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.

Saint Faustina

Today my brother Brody blessed me (with the help of Mommy and Daddy) with a holy card of Saint Sister Faustina that was given to me by my Great Aunt Mar.  Her friends traveled to Poland and brought back a relic of St. Faustina and they pray for me along with my Great Aunt.  I can't tell you how blessed I feel to have so many people who I have never met praying for me and sending me beautiful messages.  I truly feel loved.

The last few days have been really hard on me.  Mommy decided not to post yesterday because I was struggling for each breath and we were battling a persistent fever.  But...today was a whole new day.  Mommy and Daddy woke up this morning to me in my room with just a diaper on and a cold cloth on my head.  We thought it was going to be another rough day, but we were all wrong.

At exactly 11am, Mommy got a text from my nurse Ines saying "Now, temp is 97.3, after her bath.  She coughed up thick secretions and is sleeping well.  Vital signs are great :-)"  That made everyone's day and the rest of the day was more of the same.  I'm still coughing up a large amount of thick secretions, but my fever is gone and I have moments of peaceful sleeping instead of struggling to breath.  Fighter is an underestimation!

My furry brother has been by my side all day.  Hopefully not just because we fired up the humidifier again (he is obsessed with water) or the fact that the oxygen concentrator gives off he (he is also obsessed with heat), but because he loves me!

Let's hope tonight, I get to rest peacefully.  My heart rate is lower than it has been all week, so it looks like I am one tough chick who can take on any illness that is thrown at me!

Speedlight

I think Mommy is still recovering from all the Christmas festivities because said she was too tired to do a blog post with me last night!  I've had a quieter than normal few days but I think I am trying to sleep as much as I can because I am trying to fight off a fever. The last two or three days I have went from having a low grade fever to almost 102F today.   Tylenol and Motrin have been helping keep the fever down but we did have to use some cold rags today in addition to the fever reducers.

I have also been enjoying my Christmas presents.  I got lots of snuggly blankets and stuffed animals but I also got lots of new musical toys.  Daddy bought more batteries so now I have my new musical/lights mobile for my crib.  It plays all kinds of music - my favorite is lullaby's - and it even puts on a light show which my brother really enjoys!  Mommy has been figuring out how to use her new speedlight (fancy camera flash) without reading the manual....maybe she will get time for that this weekend.  For now, we will experiment.

I also got a beautiful candle angel that comes on every day at 5pm!  It is especially pretty if we turn out all the lights.  I even got a new girly crib skirt and crib sheet but Mommy just did laundry so we will take a picture of that later this week.

Hopefully my angel helps keep me strong so I can fight off this illness.  I am having labored breathing right now but still managing to stay asleep.

Merry Day after

It was another rough 1st half of the night last night (poop Daddy) and I was probably just so worn out that I slept from just about 1am until almost noon again.  I gave my nurse Joy a tough time today and was up with seizures and secretions for a while after my bath and then it happened....I had another big poop that went through my boppy and even got my sheets, blankets and mattress pad all messy.  Mommy had a huge pile of soaking and scrubbing!

I finally calmed down for a while after that and relaxed in my crib.  I woke up again with minor respiratory distress and coughed up a big glob of congestion and that seemed to relax me back to sleep.  I even got to see my great Uncle John and Aunt Marie today.  They brought me a beautiful angel that lights up at night and a snuggly reindeer.  Daddy thought he should be called Rudolf because he had a red nose, but his tag said he was named Comet, so we ripped off his tag and I named him Rudy!

My brother was playing like a maniac with all his new toys.  It has been a fun few days but now we are all tired from the excitement.

Merry Merry!

I had a pretty rough day today but we still managed to have a wonderful Christmas.  Brody was up early and I decided to sleep in since I was up pretty late last night.  Everyone had already opened their gifts and I woke up around 11 and Brody helped me open my gifts.

Thank you for all the wonderful presents!  I was up most the afternoon which made it very difficult on Mommy and Daddy to get their Christmas dinner cooked, but we got it done and everything smelled wonderful. I was still having issues after dinner so Mommy decided to give me a steam bath and Daddy lotioned me and we did my exercises together.  I calmed down for a little bit, but as soon as Daddy started my feeding I woke up and am now having high heart rate and oxygen saturation issues along with lots of seizures.  Let's hope I have a good evening.

I hope everyone got all the things on their wish list.  Merry Christmas.

Merry Christmas Eve

I had a wonderful day today.  I think I was catching up on all my lost sleep because this morning I slept till 11am and then got a nice steam bath.

Then I got all dressed in my new comfy Christmas outfit that Aunt Kris and Uncle Pat bought me and I was so worn out from my bath and my exercises that I fell asleep again.  And slept and slept and slept.

I slept through cookie making, I slept through dinner and I even slept through present opening for our Reed family secret santa gift exchange!  I am listening to my new lullaby CD now - thank you cousin Emma:-)

I am so lucky to have such amazing support around me.  I want to thank all my wonderful friends and family for everything you have done for me and my family this year.  I hope everyone has a very Merry Christmas tomorrow.  I love you all.