.  We will probably make a trip to see the doctor tomorrow and run a couple tests to see if we can identify the source of my fever.  My hospice nurse Ann was also a little concerned with my liver and stool so we will run those numbers too.  

Evil

Fevers are evil to me.  I am still struggling with a high fever.  It seems to attack for a while and then it will subside.  I always seem to be on my best behavior for my nurse Joy and I have been even been giving her a hard time the last two days.  I had a brief moment of calm awake time today and got to spend it with my big brother Brody!

I am back to having difficulty with my secretions and trying to fight off my fever.  I am hoping to get some rest tonight.

Happy New Year

It was a typical day here in the Shea house instead of a new year celebration.  There wer syringes full a medicine, lots of nebulizer treatments and worrying instead of top hats, noise makers and champagne.  The holidays seem particularly difficult for all of us.  This should be about the time I am starting to walk but I can't even hold my head up or any of my limbs.   The only time I move at all is when I am having a seizure.  Life doesn't seem fair, but it is my life and I have my Mommy, Daddy and Brody to help me through this journey.  The unknown is the hardest part so we are all thankful for the time I have shared with everyone in 2011.  We are wishing 2012 is a peaceful new year.

I have been fighting a fever and we thought the fight was over but boy were we wrong.   I had a very hard few days and my fever was back in full force today.  My heart rate has been sky high because of the fever and my oxygen has been all over the map.  I am resting peacefully now facing the sunshine.  It is too cold for me to go outside but I am able to enjoy the view from my warm crib.