Wednesday Update

Whew!  Lots to cover...

Cultures from the abscess have grown nothing.  That doesn't mean that there aren't any bugs.  Clearly, something was growing.  But, since she was already on antibiotics for two weeks, it skewed the results.

I'm finding it hard to organize my thoughts to make all of this fairly simple to read and to understand.

Docs Involved in Harlie's Care:

Plastic Surgery
General Pediatrics
Infectious Diseases
Pulmonary
Cardiology (limited, but here should we need him)

Some of these specialties have several people - like an attending, fellow and resident.  Throw in that the weekend teams switched on Monday to new people.  So, the number of people I've spoken to while here is quite high.  The number of times I've repeated myself and answered the same questions is also quite high.

So, we had a plan over the weekend.  We were all on the same page.  Then the teams switched and we had to start all over again.  The plan was that she would get a PICC line (IV access you can go home with) on Tuesday and would remain on IV antibiotics for several weeks.  What meds and the time on them was up in the air until the cultures came back.

On Monday, I spoke with the ID docs (the resident and fellow) in the morning.  Plan still the same.  But later that day she lost her IV.  The nurses tried twice to get another one in, but Harlie fought so hard that they couldn't do it.  Then they gave her some Versed to calm her down and tried again.  Still couldn't get one in.  At that point, they were done.  They weren't going to try anymore.  Which is good, because that meant I didn't have to fight that fight.  It's very hard to know what to do as a parent - on one hand I want to say, "stop, that's enough" and on the other hand, I want her to get those IV meds!  Both are important.

They called ID and informed them of the lack of IV access.  By this point, she had missed a dose of each.  The attending ID doc switched her IV meds to g-tube meds (Augmentin).  Then, an intern (or a resident?) came to tell me that the plan changed.  They were just going to leave her on Augmentin and were not going to give her a PICC line.  This decision was based on the fact that the culture was coming up empty.

I had not ever met the attending - so I asked to speak to him.  He and the fellow came to talk to me and we went over some things.  He explained that the culture didn't grow anything, so it was probably a superficial infection, which wouldn't require IV meds.

I said I thought that would be under-treating her.  The culture not growing anything doesn't mean anything to me.  Meaning, that I don't care - we should base our decisions on the whole puzzle, not just that one piece.  Plus, if they are wrong, and the infection comes back, then it's Harlie that pays the price. And it would be a hefty one.  And they are not sending me home with a kid who doesn't give me any indicators that something's amiss (she doesn't get fevers, she doesn't complain about pain and she is fine one night and has an abscess the next morning).  AND, let's not forget that we are trying to buy time with this hardware in place so we can leave it in for as long as possible.

Worth the risk?

I don't think so.  So, I told him that he needed to discuss it with Dr. Rhodes since she is the only one who's seen the infection on the inside.  If she was fine with it, then I would be, too.  Don't get me wrong, I would love it if it meant Harlie didn't need to get a PICC line.  But, my gut told me that would backfire.  

The next thing I knew, Dr. Rhodes came by.  She said, "The plan is for her to get a PICC line on Tuesday."  Too funny.  But here's the not funny part... she said that she needs to look at her wound and change her dressing at least every other day.  Which, right now, means sedation, which she said she cannot do as an outpatient.  That means that she needs to stay inpatient until the surgeon can close her wound.  She said it could take up to two weeks.  Gulp.

Our nurse that day was standing with us when she told me that and I was speechless.  She looked at me and said, "I'll move you into the corner space."  The corner space here is the only room in the unit.  It has walls and a door, and the only window in the unit.  We were moved a few hours later.  And being in this room does make being here SO much better.

That night we had a visitor...

Donna and Harlie

My friend Donna came by and we had dinner together.  After she left, Harlie started to have some respiratory distress.  She was working really hard to breathe and her oxygen requirement went up to 75%.  For the next couple of hours they tried different things to help her - chest PT, bagging her (using an ambu bag to force air into her lungs), lots of suctioning, and breathing treatments.  They called the PICU charge nurse over so she was aware of what was going on, just in case they had to send her to the PICU.  After all that working, they finally got her straight and back down to 50% oxygen.  It was late, but her night nurse was good and told me to go home so I could get some rest.

Tuesday, August 27

She got the PICC line in the morning.  When she was transported into Interventional Radiology, she looked really scared.  Everyone was wearing scrubs and masks.  She started to cry and tried so hard to hold back the tears.  I told her it would be okay and that she would go to sleep and she would be back in her room soon.  You should have seen how brave she was!  They let me transfer her to the table and let me stay with her until she fell asleep. She is such a good girl.  Really.

Smiling for me, despite being scared.

They asked me about a preference for a PICC line placement.  I asked them to try her left arm first.  Whenever she has an IV in an arm, she acts as if it is broken and refuses to use it.  Or she tries to hide it from people so they can't mess with it.  And with her starting school soon (hopefully) I want her to be able to write with her right hand.

The surgeon went into IR and cleaned her wound and changed her dressing.  She removed the drain line that was in there, so that's a good sign.  She said the site looked clean.  She packed it with a dressing that changes color when it touches bacteria.  It was white when she got back to her room and by that night, it was purple.

The problem is that she would rather leave the site exposed to air - but due to it being located between her drool and trach secretions, that's not an option.  And she said you don't close a wound that has an infection.  But, in her case, again because of it's location, she's going to have to close it.  Which is why she's playing it safe and taking all these measures to make sure she does everything she can to keep this infection from growing.

While Harlie was in IR getting all that done, I returned to her room.  After I got there I realized I should have gone outside for a walk or something.  But, I wanted to be close just in case they called me or something.  So, I started to try to get somethings done.  One thing on my list was to let Harlie's hearing impaired teacher know that we have to cancel our session for this week.  I sent her a text and she replied right back that she was at the hospital!  So she came up to visit.  It just so happened that she was here to observe a cochlear implant surgery and baha surgery.  How crazy is that?  Since Harlie wasn't here when she came up, she said she was going to come back that night to spend some time with her.  How awesome is she?!  I've always known we were lucky to have her!

She returned that night around 6:30 or so.  And her and her husband stayed with Harlie while I went with Tom, his mom and the boys to dinner.  A few hours earlier I started to feel bad.  By dinner I was feeling very crummy.  I know have a cold.  Crap.  We went back to the hospital and Cheryl and her husband were still there!  She is so good to us!  We spent a little time with Harlie and by 8:30 or so, she was ready to go to sleep.  I felt so bad, so I went home too, so I could get better sleep.

Wednesday, August 28

I woke up this morning and felt awful.  I was slow moving to get to the hospital.  Then the traffic was bad and it seemed to take forever to get to the hospital and park!  So, I missed rounds.  I felt so guilty.  But, I was told that she woke up at 6am (so unusual for her - she's such a late sleeper) and told her nurse that she wanted her hearing aids.  They found the container and handed it to her.  Harlie took it and put the battery in, closed the door and put it in herself!  She is so funny!  Then she took her BAHA, put the battery in, closed the door and lifted her hair up so they could click it on (she can't do that yet).  They tried, but didn't know how hard to push and were uncomfortable trying to do it.  So they told her I would do it when I got here.  I love that she was able to communicate with them.

Today we had more visitors.  Lynda brought her girls and they were hoping to paint Harlie's nails.  But she said no.  Then Sally and her kids came.  Her daughter Annabelle brought a Lots O Hugging bear (from Toy Story 3) for Harlie.  Oh, and Lynda brought her a tiara so she would give back Jessica's.

Annabelle and Harlie.

These are the worst pics!  I think it might be time to replace my cell phone...

Charlie, Samantha, Jessica, Harlie and Annabelle.

The kids and the moms.

We could never have done this in a curtained area!  I am so thankful they moved us to this room!  I hope, despite all the crap Harlie has to deal with, that she knows how much she is loved.  She was surrounded by lots of laughter today - and laughter is healing, right?

Later on in the day my niece and nephew, Maggie and Charlie, came by to visit.  But Harlie fell asleep while they were here and I didn't get their picture.  Darn it!

You might remember me mentioning that Harlie had a CT scan of her spine coming up.  Well, it was scheduled for Friday.  They worked it in for today, just to get it over with.  So we went down for that.  She looked scared again on the way there.  I told her it was a CT scan and it was the big donut and she would remember it when she saw it.  As soon as we walked into the room, her face lightened up.  It was as if she thought, "Oh, I got this."  We had the same tech help us with this scan as we did on Friday when we got here.  It's so funny to get to know so many people so fast when you're in the hospital.

I don't know how she can be so happy.  But I love it.

Oh, I forgot to mention the chest x-rays... After all the respiratory distress on Monday night, they got a chest x-ray.  It showed pulmonary edema.  I think this is good (versus having pneumonia) because it is treatable with Lasix (a diuretic to help you get rid of the extra fluids).  I've always felt that she was fluid sensitive, meaning that her heart and lungs have a hard time processing an increase in fluids.  And with all the IVs, food and water, plus the constant sedation, it's been too much.  She's been coughing almost non-stop.  So she's been asking to be suctioned non-stop.  This girl keeps me busy!

They also started trying to use a vest today to help loosen up her lungs and make it easier for her to clear her secretions.  I've asked about this device in the past.  If it helps her, I think her doctor would be agreeable to getting one for her at home.

I can't believe how agreeable she was to putting it on!

They have it set on a low setting now, so she can get used to it.  Never having seen it before, it looked pretty darn fast/hard to me!  I really can't believe how well she tolerated it.  They did it for 15 minutes, two times today.

Her coughing continued to get worse throughout the day.  So, they took another x-ray and saw no improvement from Monday night.  I told them that I had just weaned her off Lasix (which she had been on since we were in Boston in July) so maybe she needs a daily dose again.  They agreed and they started it tonight.  She's better already since that dose.

Just in case we were getting bored... When she got off the potty tonight, it was pretty obvious that she has blood in her stool.  Seriously?  You have GOT to be kidding me.

I really, really don't want this to happen here.  Back in February we had an issue with this same problem and it was a nightmare.  And I've seen the doc that we had back then in the hallways this week.  So I bet that means that he's on this week.  Which probably means that if we had to have a consult with GI, he would be the attending.  UGH!  Her nurse took some for culture and a group of residents (I assume) came in to discuss it with me.  I hate everything having to do with GI issues.  We decided not to do anything at this point.  She can't have anything else tonight anyway (because of the sedation in the morning).  And it's too late for an exam, etc.  We are just going to see if the problem continues.

As the day wore on, I felt worse and worse.  I was really hoping I could go home tonight.  Especially since our night nurse is the nurse we had yesterday.  So, she knows Harlie well.  But, Harlie is headed back to the OR in the morning and she is first case.  So they are going to take her early.  And there is no way I could get here that early.  So, I'm just going to sleep here.  It's been such a busy night.  She got a bath and got her hair washed for the first time in almost a week.  They did the vest after 10pm.  And she is finally going to sleep now.  

I have been trying to write this post for days.  I can't begin to tell you how busy our days are.  There are so many interruptions!  On at least four occasions I have started to reply to a message, and was never able to finish typing.  So, if you are waiting on a reply from me - I am so sorry!  Hopefully tomorrow I will be able to get some things done while she's in the OR.  

Okay, I must stop now.  I am super tired.  Thank you so much for all your messages of love and support.  It's probably one of the main reasons why I haven't lost my mind yet.  Although, if things don't turn around soon, it could still happen. 

Much love,

Christy xo 

Noon update

Harlie seems to be doing okay. She actually got a few hours of sleep this morning. But for most of the night something was being done to her. I slept some - maybe two to four hours with some interruptions. At one point I woke up and could tell there was a lot of activity in the room. I asked the nurse what was going on and she said that her blood pressure was trending low. And her blood gases weren't great. And because of those things they have not given her any pain meds since a dose of morphine right after surgery. They don't want them slowing down her system anymore.

The plan right now is to give her IV antibiotics for the infection. Infectious Diseases(ID) have been called and they are going to come and talk to me about their plan for ABs. She will most likely get a PICC line (just like she got last year - which is like an IV so we can give her those strong meds from home). That means weekly dressing changes which totally sucks for her on top of all the pain she's been through. But I know that things could have been way worse, so I am counting our blessings.

Unfortunately, she will have to go back into the OR on Thursday for another irrigation and debridement procedure and cast change. So I really don't see us leaving before next week. I have no idea how long they will want that vac dressing (suctions out the goo from the wound) to stay and we clearly can't leave with that.

I will have to talk about this more later - but that doc we saw in Richmond on Saturday (along with his attending physician) is getting a letter from me along with the photo of her wound. He was deceptive in the way he communicated his title to me (called himself Ortho Chief instead of Ortho Chief Resident) which is very different. And I just found out he did the same thing to the Resident in DC on Saturday over the phone. So when the resident here in DC was talking to him he thought he was talking to someone with many more years of experience, so he went with his decision. There are so many things wrong there that I cannot leave it alone.

All in all, I think we will be here till next week for sure. Her wound has to start healing from the inside out, and the vac dressing has to be out before we can go home. I will be happy if we are home in time for Murphy's birthday on the 11th. I cannot believe he will be 7 years old! I really hope he and Cooper are doing okay. It must be unsettling (even if they don't show it) to see everything's fine in the morning only to get home and find Harlie and I gone for the next week or so. Sometimes I can't believe this is our life. It is so weird to feel so incredibly lucky and blessed but cursed at the same time.

Thank you for all your support. You might not know what to say - but just knowing we aren't forgotten makes a big difference in our spirits - my spirits especially.

Thanks,
Christy

Quick update

She's out of surgery and she did great. I am so so thankful. I was really very worried. I will give more details later - I am updating from the iPad and it is difficult to type a lot.

It has been super crazy. So busy that I haven't even been able to call my own mother! Sorry Mom! The cell phone reception was terrible until we got upstairs. And now it's too late to call.

They have a suction dressing on the wound now. And she has a new cast. It is very different. More on that later. But it now has a hole in the back for access to the wound. It is so gross. Seriously. Might post pics later. The incision is longer than I expected and she had to reopen most of it. It looks like we got to it before the infection got to the hardware (screws) so that is great.

I am so glad I brought her. More time could have made this a much different story.

She is trying to sleep now, but they are putting a foley in her because she hasn't peed and they want to know her fluid output.

I will try to get some sleep now. Heather had to drive back home. She made this a much more bearable experience for me. So thank you, Heather!

Thanks for all your support!
Christy

Just about 9 hours to go...

Well, it is 11pm on Wednesday night and tomorrow is the big day! Harlie will be wireless soon! We have to be at the hospital at 6:30am. That makes for an early morning since it will take us about an hour and a half to get there.

Her incisions are still looking pretty bad. I hope you're not too disappointed that I don't have new pictures to show you. hehe

We ended up taking her back to her pediatrician again on Tuesday for another shot of Rocephin. So, hopefully we got a good jump on the infection.

We've been doing the best we can to clean the site (squirting sterile water into the hole with a syringe). But that's really difficult considering the location of the infection. She drools, she vomits, hair gets caught in it and we can't just pour water over it - thanks to her trach.

Water + trach = bad.

I am so thankful that tomorrow someone else will be taking care of that wound and getting it nice and clean. Her surgeon will debride the wound, which is probably pretty disgusting, but she'll be asleep, so that's good. When Brandy and I lavaged (irrigated) the site yesterday, it took all our strength to hold her down. It was an awful experience - for all parties involved. Not mother-daughter moments I wish for, of course.

I am hoping we get the results back from the culture tomorrow. That way we'll be better able to tailor the meds to the specific germ or bacteria. I just hope it's nothing too serious.

I am also hoping that we get to come home tomorrow afternoon. There is a possibility that she'll have to stay overnight, but I'm hoping that doesn't happen. But, of course, I have to have plans for both scenarios. And if you know me at all, you probably know that I HATE logistical details. You leave at x time, drop off so-and-so (don't forget the car seat), then come and pick me up by x time to get to xyz in time for blah, blah, blah.

I'm more of a big picture kind of girl.

Yes, we're going, Hopefully we'll be on time. And hopefully we'll come back some time that day. Perfect plans as far as I'm concerned. No commitments and it's flexible, should things change.

Having to make back-up plans for a situation that might occur just makes me tired. And plans made too far in advance are sure to change, so why waste the energy? Take this procedure for instance. It was supposed to happen today. But last week they called me to tell me they had a problem with the OR schedule, so they had to move us to Thursday. Luckily all the plans that I managed to make in advance were easily changed (like who's watching Cooper and how will he get there, and who is getting Murphy, etc.). Again, logistical details I don't like to think about so I'm going to stop talking about it.

Well, that's all for now. I won't be able to update the blog during day (total bummer) but will hopefully be able to tomorrow night, from the comfort of my own home. Please wish us luck!

Many thanks!
~Christy