Wednesday, September 11, 2013

Quick Update - Wednesday

I don't even know where to begin...  Things are "fine" here.  Harlie is "fine" but still not at school.  Normally, I send her as soon as I think she can handle it.  But, I don't think she's there yet.

Anyway, she is home.  We were able to come home Saturday afternoon.  On Friday night, I was getting very worried about her and the direction in which we seem to be heading.  She never seemed to fully recover from when she got sick right after Christmas last year.  We've struggled to get her off the supplemental oxygen and she's been on it WAY more than she's been off.  I don't want a new normal.  I want her to be "healthy" and happy the way she was before then.

But this summer, it's just been one thing on top of another and I guess it's all caught up to her.  After all the specialists looked her over and put their heads together, it came back to her heart.  She's been stable for three years (when she had the Fontan) and I have been able to focus on other medical issues, without giving much thought to her heart.  I really don't want to have to go there again.

So, on Friday night, I left the hospital at 9:30 pm.  We had one of our nurses that night, Harlie was ready for bed and I was tired.  And sad.  She was on 60% oxygen - too much to go home.

When I got there at 7:30 am the next morning, she was on 40% oxygen!!  Woohoo!  Now that's progress!  I think I blogged that I thought she was dry (as in dehydrated).  Well, they agreed with me and when they gave her more fluids, she did way better.  With her passive blood flow, she cannot get too dry.  So, hydrating her was the answer.

The cardiologist that was on that weekend came by to see us.  He walked in and said something like, "You have no idea how many people I've talked to about Miss Harlie."  And I said, "Now you know how I feel."

Let me see if I can make this simple... her blood flows like this... oxygen rich (red) blood leaves her heart and goes to her body, oxygen deprived (blue) blood returns and goes straight into her lungs to get oxygen and then goes to her heart to be pumped back to her body again.  That's not normal, by the way.  ;-)

He said that we have re-routed her blood flow and it doesn't work the way God and nature intended.  So, her body has, most likely, formed collateral vessels that carry blue blood to her heart.  So, the blue blood mixes with the red blood that just came from her lungs and it pumps a mix of the two, instead of just red blood.  So, that lowers her oxygen saturation, hence the need for additional oxygen.

To fix it, she needs a heart cath and the doctor will shut down the collateral vessels, which will stop the mixing of oxygen rich blood and oxygen deprived blood and allow the heart to just pump oxygen rich blood to her body.

Easy.  Awesome.  When can we do it?

Not until she's at her baseline best.  Which is not when she's on IV antibiotics.  I don't know exactly when that will be.  So, we are most likely stuck on oxygen until the heart cath.

So, which do we do first?  The jaw hardware removal surgery or the heart cath?  Unfortunately, the hardware removal.  Which was scheduled for November 20.

Well, in light of this infection, I asked her surgeon if she could move up that date.  She wanted three months from the date of surgery (July 3).  That puts us at the beginning of October.  I want the date moved up because I don't think we can risk Harlie getting another jaw infection.  The sooner that hardware comes out, the better, as far as I'm concerned.

Well, I got a call this week with a new date.  It is the absolute soonest her surgeon could fit her in - October 30th.  Crap.

So, now Harlie gets to miss Halloween.  And I get to miss it, too.  I know it's just Halloween and she doesn't even eat the candy anyway.  But, STILL!!!  I'm trying to not be sad about it.  So, I found myself saying, "I should be grateful" to another special needs mom friend of mine, and Susan said, "Grateful for what exactly?"  Good question.  Well, we haven't had to spend many holidays in the hospital, overall.  Not Christmas (and I'm not going to mention anything about her birthday since that is coming up soon).  But then I realized that in order to feel better, I had to think that we are lucky that we haven't had to spend Christmas in the hospital.

Who the hell thinks like that?  When something has bad timing in your life do you say, "Well, at least it isn't Christmas, so I should be grateful."  No.  But that's where I am.  How sad is that?!  Can you get much lower than that?

I love seeing how excited the boys are about their costumes.  And I loved that last year Harlie could pick out what she wanted to be.  She was excited about it, too.  Even though she gets nothing from the work of trick or treating.  Now, what am I going to do about costumes?  Let the boys get theirs and not let Harlie?  Let her pick one out and then she just misses the event?  I suppose I could let her wear it to the hospital or something.  So not fun.  Ugh.  I'm just bummed.  Really, really bummed.  It just seems that there's no letting up on the discomforts and sacrifices that Harlie has to make in this life.  So. Not. Right.

She had a dentist appointment today.  It was at a new to us place.  It was the first time a full (ish) exam could be done.  It was torture for her.  As is most of anything having to do with her mouth. She bled for hours afterwards.  The amount of times per day that we have to force something on her that she doesn't want or like is ridiculous.  And I HATE it.  And it is wearing on me, and my spirit.  I find myself thinking I don't know how much more I can take more and more often.  It's killing me.  And she's not happy about it, either.

Tomorrow won't be much better.  I have to get her up and out the door by 8am to go to some follow-up appointments downtown.  Luckily, I don't think there will be any pain involved.  But, it will be work and will take energy, which she doesn't have much of lately.  Me either, for that matter.

Okay, that's it for tonight.  I have way more to talk about it, but it will have to wait.

Thank you, as always, for reading and caring.
~Christy xo

6 comments:

Ann said...

You know, I've been saying "I don't know how much more I can take" a lot lately too. I told Jack's hospice team today that I think he might actually outlive me because I really don't know how much more I can take.

Sometimes it doesn't help one bit that someone else understands -- truly understands, how you are feeling. But, sometimes it does. I understand more than most.

Hugs.

Anonymous said...

hugs

praying for y'all.

:)

Sarah said...

I'm right there with you on the "I don't know how much longer I can do this". I know what you mean about how we feel we need to be grateful that at least it isn't this or at least it isn't that. But it's still hard. And it doesn't go away. The pain, grief, disappointment over losses and things that will never be...they never go away! How do we move past it when our spirit is failing? I agree with Ann. Sometimes it doesn't help to have someone else who knows. For me in this very moment though...it does help to know I have friends who get how I'm feeling. My husband can't comprehend and it's so hard to explain.... Lots of loves and hugs for everything that sucks!

Re Halloween, we've been inpatient for many holidays and Halloween a few times. Our hospital does an official trick or treat in the basement corridors. The different departments have competitions for themed costumes. The hospital is so very festive! We've actually gone when we aren't inpatient because Keturah loved it so much!

Hoping you can make it through just one more day...hugs!

Vicky said...

Christy - Just wanted you to know that I am thinking about you and Harlie and all you are going through. As for Halloween - why not celebrate early with Harlie? Let her wear her costume to school or something a few days before and some of the teachers can give her some treats - new pencil or stickers or something! She deserves something special like that! Just a thought. Hugs to you!
Vicky =)

ANewKindOfPerfect said...

Emily was inpatient for a number of Halloweens, and both Children's hospitals had a costume parade and Trick or Treating through the whole hospital. I know it's NOT the same, and it's not the point - the point is that this isn't right! But it can still be fun for her. And we spent Emily's last Christmas inpatient (well, her last Halloween, Thanksgiving, Christmas, Hannukah, New Years, Easter, Valentine's Day, etc) - it sucks. Plain and simple, it sucks. But we made it awesome because we had to. It is what it is. And it can always be worse, seems to be something we keep saying to make ourselves feel better! LOL

Susan said...

You can always find a positive if you look hard enough. But it's also okay to look at a crappy situation and acknowledge it. I hope you know that's why I said what I said. Having a surgical complication that means having to schedule an urgent surgery the day before Halloween is crummy. You deserve to be able to be home with all your kids. If you want to play the "glad game" I'm sure we can think up several other reasons to be glad about it, other than just that it's "not Christmas" if you like. ;)

I think there should be a new rule that no surgeries/procedures and hostital stays should include 1) Holidays 2) Birthdays 3) Anniversaries 4)Previously Scheduled Vacations 5) SN Mom Weekends

Hugs Christy!