Wednesday, August 28, 2013

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 

Sunday, August 25, 2013

Update with Photos

Hi!  I have my computer now, so here are some pics from the last few days...

FRIDAY, AUG. 23

The abscess.

Terri on the front lines - Harlie getting an IV.

CT scan.  Her third this summer.
Her fourth is scheduled for Friday (for her spine).

Daddy made it in time to see her before they took her into the OR.
I found that pug in the gift shop.  She had to have it.
Or maybe I did.  ;-)
Lynda came to hang out.

Smiling on the outside.  A whole bunch of other yucky stuff
being felt on the inside.  
SATURDAY, AUG. 24


Lynda brought Samantha and Jessica to visit.

They brought gifts, smiles and laughs.
We really enjoyed their visit.

Harlie inisted on keeping Jessica's toy tiara.  

Her IV pole looked too serious. 

Less than 24 hours later, her dressing was saturated.
But she was smiling!
More visitors!  Sophie and Rick Tangard.
Tom arrived with the boys around dinner time.  Then we got more visitors!  Rick and Sophie!  And they brought Harlie a beautiful silver bracelet with a heart charm.  It is so pretty!  Thank you so much!

Then I took the boys home and left Tom to spend the night at the hospital with Harlie.  Some of our friends were having a party that night and we were so looking forward to going.  I was thinking of taking the boys, but when I got into the car and started to drive home, it hit me how tired I was.  I really felt fine while in the hospital, despite getting very little sleep Friday night.  But, by the time we got home, and fed and walked the dog, I was DONE.  Too pooped to party.  :-(

SUNDAY, AUG. 25

She was scheduled to go back to the OR this morning at 9am.  My mom came over to watch the boys so I could leave to go back to the hospital.  They were running late (and so was I) and ended up not taking her until after 10:30am.

The surgeon said that it was clean when they looked in there, but that the area of redness was the same as Friday night (and not smaller, which is what we want).  So, that might show that it's a stubborn infection.  She left the drain in and she wants to clean it again on Tuesday.  She would rather leave the wound open, but since it's in such an unfortunate place (between the drooling and trach secrections) she really doesn't have that option.  So, she wants to get it to a place where she can close it (with stitches).  They also changed her trach and put another IV in her foot, just in case the one that is in her arm stops working.

The plan right now is to hang out on Monday and do nothing.  Then on Tuesday she will go into Interventional Radiology (IR) and get the PICC line and the surgeon will do the cleaning and dressing change at the same time.  Then maybe she can go home later that day or Wednesday.  Then we will have to come back for another cleaning at the end of the week.  Oh boy.

Hopefully we can get everything straight and settled in time for her to be able to start school next Tuesday.  And the sooner we get her home the better.  This is NOT how I wanted the last week of their summer to go!

Since my mom had the boys in the morning and then they went to a neighbor's house, Tom got to hang out for most of the day.  It was really nice.  We went out to lunch.  And then when we got back we took Harlie outside in the rooftop garden.  It was such a beautiful day.  Of course, because of the IV in her foot, she did not want to walk.




By 8pm, the IV in her foot wasn't working.  So much for that.

Well, it's late and I'm tired.  So, I'm signing off.  Thank you for all your continued prayers and support!

Much love,
Christy

Saturday, August 24, 2013

How quickly things change...

Wow. Too long since my last post. That's rarely a good thing. I'm never too busy having fun to blog. I'm usually too busy with yucky stuff to blog.

I have so much to catch you up on...but will have to save that for later. Plus, I don't have my computer, I'm on the iPad. So, I'm going to be as straightforward and brief as possible.

This morning I woke up to find an abscess at Harlie's surgical incision site. Clearly, full of pus. So, I had to forget about my TRX class at the gym (training has been impossible this summer) and take her to her pediatrician. He sent us to the ER at MCV.

I sent the boys to my loyal friend and neighbor, Bethany. What would I do without her?! And Terri and I headed downtown.

It didn't take long for them to see we had a problem. It was clear we were headed to the OR. They paged the plastic surgeon here. I actually met with this surgeon years ago when trying to figure out where we should go for more jaw surgeries. Ultimately, I knew we needed a CICU (cardiac intensive care unit), so having major surgery here just wasn't an option. But, when the ER doc told her about us, she remembered us! Impressive. I guess that speaks highly of her, or me...or both.

Anyway, she ordered a CT scan to see how far the infection tracked. Harlie still has hardware in her jaw to help solidify the new bone growth achieved from the distraction. Three months was her surgeon's goal. And that is due to come out November 20 in Boston. But, it looks like that's not going to happen now...

I had to talk to her surgeon in Boston before I could sign anything. She was in surgery all day today. But when I called up there and explained the situation, Dr. Padwa called me back in just a few minutes! She gave me her number and told me that she wanted to talk to the surgeon here before they did anything.

After a few hours, the CT scan was done, and it was time to go to the OR to have the abscess drained and cleaned. The surgeons spoke and had a plan...awesome!

I'm guessing they took her back sometime after 7pm. Dr. Rhodes said everything went well. I was pretty worried because of our last experience with a jaw infection (resulted in a cardiac code). Thankfully, this wasn't nearly as bad of an infection.

Here's the gist:

It appears that the infection has gotten to the hardware and bone. Dr. Rhodes said we want to buy as much time as possible to keep that hardware in place. So, she drained it, cleaned it and put a drain line in it. She left the site open and put a dressing over it.

Infectious Disease (ID) has been called, and for now, they've started her on IV Vancomycin. She will get a PICC line next week and will go home on IV meds (for six weeks). Well, that's the plan as of now. Things could change, of course.

I'm guessing we'll be here for a few days into next week. At least. A lot depends on what this infection does over time. Did this cleaning take care of it, or will it need to be cleaned again? Time will tell. Plus, they sent off for cultures and that will take a few days to come back. They need that info to make sure they have her on the right IV meds. Things are complicated by the fact that she has been on Clindamycin for the last 7 days and another antibiotic 7 days prior to that (AND for 3 to 4 weeks post-op -and she STILL got this infection!) so that might affect what grows in the cultures.

We will meet with ID tomorrow. The docs I spoke with tonight are going to try to get her records from Norfolk to see more details from that infection, to see if that helps them treat this one.

Clearly, we are going to have to do some investigating to see why this is a reoccurring problem. Great - more docs, more appointments... Yay us!

At this point we are hoping that this one cleaning did the trick, that we are able to leave the hardware in place for a while longer, and that this infection doesn't negatively impact the success of the distraction surgery.

It is super late, and I need to get some sleep. Thanks for all your continued support!!!

Much love,

~Christy x

 

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Friday, August 9, 2013

Boston Follow Up Appointment

Our trip to Boston earlier this week went well, I think.

We left on Sunday.  We took an oxygen concentrator with us, supplied by our medical supply company.  I think we are going to do that for all her future trips, too.  I don't know why we didn't think of it sooner.  But, this way, it doesn't cost us anything.  If we get the oxygen from up there, we have to pay to rent it and then we have to pay to ship it back.

Anyway, on Monday morning I went for a run.  The weather is SO much better there than here!  It was so nice!  Then we took Harlie to a playground just down the street.



And we went into a toy store and let her pick out a toy.  It's so funny.  Every time we do that and they have Playmobil toys, she always picks one.  And even more odd, she's picked out the hospital room set and the ambulance.  You'd think she'd steer clear from that stuff.

She got to play with her new set while we had lunch.  We took our food back to the hotel and ate in the courtyard outside.  It was very nice.  Then we headed on over to the hospital for our appointment.

The waiting room in the craniofacial clinic is small and always crowded.  But we have never had to wait that long.  They took some pictures of Harlie first.  We have to pin her hair back so they can see her better.  They didn't have pins, so I had to use bands.  Here's my crazy girl, who looks pretty happy.




And here's a few pics of what the pins looked like.  Her right side is more abnormal than her left, and required a lot more work (that's also the side that has her implanted fibula bone in it).  So, that's why it's not as clean as the left side.



Then we met with her surgeon.  She said she is happy with how things look so far.  She explained that her mouth closure didn't change - her teeth touch on her left side before her mouth can close fully.  But that's always been the case.  But now that we've added about an inch to her jaw, her skin is stretched really tight and can't close yet.  She told me to give her more time.  She believes she will get her lips to close and that she will swallow again.

I asked her if her jaw would recede (which happened after her first two jaw reconstructions).  She said no, and that yes, it is a little forward now, but that the rest of her head will grow into it in time.  My first thought was, "If I had a nickel for every time I've heard that..."  Sometimes I just have to laugh at some of the stuff I hear, and then have to live with.

We discussed the stuff growing in her mouth.  I was hesitant to show you a picture.  But, it's so hard to describe it and try to explain how awful it is.  This picture doesn't even do it justice.  But, you can clearly see the green stuff on her tongue.  And it is stuck like glue!  Some days are better than others.  And there is more closer to her tonsils in the back.


Anyway, she said she's had lots of patients that couldn't swallow, and she's never seen this before.  On this particular day, Harlie's mouth didn't look that bad.  And in fact, she had not gagged in a day or so.  I was thinking we were going in the right direction and that this would just go away with the oral care we were doing.  Since then, we found out that the culture the ENT took the previous week grew some staph bacteria.  So, we started antibiotics today.  I really wanted to avoid giving her more antibiotics so soon after all those other antibiotics she received in the hospital.  But, despite the good days, today was a really bad day, with tons of gagging and pain.  So, I didn't feel we had any choice.

Back to the appointment... her surgeon said that if things are not better by November (when we have to return to have her remove the internal hardware from her jaw) then she can do another procedure while she's in there to help with her mouth closure.  The negative (because you know there's always one.  Or ten.) is that she will have to put more plates in her jaw.  And some believe that the plates hinder bone growth - which we don't want to do.  So, she said she could do that, even though she really would rather not.  But, if she still can't close her mouth AND we are still dealing with this crud growing, then she will do it.  Because clearly she cannot live like this.  And I don't know how she can go to school and learn like this, either.  Not to mention how her gagging would affect others in the class!

We already have a date for that surgery, and it is November 6.

I also asked about her teeth.  Now that you can actually see the back ones more, I can see that they don't look great.  She told me to get her in to our local dentist and see if anything needs treatment (cavities, etc.) and if so, she will get a dentist to come and do it while she's under anesthesia on November 6th.  Pretty awesome.  Although, clearly, I'm hoping nothing needs to be done.

So, after we talked, it was time to remove those awful pins!  Woohoo!  Even though I know Harlie wanted them gone, too, I don't think she shared my level of excitement.  The surgeon asked who would be holding her and I made Tom do it.  After that ENT appointment the previous week, I wasn't about to do it again.


There's something about this picture I love.  It really looks like he was actually able to comfort her a little (a seemingly impossible feat!).


After they were gone, she seemed really happy.  Her shirt was soaking wet, so I had to change it, again.  And when I put it over her head (we had to be really careful with the pins in) and it didn't hurt her, she smiled.  I asked her if she was happy that the pins were gone and she nodded yes.

Our appointment was at 3:00pm and we were in the downstairs main lobby at 4:00pm.  That's pretty awesome.  So, I asked Tom what we should do.  And he looked up the movie schedule.  Despicable Me 2 was playing at 4:07 a few blocks away (right near Fenway).  So, we took off!  We ran the entire way, with me pushing her stroller (which is NOT a jogging stroller) on the city sidewalks (with lots of bumps) and I was wearing jeans and flip flops.  Awesome.  We figured there would be several minutes of previews, so we had a good shot of making it.  And we walked into the theater right as it was starting.  YAY!

She loved it and it was a great way to end the trip!  We walked from there back to the hotel, which was a good little walk.  Then we ate dinner in our room - leftovers from the night before.  On Sunday night Tom went to a deli and got some meats, cheeses and bread.  And some wine.  So, we stopped at Trader Joes to grab a salad and more wine to finish it off.

Harlie went to sleep super fast and had a good night.  We woke up early on Tuesday, packed and headed to the airport.


The gate we were flying out of has a play area.  So, we killed some time there...


You can see how she can't close her lips here, while she's trying to give Tom a kiss.


She really is something.  Overall, she's a really happy kid.  And sometimes, I don't know how she can be.  This week has been tough.  Well, this summer's been tough.  And I'm not so happy.  It's a struggle each day to be positive and not be angry at what life is for her, and for us. I will never stop grieving what's been lost.

And summers are always the toughest time of the year.  It's when you see pictures of families on vacation at the beach, kids jumping into pools, and kids just being able to enjoy life.  And it's when you see other trached kids get decannulated.  And when I see a post from a mom that says, "After one year and x amount of days, so-and-so FINALLY got his trach out," it hurts a little.  To them, I'm sure that one year felt like forever.  But, it wasn't.  I can't believe we are going on seven years.  And then I think of some of my other trach friends who have been doing this for far longer than that...

Another thing that has struck me this time is how little we can plan in life versus how much a typical family plans.  Like vacation, other summer activities, or what days they run.  I'm living day to day over here.  And things are always changing.  Plans are something we do not have the luxury of making.  And sometimes, that makes me really mad.

I'll give you one small example... I have raft day at the pool on my calendar for this coming Wednesday.  They do that several times in the summer and we haven't been able to go yet.  Well, I heard from Harlie's orthopedic surgeon about Harlie's back.  You might remember that she's been complaining of pain.  And when she emailed me back, she gave me two dates - the Tuesday we were traveling home from Boston and this coming Wednesday.  So, now we have to go to DC instead of going to the pool for raft day.  I know better than to tell the boys much in advance.  So at least they don't know.  Now, I know that's not a big deal in the scheme of life.  But, having the little things work out on occasion would really make a positive difference in my current attitude.

It's times like these that I need to focus on what's good in our life (and there's a lot) and continue to trudge forward.  Harlie saw both her speech therapist and her hearing impaired therapist today and both of them said (independently) that she is making a lot of progress in her lip closure.  So, that's a wonderful thing.  Between that progress and the antibiotics, hopefully we'll be in a much better place in the next week or so.  And with any luck, her back won't be a major issue.

Okay, that's it for now.  Thanks for all the love!
~Christy xo

Thursday, August 1, 2013

ENT appointment

Today we went to see Harlie's local ENT.

But I was determined to get in a run today.  So, I squeezed in a three mile run - in the rain - before we left.  For those of you who know me well, you know how much I loathe running in the rain.  Just goes to show how much I needed to run.  I was super short on time so I had to rush to shower and change and I had to drink my breakfast.  But, it was worth it.  My mom came over to watch the boys for me.  I knew this would not be a good appointment, so I really didn't want the boys there.

We pulled into the parking lot and as I was getting my stuff together, there was a knock at my window.  I about jumped out of my seat!  I turned to look and it was my friend Kat!  She saw us on the road and followed us there just so she could give me a hug!  I love my friends and how good they are to me! What a great way to change my mood!  Thank you Kat!

Coincidentally, when we got home from the appointment and I checked our mail there was a card in it for Harlie from Kat and her kids.  She sent it to the hospital, but it didn't make it to Harlie while she was inpatient.  Kat was smart enough to put MY address as the return address, that way it was still sent to me.  I'm impressed Kat!  I would never have thought of that.  The card is a picture of a sweet Pug (although that's probably redundant, huh?) with a hospital gown and a thermometer sticking out of his mouth.  Too cute!  Thanks Kat!

Anyway, after we said good-bye, we headed up to see the ENT.  I told Harlie every time she pointed to her mouth that we were going to see the doctor and maybe she would be able to help.  I tried to prepare her for sitting still and letting the doc into her mouth.  Whatever that's worth.

The appointment went as I expected.  It was a brawl.  That little girl can wear out three adults.  I sat in the chair and put Harlie in my lap so I could bear hug her with one arm and hold her forehead with my other arm.  Terri held down her legs and the PA held onto her hands or arms, whichever slipped from my grasp.  And the doctor tried to do what she needed to do in the middle of all that fighting.  I really believe it was painful for us all.

Her doc had to use metal tweezers (no sharp points) to get in there and pull out a sample.  It is really stuck in there!  She pulled one sample from the back/roof of her mouth and had to work really hard to get a chunk off the back of her tongue.  None of us could hold that down!

She sent the two samples off to culture.  She said she should have a preliminary report sometime tomorrow and will call me.  She said that as we swallow, we get rid of dead cells.  She thinks that those cells aren't able to go anywhere, so they are collecting, drying out and attracting bacteria.  She's gagging all the time because this stuff is sticking to the back of her tongue.  Ugh!  How awful.

She gave me the names of some oral gels and moisturizers to try to coat the inside of her mouth to keep it from drying out.  As soon as we got home, we tried them.  Applying this gel stuff (or spray) is not as easy as you might think.  Apparently this gunk has made her mouth sore - because she is SUPER sensitive to touch.  Coating the inside of her mouth with the gel - and doing that several times a day is going to be a battle.  More fighting.  I'm so over fighting her and causing her pain.  I wish I could just comfort her instead.

I will say that I'm glad this is all happening now and not after our appointment with her surgeon.  Now we can talk about this and hopefully get some more answers.  It sounds like this could be an ongoing problem.  What if she can't close her mouth for like... two months?  Two years?  Will this not go away until she can swallow?  Because, I have to tell you, we CANNOT live like this long term.  And her surgeon told me that if she can't close her mouth that she can do another kind of surgery in a couple of YEARS.

For now, we just have to hope and pray that Harlie will figure out a way to close her mouth.  And soon.

It's so frustrating.  You try to make one thing better, and other problems develop.  Not even problems that you could have predicted.  Because I have to tell you, right now, if this problem doesn't go away, I will regret this surgery with every fiber of my being.  I try to remember that I felt this way almost exactly one year ago.  And somehow we came through and life was enjoyable again.  That will happen again, right?

There are small periods of time when the fear of the unknown is greater than hope.  And that's where I am right now.

Oh, and another thing, the right side of her jaw looks more swollen to me (and to Terri) and she is really complaining about it.  Way more than she ever did post-op.  Tonight during her bath, her pin sites bled again.  And the incision under her jaw continues to bleed a little on the right side.  While she's not showing any classic signs of infection, I'm worried.  We've been there before - no signs of infection until it was full blown. Monday's appointment can't come soon enough.

I forgot to mention that our sweet neighbors brought up a present for Harlie right after we got home.  It took more than a week longer to get her up and playing.  This was her first true happy moment.  And she was playing with the remote control truck sweet Adam picked out for her.  He remembered that she wanted to play with his one day earlier in the summer.  Thank you Veronica and Bill - please tell Adam he made her smile, which made all of us smile.


Since it was a happy moment, I grabbed my sweet pup - who makes the days so much more bearable for all of us (probably me the most) and took a pic.  He is, by far, the easiest member of the family!


Thank you for reading and for always being there for us!

Much love,
Christy xo