Monday, June 30, 2014

last day in hospital and going home

As mentioned in the last post…she had some labs drawn around 545am our last morning (last Wednesday).  They drew a CBC, CRP, ESR, and strep antibody tests.

We had rounds around 9:00.  We found out the CBC was normal.  The CRP (which is an inflammatory marker) was down from 4.92, initially, to .92 (still slightly elevated with normal being less than 0.1, but trending down).  ESR was up a little, but they predicted this as these levels tend to rise and fall at a slower rate.

Strep antibody results were pending, as they would not be in for a few days.  And these are the ones we are actually still waiting for and will hopefully unlock a lot of knowledge either way about what all was actually going on with her elbow and fever, etc.

They said they'd send us home on antibiotics (prescribed for 30 days as of now) and naproxen (a strong anti-inflammatory drug, to be taken for 14 days to decrease inflammation).  Discharged with the diagnosis of post-streptococcal reactive arthritis, pending strep antibody blood results.  There is still a slight chance it was an infection of kingella, but just looking more and more unlikely (will get the PCR back from elbow fluid in a few weeks that would tell us this information).  

I really appreciated the ortho attending's honestly with me through out this whole process.  He mentioned that they know a lot…but they do not know everything.  He said there was still a possibility it could have been a virus that settled in her elbow….this is very rare and he's only seen it, when it does happen, in hips and knee joints…never an elbow.  But after 17 years of practice…he sees something new almost everyday, so this could be it.

We will follow-up with him in his clinic on Thursday this week where we will hopefully have more answers (due to lab results).

Grace was feeling a lot better on this last morning.  This was the first time she requested to get out of bed and was not interested in watching TV (although, I have to say, I was very thankful that she was entertained well by shows and movies…because both of her hands were pretty much out of commission).  It took them about 3 hours before they got the orders put in (they had to round on the rest of the unit first)….but we couldn't really hang out in the room much longer!

So we visited the play room.  She had so much fun playing 'kitchen' with me.  And it was so good to see her in such good spirits.  She was still not really using her left arm…but still….I could see so much improvement.

Out of the room!


In the playroom...


We probably spent 30-45 minutes in the playroom…then ventured outside.  It wasn't too hot…a little overcast and before the rains.  She really enjoyed her time outside.


We also picked up some popcorn along the way...


Being silly!


We were maybe outside 20 or 30 minutes when she was ready to come in.  We picked up lunch for me in the little cafeteria and headed back up to the room.  By the time we got to the floor it was pouring down rain, and she requested that we sit there while I ate.  Just looking out the window (her room did have 2 windows…but our only view was the building we were in…we were tucked into a little corner, I guess).

After I ate- we went back to her room, I ordered her lunch, and she watched a show while we waited for it to be delivered.  By the time she was done eating…the nurse came in letting us know everything was ready to go…BUT….she called the pharmacy to make sure her meds were ready for us to pick up and they were not.  And that one of her meds had to actually be compounded in their pharmacy and the person who does the compounding was gone to lunch.  Of course!  The deal is…the meds she is taking are not always readily available in regular pharmacies…and I'm glad they warned me because I would not have wanted to have to drive back out for the meds.

So we ended up taking most of our stuff out to the car and walked around.  Went back to the room…and around 2:30 the nurse came into her room and told us the medications were ready.  So we headed to the pharmacy…but up the medicine…(30 days of antibiotics and 2 weeks of anti-inflammatory)….


...and headed to the car.

Where I found this.  Really???


Long story short…my dad ended up coming out and airing up the tire (it had a nail in it)…and we were on our way home.  She sat watching the iPad and playing games for 1 hour while we waited to get on the road…and she never complained once.


On the way home I was pretty emotional on and off.  Just starting to really process it all.  And worried how we would get back into our routine once home. 

Grace had my phone so she could pick which songs we listened to.  I guess she snapped this photo of me.


My sister had dinner ready and waiting for us (brisket sandwiches with chips and ranch dip, and chocolate chip cookies for dessert.…and also brought Grace this Anna & Elsa tervis cup filled with starburst and with a balloon attached.


Parker had gotten her roses.



And not long after being home…they were playing.  Good for my heart.  And theirs, too.


She had been sleeping in my bed with me since the night before she went to the hospital…and when we got home…I just wasn't quite ready to let her sleep in her room (also- I think she was still in some pain…and I figured we'd just all get more sleep this way).


The next day (and really even the night we got home)…I was in a funk…didn't know where to start being back home.  Everything going on with Grace completely had consumed my thoughts.  I did briefly think of Parker and Nolan…but knew that they would be taken care of and ok.

When I came home I sort of had a meltdown at how there was just 'stuff' everywhere.  My mom had had the house cleaned…but while I'm going through a stage of cleaning out and getting rid of things (this 'stage' had started before Grace got sick)…stuff was everywhere.  Geoff had worked hard to put all of the laundry away and have things picked up…but with kids, as you know….it rarely looks 'picked up'.  

I felt like life time stood still while we were in the hospital…yet I got home and made the obvious realization that life had, in fact, moved on.  But i had no idea what had gone on.  Parker hadn't even eat enfruit in a week.  Nolan, of course, remembered me…but was sort of 'upset' with me and didn't have much to do with me.  He sort of just walked around that whole first evening just whining and couldn't be consoled.  I longed for the days just the week before when we were all home and sitting on the floor together and didn't have the experience and knowledge of all that the last few days had held.

I was tired.  And still trying to process all that had happened.  I would find myself crying just thinking about it all.  Something I didn't really do but a few times while she was in the hospital.  Such a strange feeling going through all of this….and I learned so much about myself and times of urgency.  You see…while we were there and living it…it was complete survival mode….you do what you have to do without complaint and move on with it.  I just rolled with the punches, so to speak.

But being home… I was able to 'breathe'….and then it all just sort of starts to sink in.

Time has been good medicine for myself.  Each day I feel like things have been better….more 'back to normal'…whatever that all means.  The thing is…there's still a lot we don't know…but leaving last week…in some ways…our lives are forever changed.  Sure- these experiences won't always be so fresh on my mind…so consuming.  But now those memories are a part of our history.

Me and this guy are 'back to normal.'




A week ago today… she was in pain…sick…and just coming out of surgery.  Recovering.
Today she was playing on the playground.


If you've stuck around for the duration of this looooong story…..Thank you.
While this is written down for Grace to read one day…it's been very therapeutic for myself.  


2 comments:

Viv said...

Thank you for sharing all of this sweet girl. Really do think that all of your feelings were totally normal! You know what Kelly Clarkson says in her song'what doesn't kill us makes us stronger'. I think that's really a good analogy for any parent! Prayers and thoughts always to you!

The Pharrs said...

Grace seems very strong and resilient! :) While reading this post, my heart went out to you and your family, my sweet friend. I am glad everything is getting back to 'normal'.

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