Over due update

So I failed in boggy world today.  

In all honesty you would not have wanted to read the post I typed earlier anyway.  

Life in the hospital is always hard.  It's harder still when your long anticipated release date passes you by.  And when things keep declining for unknown reasons with no end in sight it becomes a recipe for a whole lot of pessimism, worry, fear, and frusturation.

That's where I was at earlier today....and it really wasn't pretty.

When I had time to post this afternoon I was in a bad space.  Thinking the worst.  Running scenarios in my head.  Worries about infections, transfusions, or potentially returning to the OR were what filled my head....like I said, it was not pretty.

However, things have finally started to turn around for Emily...or at least we think they have.

The day started off great.  My sis in law surprised us with a visit and some much needed supplies (aka coffee creamer!!!!!  It's important..don't judge)

Emily woke saying she felt better.  Cardiology came by and said her chest X-Ray looked better.  She was able to eat a bit more and shine that Emily smile I have desperately missed.

But then she got up to go for a walk....and we ended right back where we were.  Her heart rate shot to the upper 180's, her oxygen dropped to the low 70's on 1/2 a liter.  The dizziness and the nausea returned with a vengeance.  And just like that my baby girl went back to being so incredibly sick with no answers in sight.

She was sick and frusturated...I was worried and frusturated and wanting answers.  It looked like home was such a long way off.

But it's funny how things can change so fast yet so slow in the hospital.  

After the walk we got her set up in her recliner, got ice packs because she was feeling so hot, dosed her with zofran for the nausea and norco for the pain.  But it didn't help.  After an hour we revised her with yet another norco and she slept...and that's when I had the time to write....

She went to sleep and I took a break.  I tend to answer texts, phone calls and blog only a few times a day.  A few of you had sent texts earlier and I responded then...thank you!  I so didn't need to have too much time to think at that point!!!!!  The conversations I had with you helped a lot!

When I returned I found that dr t had been in there with the np.  He knew of the troubles we have been having, and in all honesty emmi is very special to him.  I vented with my sis in law while I thought emmi was still asleep (sneaky child) and she heard it all...sigh. But I was able to reassure her.

Funny thing is though when she woke up from that hour nap after the second pain pill, she was much better.  We were able to do the same walk again without the issues we had earlier.

The np came in and told us that they think the reactions to walking are in fact pain related to the chest tube that is still in place.  They also think that the inability to hold her oxygen is due to the same.  He ordered for her Lasix to be increased and given IV.  Aimee (the NP)  said he is so sure of the reasons behind this that the plan is to hopefully remove the chest tube tomorrow and potentially release us on Friday.  We shall see....I am not holding my breath.

However it was reassuring to have some answer as to what might be causing the problem.  I know a few times in my life where I have felt so much pain that I thought I was going to pass out.  It made me dizzy and nauseous and left me in a cold sweat.   That kind of pain is excruciating and while I hate that she has felt that way so often, I will be so grateful if that is indeed the cause and she simply could not attribute that to pain.

So lots of prayers for tomorrow!!!!

On a lighter note this evening they went to change emmis chest tube dressing...when they removed I it there was something  that looked like tissue protruding.  I didn't know what the heck it was...and neither did the nurse...or even the NP..  We ended up calling the cv surgery fellow to figure it out,

Ends up it was fat.  He pulled it up, cut some off and pushed the rest back.  Emmi had her first liposuction:).  For some reason that amused the heck outta all of us so I thought I'd share ;) sorry for the TMI for the non nurses reading though;)

So we ended up on a good note tonight.  Auntie Sheila spent the whole day with us, we tried to make some rubber band bracelets (better time suck than candy crush) and she did manage to not only eat but stay awake for over 6 hours. We also face timed a bit with daddy and auntie ellen.  

For her friends that are reading...emmi can't text right now.  The brightness of the screen gives her a huge headache.  Hopefully that will improve soon but she wants you to know she is not ignoring you!!!

So I don't know if we will get the answers we seek tomorrow or not, but it does feel good to have a potential reason and hopefully a solution to the scary symptoms she has been having.  

I will update more tomorrow!!!

Love,

Amy