A little of a lot.

Since it's been so long since I've updated you on Harlie, I'll start there.

Her heart

It has been over a year since her last heart cath (it was in December 2013).  I feel like a lot has changed since then, which is good. She had her pacemaker adjusted and she's been able to spend some good time on room air. I'm hoping that means good things for how her lungs are doing.

So, right now I'm working on getting a date for a heart cath soon. I didn't want to have to worry about it with our Disney trip in December. I thought it wasn't smart to get it done before - what if something happened during the cath that would've prevented her from going or what if we got bad news?  So, we decided to wait until after the holidays.

It's interesting to look back at my decisions sometimes. In 2013, I wanted her to have the heart cath, despite the fact that it was done on December 13th. I could have thought it was too risky to go into the hospital so soon before Christmas - what if something happened during the cath that would've prevented her from being home for Christmas or what if we got bad news? Instead, I had hope and thought, what if they can do something that could get her off the oxygen before Christmas?

I think I'll always have a glimmer of hope.  But, I also think after eight years of reality slapping me in the face, I can't deny that things don't always work out the way I want them to.  Let's just say that I've gotten a lot of practice in learning to live with disappointment.

Her back

Anyway, another area I need to work on is her back.  The last time we saw her orthopedic surgeon (a year or two ago, I can't remember) she said that when Harlie complains about back pain regularly, we need to do something. She really did not want to do another surgery.  She would rather wait until she grows more (like when she turns 12 or so). But, if Harlie is in constant pain, waiting wouldn't really be an option.  The pain is most likely due to the area in her spinal fusion that became infected. The infection forced her surgeon to remove the bone graft and didn't allow for optimal healing.  Doesn't this just look like it could be painful?

It's so gnarly because after it got infected, they had to put a wound vac in it for several days.  And she had to go into the OR several times for debridement.  It was a horrible time.

Anyway, at this point, she complains about back pain almost every single day.  Some days are really bad and she might tell me that her back hurts ten times. For a while I asked her if we needed to go to the doctor and she would say no. Until one day, she said yes. That means she's pretty serious.

Then, when we were in Disney, I noticed that she would sit in her wheelchair while leaning to her left.  And, about six months or so ago, she stopped using alternating steps while going up or down the stairs.  We worked really hard in physical therapy and at home to remind her to take alternating steps.  And for a while, she would point out to me when she was doing it without being asked (so she was proud of herself).  But then it just stopped.  And she absolutely refuses to do it.  Period.

So, something is up. Darn it.  So, I'm working on getting that appointment scheduled, too.

Sleep Study

Another thing I need to think about is getting a sleep study date.  We've been toying with doing this for years and have yet to accomplish it. I'm pretty sure that my reasons for/against a sleep study are more complicated than I would like them to be.

We've been able to cap her some lately, which is nice. And the other night she asked to sleep with her trach mask around her nose and mouth instead of it being around her neck. I took advantage, and switched the trach mask for a face mask and capped her.  That way she would get what she wanted, and oxygen, too.  She fell asleep like that just fine and maintained good sats for a while.  But, I had a hard time sleeping knowing that she was capped without proper monitoring. So, around 1am I got up and took the cap off and returned her to a trach mask. She was making some noise (almost like snoring - definitely some obstruction noise), but her sats were at 84 instead of 91. Not sure if that means anything really. I just don't know.  I suppose we should do it, just to get some sort of data, if nothing else. But, I'm just not excited about anything having to do with it.  And decannulation (getting the trach out) isn't that simple. She has so many other issues.  I'm just afraid (among other things) that it might complicate another thing or that it will be temporary.  Anyway, far too deep of a discussion for today. So, as usual, I put off the decision for another day.

Hearing Aid

We finally got in to see her audiologist a few weeks ago.  We haven't seen her in far too long. But, as it turns out, it's been FIVE years since she got her very first hearing aid.  I can't believe it.  It almost feels like it happened yesterday. Anyway, she's due for a replacement.  Apparently they don't last much longer than that.  So, she got a mold of her ear and got to pick out another aid.

She puts this foamy stuff in her ear and lets it harden.  Then pulls it out to send it to the company to have the ear piece made.

She picked out a pink hearing aid (the one she has now is purple).  It should come in soon.  Oh, the things we find exciting!

Nursing

Another new thing for us is our nurse, Terri is back.  Harlie was happy to see her.  Terri hasn't worked here in a little over a year.  We missed her. We also made another change and let the nurse that was sharing the week with Brandy, go. I can't go into details, but I just felt like I had no other choice.  We've been so incredibly lucky with our home health nurses that I've never really felt like complaining about having nurses that much.  I mean, the requirement of needing them totally sucks and I don't know a soul that would argue with me there.  But, we've had such wonderful people that I've always felt good about it. They allow me to live as normal of a life as possible and I am eternally grateful for that.

But, home health nursing is a weird arrangement. The nurse is employed by a company. But they work in a patient's home. So, as a patient's mother, I am not their boss.  But, I have a say in what they do with my daughter. It is such a gray area. And when you want to make a change in nursing staff, you tell the agency, who then tells them.  There is no notice given to the nurse.  Which stinks for them. I shouldn't have to explain that it's just not smart to give a nurse notice. It puts the patient and patient's family in a vulnerable position.  But, typically in this business, there usually is another family who needs help.  It always seems like there are more patients than there are nurses.

So, making this change back to Terri wasn't as well received by one nurse.  And she sent me a horribly ugly message a couple of weeks later.  It was upsetting to read. It's clear she didn't like me and judged me poorly in a number of ways.

Think about that for a minute.

Someone was in my HOME for over a year, and was a caregiver to my child with limited communication abilities (whom I love more than words could convey) - and didn't like me.  Judged me.  Doesn't that sound horrible?  One should never have to have someone like that in their home.  I feel so violated.  Can you imagine having someone in your home watching you parent?  And judging how you live your life?  Ugh!  It's an awful thought! As if our life isn't painful enough anyway.  I keep thinking about some of the things she said and how we never asked for any of this. I wish we never needed a nurse. I love our nurses, but I would have been perfectly happy having three healthy children and never meeting them in the first place.

So, for now, I am done with strangers.  I would rather go without than having to start over with someone new right now.

Independence

On Monday, the kids didn't have school.  And we didn't have a nurse scheduled.  So, after Harlie's teacher came in the morning, I took all three kids - all by myself - to the mall.  I've never done that before. Harlie got a Build a Bear gift card for Christmas and all three had some Christmas money to spend.  So, we went and Harlie picked out Mikey, the TMNT, of course.

And Cooper picked out Toothless from How to Train Your Dragon.

Then, we went to Toys R Us and let them spend the rest of their money.  Murphy picked out two Disney Infinity characters, Cooper picked out some Trash Pack things with what he had left over after getting Toothless, and Harlie picked out a Baby Alive baby with a toothbrush and toothpaste.  They were all very happy.  Then we went home.  Success!  It's times like these - just being a regular mom, and not a special needs mom - that I've lost.  I'm ready to do more of that, and less medical stuff.

Feeding

Oh, and I almost forgot... another milestone for Harlie! I think I can officially say, that after eight years, Harlie finally knows what hunger is.  Wow!  She will tell me that she's hungry and will let me feed her.  YAY!  It doesn't happen every feeding, of course.  But, I will take it!  I'm very happy about this development.

My nephew

I've been able to spend some good quality time with this little guy lately...

His name is Chase, and he is my younger brother and his fiancee's baby.  He's about to be six months old. He's super cute.  And I've been keeping him a couple of days a week for the last few weeks.

Harlie took this picture.
She cracks me up.

Harlie loves him and helps me throughout the day.  She gets me his clothes and diapers and wipes.  And always makes sure he has a toy within reach. Last night, I wanted to get a pic of the two of them together.

And she decided she needed her eye patch.

And he clearly thought she was crazy.

Rooney might be a little jealous.

Or he saw that my arm had no support, so he came to my rescue.  Either way, he's such a good dog and is so tolerant.  Chase likes to grab his hair, and he just takes it.  Just another reason why Pugs are so great.  Man, I love that dog!

Okay, I think that's all I can do today.  Chase will wake up from his nap anytime now.  I have another post already started.  I am trying really hard to work this blogging thing back into my life.  I missed it!

Thank you for reading!
~Christy xo