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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.)


Viv said...

Sweet little Grace had to go through so much! I'll bet it was so much harder on y'all too!

Courtney said...

My goodness! What an ordeal!!!

jrjones5876 said...

Goodness. I'm so sorry you all had to go through this. It's just awful seeing your little ones suffering.


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