Wednesday, July 31, 2013

How we are doing...

I know I haven't posted in a while.  I have a hard time posting when things aren't good.  I like to be positive, and I really don't want to complain.

But, things have been tough.  And that's just the way it is.  I know it will get better.  It has to.  But, for now, it's hard.  Really hard.

Here's the deal:

1.  Harlie is gagging on her own secretions.  A lot.  It's awful.  I feel so badly for her.  She is now carrying around a bowl with her to spit her stuff into.  I am so thankful for her nissen right now, because she would be vomiting all over the place if it weren't for that thing.

2.  The sounds she's making are not her normal sounds.  So, the sound she made to indicate she needed suctioning, sounds different.  So we are all re-learning what her sounds are and what we need to do when we hear them.  While we should have learned this by now, I am having a hard time with it.  I just am.

3.  Her mouth is a MESS.  Seriously.  It's also probably partly to blame for all the gagging.  I think she's gagging on something - like mucous?  Or a growth of ... something.  While it is a wonderful thing that she can open her mouth wider than she's ever been able to before - it does have it's drawbacks.  We can now see what we've never seen before.  And, quite frankly, God love her, it ain't pretty.  So much so that it physically hurts me.  I am seriously tempted to show you photos of what I'm talking about.  Her mouth is .... all effed up.  Period.  I ache for her.  I think of all the things that hurt typical people - wisdom teeth, cavities, braces, ulcers, etc. and none of them hold a candle to what's going on with her mouth.  It's awful.

4. Her gums are bleeding on the bottom left.  At least that's what I think is bleeding.  I mean, what else could it be?  Is a tooth moving because the environment has changed?  I have no idea.  Is a new tooth trying to come through?  What the hell is going on in there?  I don't know.

5.  Her shoulder hurts.  The right one.  Odds are it has something to do with the nerves in her face and neck and pain must be radiating down into her shoulder.  What do I do about this?  I have no idea.

Since my last update, Harlie's had a few doctor's appointments.

Last Wednesday, she had an appointment with her local cardiologist.  I needed him to check her pacemaker settings since they messed with them in Boston for her surgery.  I just wanted to make sure all was set how he wanted.  So, that meant we had to go to his downtown office.    Harlie was still on oxygen.  And our nurse couldn't go with us to the appointment.  And I had to get care for the boys.  Honestly, just thinking about taking her to this appointment alone, and having to park far away and walk her to the building with oxygen, made me want to cry.  So, I called my parents.  My mom had a prior commitment, but my dad was available.  So, he came to my house and drove me and Harlie downtown in my car.  He dropped us off right at the building's door.  Ahhh, thank God for parents!  Then, when we were done the appointment, I called him and he came right over to collect us.  So, so thankful.

The appointment went okay.  I asked him about Harlie's heart and why she moves so slowly (there is always a huge gap in the line at school because she can't keep up with the class).  I see other heart kids on Facebook all the time who are swimming and running and playing and biking, etc.  Why can't Harlie just walk around the block for crying out loud?  Or keep up in line?  I know her heart is different.  But, what can her heart really do?  Is it capable of allowing her to live life a little more like a regular kid?

He doesn't really know.  There aren't a lot of kids out there with her crazy heart and less lungs like she has.  He thinks both her heart and her lungs (and maybe even her spine since she's been complaining about her back a lot lately when she walks) are to blame.  We can do a stress test in a few years to see if we can try to push her to build up some endurance.  But, honestly, that has to be a back burner item for now.  We have bigger fish to fry right now.  Which always seems the case... All of it just makes me sad for her.

After our appointment, I took Harlie down to the main lobby to wait for my dad.  I went to tube her some water and she made such a loud fuss (the people around us looked at me like I was killing her) that I seriously could not tube her!  I think she's been touched so much in a negative way and had no choice but to just live through it, that she is trying desperately to get some control somewhere.  I had to wait until we got home to tube her.  Which, of course, put us off schedule for the rest of the day.  Small potatoes in comparison.

The next day (Thursday) she had an appointment with her pulmonologist.  Back downtown we went - but to a different building.  And I had Terri with me.  We were running late, as usual (mornings are so rough!) so I dropped Terri and Harlie off at the door and I went to park.  That way Terri could get her checked in right at her appointment time (9am) since I knew it would take me a good 15 to 20 minutes to park the car and walk to the building.

So, I get into the office and it turns out that they wouldn't allow Terri to check Harlie in.  So, I had to do it - 20 minutes late.  The nurse (who has been seeing us together - including Terri - for years) said that a parent or legal guardian had to do it and that it was for my child's protection.  So, her home health nurse, could not check her in while the parent was parking the car - for my child's protection?  For real?

Okay, I am going to try not to go off on a tangent about this - but this seriously pisses me off.  How many other ways can our life be made MORE difficult?  Last I heard, I can call a car service to come and pick Harlie and her nurse up so her nurse can take her to a doctor's appointment.  The only thing her nurse can't do - according to the nursing agency with whom she is employed is to drive alone with Harlie.  So, that's why I would have to call a transportation service.  And, just a few months ago - when I had the flu, when I was recovering from my kidney stone - two of her nurses took Harlie to the ER for me, since I was in no shape to do so.  And Harlie was seen and all was fine.

But, now, her nurse can't check her in?  Are you kidding me?  For my child's protection?  What in the hell is this world coming to???

Anyway, we met with her doc and he sat down with us and really listened to me and thought about what was going on.  To spare you all the details, we don't really know why she requires supplemental oxygen when nothing appears to be wrong.  She sounds great, no signs of sickness, and her sats are in the tank.  I really believe that she didn't have pneumonia, but a collapsed lung the whole time.  Her white blood count was the only sign of pneumonia.  The x-rays look the same for both conditions.  And the trach cultures didn't grow anything that would explain her white blood count.  I asked if her WBC could have been her body's reaction to the surgery, cut bone and foreign material that was placed in her jaw.  He said yes.  Either way, by that day, her lungs sounded great.  And he said that he could hear her breathing by mouth!

He was thinking that since she was now taking air by mouth, that the oxygen we were giving her via her trach - wasn't enough.  So, we were giving her 4 liters, but really she was only getting a small portion of that since she was getting air through two different ways.  So, he was thinking we should upsize her trach from a 4.0 to a 4.5, which would reduce the air leak around the trach, and force her to rely more on breathing through her trach.  He said that while this may feel like a step backwards (which it totally does, since that was the whole point of this surgery anyway) that he thought it was worth it to do it temporarily, at least.  But, he was going to send a note to her ENT and let her make the final decision.

I also asked him about the whole energy and walking thing.  And he said that isn't possible to truly measure her lung capacity at this time.  At this point (and this is me talking here) I need to accept that she just can't do a lot, physically.  It's just hard to know whether to push or accept sometimes.  And sometimes, accepting feels like giving up.  

The next day (Friday) her ENT called me to make sure I was aware of the change in trach size.  So, she ordered it and I guess I will try it when it comes in.  I'm secretly hoping that she will be completely off oxygen before the new trach comes in.  Okay, maybe not secretly.  Because it really does feel like a step backwards.

By Sunday, the non-stop gagging and pointing to her mouth was unbearable. During the week I called her pediatrician and asked what I could/should do to help her.  It seemed like there was dead skin on the roof of her mouth and it was bugging her.  And possibly causing (or contributing to) the gagging.  He gave me a solution to make up and rub on the inside of her mouth.

I left to take the boys to a pool party and Tom stayed home with Harlie.  When I left Brandy was still here.  And her and Tom worked on her mouth trying to get the dead skin off.  Well, after a lot of work (and tears, but God love that girl, she wanted this done so she hung in there) this.... thing flew out of her mouth.  It looks like some sort of mucous plug to me.  It was hard and rubbery.

So, maybe since she's able to breathe through her mouth (presumably for the first time ever) maybe things (like her sinuses) are opening up and stuff (like the being that is pictured above) is able to drain out.  I have no idea.  Regardless, she was so much more comfortable!  And the gagging and complaining about her mouth stopped.  For a day.

It started again sometime Monday.  And by today (Wednesday) it was horrible.  I don't know how much more of the non-stop gagging I can handle.  And I'm not even the one doing it!  It's so awful.  Today she started carrying around a bowl.  And she even goes to the bathroom to rinse it out.

Anyway, after the increased discomfort and looking in her mouth with a flashlight, it looks like the stuff is accumulating again.  So, I tried to get in touch with her local ENT.  Her next available appointment was sometime in September.  So, I asked the girl for her email address so I could email her the above photo.  She said she would have a nurse call me back.  Which she did.  But, I had my phone on silent (UGH!) and didn't see that she called until much later in the day.  So, this morning (Wednesday) I called again, and left a message.  The nurse called me back and I gave her a very brief description of what was going on and told her I wanted to get this photo to her doc.  She told me that I should see her surgeon who performed the surgery.  Sigh.

This is one of those occasions when trying to get something done feels exhausting.

No.  I don't think her surgeon is who I need to see for this green slimy stuff growing in her mouth.  Call me crazy.  Granted, her surgeon should know about it, which is why I had already emailed her.  She had no info for me.  So there, nurse.  Please don't second guess me.  I'm not new around here.  I asked her again if I could just send this photo to her.  She finally game me her email address.

I promptly sent the email and I heard back in less than 30 minutes.  She wants to see her tomorrow.  She wants to culture the slimy stuff.  It could be some kind of fungus.

So, just a few minutes after that the same nurse I spoke to earlier called back.  Awesome.  She told me that she got a note from the doc that she wants to see her tomorrow at 10:20am.  In your face!  Is what I wanted to say to her.  But, I didn't.  I said, we'll be there, thank you very much.  How I haven't cracked, I'll never know.

I cannot wait to get to this appointment.  I want someone else - like a doctor - to look into her mouth and tell me what is going on and how to fix it.  Oh, how I hope we can fix it.  Soon.

In other news...

We are going back to Boston on Sunday.  As much as it pains us to have to go back so soon - it must be done.  Her surgeon is going to remove the pins that are sticking out.  This is good because as long as those pins are in, there is a risk of infection and we still have to clean them.  That is still a fight and one I want to end asap.

The logistics of trying to figure out when to go was a nightmare.  She sees patients in her office on Monday afternoons and Friday mornings.  Flying up on a Thursday (which we would have to do for an am appointment) and returning on a Friday or Saturday was WAY too expensive.  So we looked at Monday.   As much as Tom didn't want to take off more time from work, we had no choice.  Sigh.  We have so little choices in many aspects of our life.

And as a bonus, since Tom is taking off time to go to Boston next week, he can't go see his family who are going to be on vacation just a few hours from us.  We knew vacation this summer wasn't likely for us.  But we were hoping that it would work out for him to go for a day or so with the boys, at least.

Another thing I forgot to mention about what's difficult right now is that Harlie's hearing or maybe she's having headaches (which is totally possible after her surgery) is making her super sensitive to noises - especially Cooper's voice.  No matter what he's doing, she's annoyed by it.  So, between her gagging and her complaining about Cooper, my brain is bruised.  I can't send him away all the time and I can't make her head not hurt.  She complained more about pain today than ever.  We actually gave her pain meds twice.  And we aren't even turning her screws anymore.  Our last day of that torture was the 24th.  Boy does it feel wonderful to have that behind us.

Tonight, on our way up the stairs, Harlie asked to be carried.  I told her no, of course.  I'm always pushing her when I can.  She started to go up the stairs and I told her to alternate her feet.  I can't believe after all these years that I still have to tell her that.  Anyway, she seemed to try to do that, but then started to cry.  And asked to be picked up again.  I asked her if she hurt - it seemed like something hurt her when she tried to put her weight on one foot.  She nodded yes, and I asked her where and she pointed to her back.  The same area that she's been pointing to for a few weeks (and it's the area where she had surgery a few years ago).  She was crying real tears.  Something is going on with her back.  It's no longer a coincidence.  Deep breaths.

She has an appointment to see her orthopedic surgeon in October.  Guess I'll have to email her tomorrow.  I really wish this kid could catch a break.

Anyway,  I have more to write about - but it is late and I need to wrap this up.  I'm sorry I'm such a downer lately.  I know we'll get through this.  But, it's just sucky right now.  I hate seeing her look to me for help and me not be able to take away the pain or discomfort right then.  Kissing her boo boos does nothing.  And that makes me sad.  Plus, as I've said before, her life is shaping who she is and who she is going to be.  I hate that there are so many negatives for her to live with and through.  What does that mean for her future?  I'm going to have to up the amount of times I hug and kiss her throughout the day.  She needs more positive contacts in her day than negative ones.

Thank you for reading and for continuing to think of and pray for Harlie, and us.  Knowing we are loved and supported makes us stronger.

Much love,
~Christy xo


sandy said...

OMG - I wish we could do something to make it better.

Betsy said...

You guys are in my prayers. I can't even begin to imagine. Your post amazes me that you go through so much with her and yet you are still worried about being a downer. You are an amazing mommy and doing such a great job with her.

B-Mama said...

You are so positive and you deal with so much. Hang in there. Your empathy and compassion for your daughter are second-to-none. You fight so hard for her, all so she can feel and live well. You are running uphill and you're doing a great job. Hear our cheers; reach out for support. We're all watching in awe as you run the race. xox

Kerry Baldwin said...

Ah jeez, C, can't even begin to grasp all this from your POV.
My nurse is allowed to drive the boys to their appointments without me, in their own car. Or in mine. I don't get the -if she HAS an appointment and you are on your way- then how is that watching out for her safety??? If they are suspicious they can call you to confirm. BUt your nurse has been with you forever!

It's always got to be another thing.

Kisses to Harlie. Glad I got to catch up.

Love Kerry

Holly said...

I think you are amazing! Hang in there...

Susan said...

I've been in the place you are. It's so hard being discouraged for our kids' future. But even though things are harder for Harlie, she is loved so much and I'm sure she' glad to be living despite her physical trials. Even though it's hard it's worth it.

I'm glad you posted a picture of "the being". Although you'd described it to me on the phone a picture is worth 1,000 words. It looks almost like a retainer. Crazy is what that is! And I love that you got in to see the doc the next day. All the running in circles to get past the nurses is SO frustrating!

You have so much going on right now I really commend you for holding it together as well as you have. Really! I think things will improve after you get the pins removed. Good luck Monday! (((((HUGS)))))