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.  


day 2 in the hospital

We had a little more restful night our second night in the hospital.  We got to bed around 9:30…she had IV antibiotics and vitals due around 1am ,and she went right back to sleep when all was done.  We were up for good around 7am because she had her IV antibiotic due again, and once she was up this time…she was up.

Hospital coffee.  Not the best, but thankful for it.

So here's the deal….around 8:00-8:30 doctors came in for their assessments.
Around 8:45 the nurse came to get us for rounds.  Grace was in a lot less pain this time, so no wheel chair…but I did have to carry her (which- she did have the drain that dangled when she walked, so I understood).

I'm just going to blurt this all out and hope it makes sense!
So….just to quickly recap:
-On Friday night we thought Grace hurt her arm rough housing.  She was crying but we thought she was ok.
-She was up on and off all night…so around 5am Satruday morning…I took her to ER.
-In ER- had X-rays…diagnosed with elbow sprain (nursemaid's elbow)…arm was 'reset'.  Sent home with splint and told to take ibuprofen.  Her pain should have been better after being 'reset'…so if not better by Monday- go see our regular pediatrician.
-Sunday night at 4am she wakes up in pain.  Asks for ice pack for arm.  I feel her and she's warm…and has 103.7 fever.  Give ibuprofen.
-Wakes up around 9:15am with fever (102.5)….and nauseous.  Throws up at 9:25.  Then feels better and eats whole can of soup and drinks a thermos of water and keeps it all down.
-Never gets below a fever of 100.5.  Lays around all day.
-4:30 pm wakes up from 30 minute nap with 104.1 fever.  Give ibuprofen and shower and get fever down to 102.1.  
-Call advise nurse.  Advice nurse suggests we come back to ER.
-Labs drawn and indicate infection.  That- coupled with the fact that she cannot move her arm…they suspect osteomyeltis or septic arthritis of elbow. She's admitted.
-Monday morning - MRI….fluid seen around elbow joint during MRI so straight to OR for surgery to drain and clean out joint and leave drain in.

**The ortho attending also believes at this point that she never had a sprained elbow/nursemaid's elbow…just the infection that caused the pain and made us think that something had happened.**

(I know I said quick, but you know me).

SO…..come Tuesday morning we have a little more information.  The CBC of the fluid drained from her elbow was basically normal.  In a septic joint….they would have suspected it to be more 'florid"….meaning very high in white blood cells (since these are the cells that are sent by the body to fight infection).  But the results actually showed a normal white blood count.  Thus making them think maybe not infection.

IF infection…they said it could be 1 of 2 different bacterias (usually): staph or kingella.  IF kingella….(which is more rare, but possible)….then we might would see a low blood count like what we were seeing with her.  So this is still a possibility, but we won't know this for sure until we get the PCR results back in a couple of weeks.

But now…
Now they are actually thinking something completely different.  And where it gets a little more complicated.
Post-streptococcal reactive arthritis.

I'm not even sure what exactly that means so I won't sit here and try to write it all out until I know more.
What I do know:
-She's never been to the doctor for being sick before this ordeal.
-She has never had a strep infection that I know if, but that doesn't mean that she didn't have one at some point.
-They drew tests looking for strep antibodies and should have these back sometime this week.  IF she is positive for this antibody then this scenario is more likely what happened last week.
-IF this is true…she is at risk for rheumatic fever…and ultimately rheumatic carditis.
-IF this is true- we will see a rheumatologist and have a cardiac screening for possible damage to her heart.
-IF this is true….I'm not exactly sure what it means.

Because, clinically, she no longer appeared to have septic arthritis…and because she was getting better (in less pain and moving her arm)…they said that we would more than likely be able to go home the next day (Wednesdasy) instead of the 4 or 5 days later, as thought initially.  I had originally planned to go home on this day and spend the whole afternoon with Parker and Nolan…..but since she was going home the next day, I didn't want to leave her.  Instead- my mom and sister watched Nolan…and Geoff and Parker came to visit.  (Parker had been handling everything ok…but she was pretty worried for her sister when hearing words like 'surgery'…and so we thought it was important for her to come and see her.


Her hair was a mess!!  Seriously so many knots and tangles….I thought I'd never be able to get them out!  I ended up putting on this really neat little no-rinse shower cap that I heated in the microwave…then placed on her head…and massaged it around.  It's not the same as a real shower, but it did the trick and I was able to get all the tangles out after about 20 minutes.


Sister came and it was good for both of their souls!  At this point…she was starting to be in a little more pain.  I think her drain had started coming out at this point…and that was an ordeal.  Ortho didn't think it could cause her pain and blablabla….well….she had some pain meds and was ok so when they said they just wanted to wait to take out until the next morning (even though it wasn't even draining anything new since surgery!) I didn't push for them to take it out (wish I would have, though…as Momma's….we know!)

Anyways….it was Child Life's 40th anniversary of being at this hospital and so they were having a little birthday party down in the lobby.  It was good to get us out of the room.  And Parker loved pushing her sister around.

They had various craft stations set up…she made this X-ray of her hand, the 'magic wand', and the shaker.



They also had a table of gifts set up (NICE gifts)…and both girls were able to pick one out.  This whole experience was very  humbling.  I can't tell you how many times I teared up while at the 'birthday party'.  I mean…we're in a hospital full of sick children…some terminally ill….some not.  But to look around and see them…and to look down and see your child….and to think that, sure…my child is here, but she's going to leave soon…and maybe some of the other children weren't.  It makes you feel thankful.  But then sad.  Knowing that those other mothers and fathers are hurting seeing their child hurt….and wanting to do any and everything to make that go away.  But can't.  And then realizing…that maybe in that moment…you're just like them.  And accepting gifts that people have donated for your sick child to be able to have on a day that just isn't so great for them.  Well it's humbling.

We visited the trains...


This little doll that she picked out while at the 'birthday party'…well it made her day.  Her dolly and blankie got the boot for the rest of the day until bedtime.


I had to take a picture of this.  Because besides the chicken noodle soup and vanilla shakes….her meal of choice was a sandwich (cheeseburger with lettuce, tomato, onion, and pickle), tater tots, strawberries, and vanilla shake.  She only had something different than the 2 meals listed above one time, and that was for breakfast our last day, and she had a hardboiled egg, bacon, and strawberries.


After the pain medicine kicked in she was a little giggly/bouncing off the walls….and as I was trying to feed her (since both of her hands were out of commission)…she kept putting her feet on me.  We got to giggling and I wanted to take a picture of me with her since it was mostly just us 2 for all these days and she would not have it….but instead…I settled on a selfie with her foot.  Which she loved.  And hearing that giggle…was the best.


By this evening…she had watched Frozen, Brave, Despicable Me, and Cloudy with a Chance of Meatballs each several times on their TV network, and wanted to watch something on the iPad.  So we set it up and made it work.



Close to 7pm…that little drainage compartment lost suction.  So finally….they got someone to come and take it out.  And wouldn't you know…it was already all the way out!  So I was thankful that they finally 'took it out' because it made getting up and going to the restroom so much easier!

We finally got settled and in bed around 9:15.
And as we were laying in the darkened room, Grace says to me,
"Momma... thank you for all this.  I will never forget it."
Talk about lump in my throat and tears in my eyes.  Precious girl.

This night we had an even more restful night than the night before.  She had and IV antibiotic due at 1am and didn't even wake up.  However- she woke up on her own around 5:30am….and started saying,
"Momma!  Momma!" 
Me: "What baby?"
Her:  I was looking for my dolly and I moved my arm and it doesn't hurt anymore!

She also had a blood draw due, and they came in and started trying around 5:45.  And she pretty much never went to sleep after that.

I guess I'll make one more blog post about her last 'day' in the hospital…the day we came home!

Saturday, June 28, 2014

today.

I still have another post I will eventually (hopefully tomorrow) write about Grace's last days in the hospital….but I've sort of been in a funk since getting home.  Geoff worked today- and while it would have been easy to stay in my t-shirt and stretchy pants…I decided to throw on some clothes that didn't have an elastic waste band, put on a little make-up for the first time in over a week…and take my brood to Wal-Mart.  And if they were good- a sno-cone surprise afterwards.

But before Nolan woke up from his morning nap…I got up in the attic and got down this desk that my papaw had made me when I was little.  The girls have started to really get into playing 'school' and I thought they might like it.  And they love it.  I just wish I had 2!
**SO funny!  I just wanted to take a couple pictures of the girls playing and I didn't ask them to look at me or smile…but Nolan saw me with with the camera and decide to 'cheese!" all on his own.  Haha!  Love him!**






Turns out….they were so good at Wal-Mart with no whining or asking over and over for different things….and so I surprised them with a sno-cone.  


I didn't get one for Nolan…but he had lots of fun playing with the dirt and mulch.  (And Parker also shared some of hers with him when she was done.)


While in the Wal-Mart check out line (I chose the wrong one!)…there's this little side aisle with all of this "As Seen on TV" stuff…and the girls saw this "Hot Huez" hair color (it's just chalk…and while messy…not what I thought it was and would do again)…and I was a pushover and got it for them.  It was fun and made their day, I think.


Just trying to get back into the swing of things…I thought I'd make dinner…and even dessert.  After his afternoon nap- Nolan was being a little extra clingy and needed me to hold him…so I did.  And without complaint on my part.  I just embraced it.  Embraced this season of him needing/wanting me to hold him.  Of the girls playing loudly together making circles through the kitchen, living room, and dining room with their Little Tike cars and screaming and laughing one minute.  And crying the next.  These are the days.


The girls helped make the brownies.




Dinner!  Stuffed bell peppers.  They were actually pretty good!


While at Wal-Mart….I got the girls a dry-erase board to hang on the wall in their room.  There's this corner in there now that needs to be filled/decorated since I did some rearranging- and I was going to make it a 'dress-up' corner, thinking that if I brought out their dress-up clothes into plain view then they'd maybe play with them more.  But what they are into…is playing school (as mentioned earlier)….so now I'm going to make that corner their classroom.  It's like…how are we already past the dress-up/play house/play kitchen stage?  I mean…not completely, but those days are numbered.  And I can't believe it.  I digress…..  Anyways……Parker put this on the board….

And I'd have to agree.  
I love my family, too.

Thursday, June 26, 2014

our return to the hospital


In case you're just tuning in…the first part of this story is found here.

So after I got off of the phone with the pediatric advice nurse…I called my mom, and she and Terry came over within the next 15 minutes.  I got ready and put a few things in my bag, thinking that I would probably not be returning home that night.  Terry ended up staying with Parker and Nolan…and my mom went to the hospital with us.

We got to the hospital and got checked in fairly quickly and they called us right back (since they already knew we were coming).  This time we were in our own room in the ER (rather than a shared room that was basically a room that people walked through to get from one place to another that we were in the first time).

The attending that we had seen the first time was also there on this evening.  Again- I was not initially impressed with him…and neither was Grace.  When he walked into the room, she immediately began tearing up.  I told him everything that had happened since we left.  I expressed to him my concern about her pain and how I wanted her to have pain medicine….and how I wanted them to show her the smiley-face pain scale and to not be asked how her 'pain' is on a scale of 1 to 10.  She understands how she hurts…not how she is in 'pain.'  He agreed, got the nurse in there…she pointed to the crying sad face…and they eventually ordered her some IV morphine.

So at this point…they decided to draw some blood to look at inflammatory markers, a CBC, and culture.  Since they were taking blood- they went ahead and started the IV.  The nurse that came in to start the IV was wonderful and she got it right away.  Grace didn't even cry!  She was doing so good and was seriously- so brave.  They gave her some morphine-which I think helped calm her a little (she still did NOT want anyone coming near her arm!).  As we waited for the results and to make a decision on what to do next…she requested to watch Toy Story 3 on the iPad.


The doctor eventually came back in and said that her CBC was normal…but that her inflammatory markers were moderately elevated--CRP (C-reactive protein) was 4.92 and normal is less than 0.1.  Her ESR (erythrocyte sedimentation rate) was also slightly elevated, but not as markedly since this marker tends to trend up more slowly with infection.  So from here…they ordered an orthopedic consult.

So the ortho doctor comes in shortly after…sort of looks at her arm (which was slightly swollen, but not really red and warm), but she won't move it or let him touch it.  So…they ultimately decide to get another set of x-rays just to make sure everything is still looking ok (since the first set of x-rays was before they 'reset' her arm the previous morning)….and they wanted to admit her.  They decided not to start antibiotics or work her up yet, but to make her NPO (nothing by mouth) after 2am…give her some pain meds…and then see how she was doing the next morning.  If her arm was still hurting and she was not moving it…they were probably going to do an MRI, which would require sedation and intubation because of her age and them needing her to be still.

We finally got all admitted and settled into her room around 1215am.  It didn't take very long for her to fall asleep.  
This picture.  
She's such a beautiful little girl.  And I can see just how tired and worn out ..and just not well...she is in this picture.  
Bless her heart.

I laid in bed (READ: on the pull-out couch bed that wasn't even long enough for my body to fit without hanging off) awake for a little while.  I wanted to pray.  But I had no words.  I just asked the Holy Spirit to intercede…for God to know my thoughts and know what prayers were and needed to be.

As I woke up about every hour in the night…I began to find some words to pray…
"Lord, please just watch over her and heal her body"
"Please give the doctors, nurses, Geoff and me the wisdom to know the best things to do for her."
"Lord, she is yours.  I know I have no control over this.  Help me to lean on you.  Trust you."


I was up a little before the doctors came in to assess her and I read my Jesus Calling devotional for the day.


Pictured: her first IV…and how she cradled her left, hurt arm and held it in place with her other hand.  Reflecting back to everything leading up to this….she really and truly had been in SO much pain.
And because she's 4….and because it was 'supposed' to have been better after they 'reset' it…and because she didn't want anyone to even touch her arm….I'm not sure how much everyone believed the extent of her pain.  But I did.  And it was a lot.


So on this morning…I met the orthopedic attending.  From the first time we met, I had a good feeling about him.  He appeared to be very knowledgeable and thorough…answered most of my questions before I even had to ask.  And if I did have to ask a question- he did not make me feel stupid for asking.  Things that I like!  He came into the room…sort of examined her arm (because she would NOT let them touch it)…and told me that because of her elevated inflammatory markers, history of fever, slight swelling, and the fact that she will not let anyone near her arm…he felt like she did need an MRI.  He said that they would be doing rounds with the ortho team and the general pedi team, along with bedside RN, (and a few others I can't think of now!) and that I would be included and my nurse would come and get me when they were ready….and that we would discuss everything that was going on.  Loved this!  I'm familiar with rounding because that's what we do in the NNICU that I work in…but I love that they include the parents here (it's actually a new thing that this ortho team is doing and the Joint Commission is even coming to evaluate this next month, and they are hoping to start doing this more throughout the hospital, so that's pretty neat).

At this point- she had not had any pain medication since midnight.  Various doctors had come in to examine her…moved her arm…and even without movement she was just in a lot of pain.  I had requested pain medication and the nurse brought in an oral med.  A gross-tasting oral med that Grace would always follow with a half of an apple juice box.  And since she was NPO…I was a little confused as to why they couldn't just give her something a little better, and more fast-acting, through her IV?  She said that was all that she had ordered and if that was ok.  To which I said no.  So the nurse asked and they ordered her something…which I was happy about…only it had to be brought up from pharmacy which took a long time.  On one hand…I feel bad that I didn't just let them give her the po med (even though she was NPO???) because I know she was in so much pain…but then I think it would have been mean to make her take it and then not even be able to wash it down.  And she was already crying and just miserable.  This was a 'known med' that was NOT a good tasting med.  Anyways….just one of the many, many decisions I made that I play over and over and doubt myself and go back and forth.

Moving on….
So we go into rounds (they got me a wheel chair so she could go with me because there was no way I was leaving her in her room alone!)…she was pretty much moaning and crying almost the whole time.  So the ortho attending went over everything again in more detail.  He showed me the inflammatory marker results, the CBC results, the X-rays and how he suspected that there was fluid around the elbow joint, and that he suspected that she possibly had septic arthritis (inflammation of the joint) in her elbow.  The team wanted to get an MRI because this would confirm or deny the suspicion that there was fluid in the elbow.  And if fluid was present- she would need surgery.  The ortho doctor would be there during the MRI, looking at the pictures as they came out…and upon the completion of the test..the team would make the decision on whether or not she would need surgery to go in and drain the fluid, clean out the joint, and place a drain that would stay in for 2 days.  And because she would already be under sedation and with a protected airway…what would happen is- the doctor would come out and tell me what they found in the MRI and if they thought she needed surgery.  If she needed surgery- they would take her straight from the MRI directly up to the OR.  And IF it was osteomyelitis (infection in bone) or septic arthritis….we were looking at 6-7 days of hospitalization for IV antibiotics.

Wow.  Surgery.

The morning was a whirlwind because I saw the doctors asses her in the room from around 8:00-8:15 (there were several)…then it was straight to rounds…and then right when we walked out of the rounding room- transport was there to take her to the MRI.  As we were standing at the HUC station…Grace in her wheel chair scared and crying because her arm was hurting…I signed surgery and blood consent so that it wouldn't slow the process down if they decided she needed the surgery (they did not think that she needed blood, but if she did, then they would have the consent already).  

She was still crying and pharmacy had not brought the pain medications up…and so they told us when we got down to radiology that they would give her something there.  I am an emotional mess at this point, but holding it all in.  And so with all that I CANNOT control…I shift my focus to the one thing I think I can control…and that's her pain…and at this point I am very frustrated that she has not gotten anything yet.

And in this rush of a moment I look up and see a familiar face.  A resident that I met at work and that I DID like!  We actually sort of became friends (not that we still keep in touch, but when her rotation was over she had come to find me and hugged me and told me bye)…and so seeing her face made me feel a little relief.  I had actually thought of her the day before wishing I'd see her (instead of some of the other residents I was seeing).  Turns out- she was the senior pedi doctor on the floor we were on, and while she was not directly following her case (as in, assessing her, putting the orders in, etc)…she was there in rounds, and if I ended up really needing something done that I thought wasn't getting done, I knew I could go to her.

So they roll her down to radiology.  I went with her.  The anesthesiologist comes in and introduces herself and gets me to sign anesthesiology consents.  Again- I asked if they could please give her something for pain.  She immediately asks someone to pull a certain med, and tells the nurse in there that we need to put her on the bed because it will make her a little loopy/weak.  So with her now crying even more…I place her in the bed.  She's crying pretty good and I honestly do not even remember what she was saying.  And it was in these moments that I was coming to the realization that I was about to have to leave her side…and that I would not see her again until after she has possibly had surgery.  And I hated that feeling.  The anesthesiologist gave her the med and it started acting fairly quickly.  She was still kind of whiny, but definitely more calm and less aware of what was going on.  The anesthesiologist told me she wouldn't remember this part and so as much as I was trying to hold it all in…I lost it.  I had not and did not want Grace to see me crying….and in this moment I still didn't want her to see me crying…but I couldn't hold it in anymore…and the fact that she wouldn't remember made it a little more ok.  I'd wipe my tears so she wouldn't see and she never said a thing.

I don't remember exactly how it happened, but she found out I couldn't go with her and she knew enough that was going on that she protested a little.  I gave her one last kiss and they wheeled her off.  The nurse showed me the waiting room.

So I sat there alone.  Geoff was on his way, but hadn't made it there yet (Dad and Kay had come over early to watch Parker and Nolan).  They were running a little ahead of schedule (which was fine).  I sent text after text to family and friends to pass the time.  I played candy crush.  And I think it was about 30 minutes later that the ortho surgeon came out.  He was about a minute into explaining everything when Geoff walked up.  So the doctor introduced himself and started telling him everything.  He said that they did find fluid in her joint and they did think that they needed to go ahead and take her up to the OR.  They'd make 2 small incisions and drain and clean out the joint, then leave a drainage tube in that would stay for 2 days.  He said it would take 15-20 minutes.  

And that was that.  He told us how to get to the surgery waiting room.  I think we waited for about 30-45 minutes from that point until someone came to get us and took us to a conference room.  The doctor came in to let us know how the procedure went.  He said it went well.  The fluid was a little cloudy and they were going to send it off for a PCR (a test to detect and identify infectious disease which take a couple of weeks to get the results back)….they would also try to culture it, but he said that it would usually on grow something back about 30% of the time…and do a CBC on that fluid.  If it was septic arthritis…the bacteria that is usually found is either Staph or Kingella.  He said she'd be in recovery for another 15 minutes then they'd come to get it.  I think it was another 30 minutes and they let us come back.

It was pretty bad initially.  She was basically coming off the bed and wanted me to hold her (which I couldn't) …so I was leaning over the bed hugging her.  She was still out of it from the drugs and surgery, but she was in a little bit of pain and just kept repeating over and over again, in her newly hoarse voice, how she wanted to go home.  There was no reasoning with her!  She did ask me once if I was there with her when she was gone and I told her no and she cried a little and said that she had wanted me to be with her the whole time.  They gave her 2 doses of morphine while in recovery, and by the time they started to take us back to her room, she had calmed down tremendously.

Back in her room about 15 minutes and she was completely settled down and ready to watch TV.  By this point, I had not eaten in 24 hours and so I left Geoff and her in the room and headed down to the cafeteria to eat.  She was already asking about eating soup, but we waited just a little bit longer to make sure she wasn't going to get sick from all the anesthesia and just everything she had been through.


Her right hand has the IV….they almost lost it during recovery because I think as she woke up she was flailing about, but they managed to save it and put more tape and an arm board on.  Her left arm wrapped in an ace bandage with a drain coming out, with the drainage compartment resting on her stomach.

After I came back up to the room after eating lunch…Geoff left soon after to get back to the other 2 and to pack some stuff up for me.  Then Dad and Kay brought it up to me.  

Right before they left- it was time for some more pain medicine and Grace was flailing that arm about trying to get the nurse to stay away…and her IV went out.  When they 'saved' it during surgery…they weren't able to put a wenaguard back on it, so she used clear tape…which really isn't that sticky…and she was sweating a lot….so I'm thinking that IV was on borrowed time anyways.  It took them 3 times to get her next IV.  And by the time they finally got it in…we were all over it!  Oh I prayed and prayed that this IV would last.  The antibiotics she was taking are caustic to veins…and in addition, at this point- they had blown quite a few in her right hand….and her right hand was really all that we had to work with.


She was cleared for a full regular diet…but all she wanted was chicken noodle soup and a shake, which we ordered 3 times this day (she had 2 vanilla and 1 chocolate, but didn't like the chocolate).


My mom came up to the hospital about 7pm (right after they got her IV in)…and after I finished feeding Grace her soup (because, obviously, both of her hands were unavailable….and because she only wanted me to feed her)…then I left them to go downstairs and eat.  I stayed out of the room to eat just to have some time to decompress and be out of the room.  I had thought I could do it all on my own…which I could have ordered for them to deliver in the room…but I was really so thankful that she came and I know she was so tired from the weekend, as well.  I was also able to take a shower before she left (I just still wasn't ready to leave her unattended).


When I came back to the room she was in good spirits, giggling, talking, and watching Brave.  It was all too fitting.


We had a pretty good night this night…she had to be waken a couple of times for meds, both IV and oral, and for vital signs, but she went back to sleep pretty easily.

Day 2 in the hospital coming up next…..
(It is taking me very long to write all of this out, but I am for her memory's sake, for family to be able to see and read the whole story, and really- as therapy and debriefing for myself.  I've already started on the rest of the story- it is just taking me so long because I haven't left out many details, per usual.  :)  But I am doing my best to hopefully finish part, if not all, by tomorrow.)

Wednesday, June 25, 2014

first trip to the ER

Well- we've managed to escape it for some time…but Saturday morning made it into the books as we made our first trip to the Emergency Room.

On Friday night- the kids spent the night at my mom's house because Geoff and I were both scheduled to work early Saturday morning.   My mom called me around 8:30pm on that Friday and said that Grace had been rough housing and hurt her elbow.  She was crying and wouldn't let anyone touch it.  I should have known then that something wasn't right….but sometimes when Grace is overly tired and it's past her bedtime, as well, then she tends to have meltdowns.  She had also cried pretty good when we dropped her off which was also out of the ordinary.  So the fact that she was crying a lot about hurting her elbow made a little bit of sense to me.

Well- she ended up sleeping in bed with my mom and was up every 1-2 hours.  So around 3:45am- my mom got in touch with me again letting me know all that was going on.  I woke up Geoff and we headed to pick her up.  I called my work letting them know I wasn't going to be able to make it…and then Grace and I headed to the ER.

For the record- she asked me to take this picture of her.  She told me to take it and then send it to her daddy and let him know that she was being brave.


We did quite a bit of waiting.  A resident doctor came to examine her- a resident I recognized from my work since these doctors rotate through my unit.  I thought she was doing an ok job until……until she asked my 4 year old, "On a scale of 1 to 10, how is your pain?"  And when Grace answered, "Good," in her sweet little voice, and the doctor laughed and replied, "Oh you're so cute."  I about lost it.

It's pretty scary and nerve-racking to be in an ER with your sick {read IN PAIN} child, and to feel like you can't really trust that you're getting the care you need.

The room we were in had a TV, but wasn't turned on- so thankfully I brought an old iPhone and she watched a show on Netflix while we waited.


She had x-rays.  And then waited some more.  The attending came in and told us that her x-rays look good….there is no fracture (which I didn't really think it was fractured since she didn't really have swelling and we were setting an ice pack right on top of it, per her request, and that did not bother her).  He said he thought she had nurse-maids elbow….pretty common in toddlers and preschoolers….it's an elbow sprain…where a tendon (or ligament, I don't really know) gets a little out of place and there's this 'simple' maneuver they do that gets it back in place.  It can be pretty painful so they gave her some medicine and waited about 30 minutes.  

So 30 minutes later- the attending and another resident that I recognized (and to note, was not very fond of) came back into the room to 'set' her arm.  The doctor said she felt the 'pop' fairly quickly.  Grace was screaming and crying.  It was awful.

So the thing with nursemaids elbow is that once everything's back where it's supposed to be….most kids are good as new.  No more pain.  Well- Grace was still in pain.  READ: a lot of pain.  And she still wouldn't move it.  Not for anything.

They gave her this popsicle and thought they'd give her some time to settle down and then try to get her to move her arm again.  She sat and ate and watched Frozen (by this point the nurse turned on the TV for us).


So when they came back in, she moved it very little.  The attending (who I also wasn't very fond of, just to be honest) said that sometimes if you don't reset the elbow as soon as it happens, a little swelling can happen and cause a little pain…and so he said he was going to give her a splint to wear for a couple of days to help keep it stable.  And if by Monday, she still was in pain, then we would need to try to see our pediatrician….where they would maybe need to try to reset it.  What??????

Ok.  So here were go.  The nurse put this on and I think she was excited about it at first.  She said, "Momma- Parker's gonna say, 'I want one, too.'"  Hahaha!


So this sister had been up since 3am….and really didn't rest well before that….and even after pain medication….she would. not. fall. asleep!!  I guess her pain and adrenaline wouldn't let her.  But a few minutes in the car and she was out.  Thankfully!  I know she was so tired.


So I was hoping I'd be able to transfer her from the car to the house and her stay asleep.  But that didn't happen.  So we ate lunch, and then I got her to lay in my bed with me.  We laid there for about 45 minutes, and when her movie was over we headed back to my mom's house where Parker and Nolan were.

While at my mom's….we all just sat around replaying the events of the night and early morning.  All feeling guilty.  Like we should have known she was being serious.  How we should have trusted her and taken her in sooner.  How it even happened?!  And how bad we all felt for her that she was hurting so.

She was acting in pretty good spirits.  She even went and played Barbies one-handed with the girls for a while.  When it was time for Nolan's afternoon nap- I made Grace come on home with me to rest and then promised we'd come back for dinner.

She didn't put up much of a fight.  We went home, I put Nolan down, and made her a pallet on the floor.  She watched a movie and I ended up running around trying to clean the kitchen and do a few other 'cleaning' things around the house.  Her hair had gotten pretty matted up and so I laid some towels on the counter and washed her hair in the kitchen sink.  Being clean just always seems to make you feel  a little better I think.



So Saturday night- she goes right to sleep at 8pm.  I put her in bed with me.  She requested to sleep on my side, and I let her.  I slept on Geoff's side and he slept in her bed.  My mom offered to keep Parker another night because she was having so much fun and also to just give me one less kid to worry about.

She slept all the way until close to 4am.  She'd cry out that she was really thirsty and that her arm hurt.  I got up and got her some water and some ibuprofen.  It had been since before her bedtime that she had gotten medicine so I figured the pain was probably pretty good by now.  Only problem was…when I felt of her….she was hot.  I went and grabbed the thermometer, and she had 103.4.   I asked her what all hurt and she said her arm.  Then I asked if anything else hurt, and she said, my throat and my head.  I was thinking, "Oh my goodness…this girl can't catch a break!  How is this happening?  Bless her heart!"

She pretty much went right back to sleep, and then cried out about 15 minutes later that she was sweating.  I didn't recheck her temperature then, but figured that it must have been breaking then.  She went back to sleep shortly after.

I laid in bed then just going over and over everything that had happened.  Wondering if the fever could be from the elbow sprain?  But how?  That didn't really make sense?  But then the coincidence is crazy?  And it also got me thinking about how I didn't know what to do…how I didn't want to go back to the ER because I didn't feel like they knew what they were doing either (and I realize that there are good nurses and doctors that DO know what they are doing…..and I realize that we just did not have a good experience when we came to the ER for our first time…..but in the moment of thinking that you might need to go back….and reflecting on your experience…it makes you feel even more helpless)

So…she sleeps until 9:15ish.  Wakes up.  She's still warm….102.7 now.  I ask her what all hurts.  She says her arm and her tummy.  I ask about the throat and head, and she says no- just arm and tummy.

Not 10 minutes later and she's getting sick.  Bless her heart.  When she was done she told me she was sorry she threw up.  I told her it was ok and that I was sorry she didn't feel well.

Good news is….I got her all cleaned up and back on the couch fairly easily (minus the fact that baby brother was trying to grab the throw up bag and the throw up paper towels out of the trash can…and then tried repeatedly to climb in the shower with Grace).  She immediately requested some chicken noodle soup, and ended up eating the entire can of soup and a drank a thermos of water.  And she kept it all down.

I'm still suspicious.  What's this fever from?  Now it's a stomach bug?  But then she just ate the whole bowl of soup and a thermos of water and kept it ALL down and said that her stomach no longer hurt….only her arm.

So I give her ibuprofen every chance I could to try and keep the fever down (I would have tried to alternate the acetaminophen again, but now she hates the taste of it and it was already a fight to give her the ibuprofen…and as long as I kept it below 103, I felt ok about that because I know that fever has a purpose.  The lowest I got the fever was 100.5 one time.  The rest of the time it was greater than 101.  This is a very high for her.  I kept a cool rag on her forehead almost the entire time, as well.  She liked this because it felt good and would even request me to make it cold again when it got too warm (which was pretty quickly!).

Nolan eventually went down for his afternoon nap. And I sat up on the couch with Grace and watched Mary Poppins with her (before that she had watched all 3 Little Mermaid movies) and she was perfectly content doing just that.  I thought EVENTUALLY she HAS to fall asleep!  She's tired and the fever. She held out until Mary Poppins was almost over and then finally went to sleep for about 30 minutes.


When she woke up around 4:30…it had been about 6 and a half hours since her last dose of ibuprofen. She needed to go to the restroom and after I got her up and in there- I took her temperature and it was 104.1.  I don't play with temperatures like that!!!  I got her in the shower and was able to get her temperature down to 102.1.  I got her to take some more ibuprofen, also.

***So at this point, I'm pretty worried.  I'm unsure of the origin of this fever.  I'm not thinking it's a stomach bug.  And she has no other complaints.  And she's still not moving her arm.  And she is having higher fevers than she has ever had.***

I sent my sister an email tell her about the fever.  She calls me not long after and tells me she has read that sometimes they can get an infection after they hurt themselves.  I've thought this in the back of my mind…thinking maybe she threw up because of the pain and/or the fever.  But I was hesitant to call because I was afraid that no one knew what they were doing (I realize this sounds silly, but until you're in the situation I can see how it would).  She encourages me to call our pediatricians on-call nurse and to just be persistent and not let them brush me off when I think that there is something serious going on here.

So I get Nolan's dinner on the table first because I knew I wouldn't be able to call and talk if he was crying and needing me.  So as I fed him dinner- I called.

The nurses name was Jill, and we talked for probably a good 15 minutes (maybe it was 10, but it was quite a while).  I told her everything….and she felt like I was doing everything right and that I could probably just keep her home, and then just follow-up with my regular pediatrician the following morning.  She thought that the fever and throwing up was a coincidence and had nothing to do with her arm.  We just kept talking throwing things around…and I felt like the more we talked…the more she started doubting that staying home was the right thing.  She looked at another protocol and it also suggested we stay home.  Then finally- she decided to put me on hold and ask her colleague what she thought.  After a minute or so- Jill got back on the line and said that we had to look at worst case scenario…and worst case would be if she had an infected joint…and so we needed to go ahead and bring her in so they could further evaluate.  As much as I didn't want to go back to the hospital…there was a part of me that did because I wasn't convinced that her fever was from anything else and I was very concerned.  She said that she would call my pediatrician's office and the doctor that was on-call there to let them know and see what she thought and that Jill would call me back.  A few minutes later, she called me back and said that the pediatrician thought it would be a good idea to return to the ER and that they would put in the referral and would be expecting me.

Grace was so upset to come back because they had manipulated her arm so much and made it hurt even more (which I know they did this in an attempt to help, but that's hard for her to understand).  And she just didn't feel good and was in SO much pain.  Uhhh…just thinking about it make me sick.

Story to be continued…
(It is taking me very long to write all of this out, but I am for her memory's sake, for family to be able to see and read the whole story, and really- as therapy and debriefing for myself.  I've already started on the rest of the story- it is just taking me so long because I haven't left out many details, per usual.  :)  But I am doing my best to hopefully finish part, if not all, by tomorrow.)


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