Sunday, March 30, 2014

Lung Details

I've been feeling blue these last few days.  And usually I don't want to write when I feel that way.  But, I'm hoping that writing about it will help me shake it.

Harlie had her CT scan on Friday.  The night before I told her that she had a doctor's appointment in the morning and that we would have to wake up early.  I don't normally tell her about just regular old appointments.  She must have noticed the difference and sensed that this was a bigger deal.  So, she started to cry - a real sad cry.  Ugh.  I told her that it wasn't that big of a deal and that I was going to be with her the whole time and that it would be over quick.  No over night, I said.  She cried for about ten minutes and signed "scared."  There are times I'm not that sympathetic, and tough love is the way to go.  But, this was not one of those times.  It kills me that she has to be scared so much.  And for darn good reason, too.  But, she eventually believed me, I suppose and went to sleep with no tears.

She's usually a BEAR to wake up.  I have often said that I have no idea what we're going to do when she is a teenager, because that girl will sleep past 10 am every day if we let her.  I got up at 4:15 am and got myself ready.  Then I woke her at 5:15.  I went in her room, put in her hearing aid and whispered, "It's time to wake up" in her ear.  And can you believe that girl sat right up?!  That is a FIRST for sure!  I guess telling her the night before was the right way to go!

Anyway, we left the house right on time (another amazing feat, if you know me) at 5:45 am and arrived a few minutes early for check in.  See?  I just haven't been myself, lately!

Then we hung out in the waiting room... for a long while.

She really cracks me up.  Despite the tears the night before, she was one happy little girl!

I suppose that the anesthesiologist looked at her chart before calling her back and ended up spending more time than originally planned going over her history.  I'd love to be a fly on the wall when a new doc clicks on her name.  Anyway, we talked and he asked the usual questions.  Thank God she has no issues with anesthesia.  Can you imagine?

They were so kind.  They wanted to let her fall asleep first before putting in the IV.  So thankful!  The reason she had to have anesthesia is because it was a CT scan with contrast (which requires an IV) and she has to lay really still for several minutes.  Considering there's contrast involved, it's not worth the risk of her moving.  I believe they can only give you so much contrast in a specific amount of time.

All went fine, of course.  I wasn't worried.  She woke up a little mad, though.  The nurse didn't apply pressure to her IV site long enough to stop the bleeding, so she bled through her dress.  That was very upsetting to her.  Blood got all over her other hand and she kind of freaked out.  Of course I had extra pants, but no top.

We left the hospital around 9:30 am.  As we were walking out, I saw Harlie's nutritionist from when she was a baby.  It's always good to see her.  We chatted a bit.  And then Dr. Williams came up to say hello.  He was one of her PICU docs from back in the fall when she had the infection in her jaw.  He didn't have to stop.  It wasn't like we passed each other and he saw that I saw him, so he felt like he had to stop.  I didn't see him and he could have walked right on past without me being the wiser.  But, he stopped.  Isn't that so nice?  He asked how she was doing and what was going on.  I gave him a very brief update.  It is very nice to see friendly faces there.  And I always find myself surprised that people remember us.  But, I'm told Harlie's pretty hard to forget.  It's so funny what I find to be normal.  And to others, she's so unusual.

Anyway, I took her straight to Target to get something for being so brave.  If she could eat (or liked to) I would take her for ice cream.  Oh well.

I don't know when I'll hear the results of the CT scan.  I hope this week.  I hope that it will tell us something.  I don't think I ever told you about her appointment with her pulmonologist a few weeks ago.

Here's the recap.  We saw him.  He had already spoken with her cardiologist (Dr. G) and the head of the radiology department about what tests she should have.  I love it when they come in prepared.  He said that the best test would be a cardiac MRI.  Of course she can't have an MRI because she has a pacemaker.  No magnets can be near her.  So, no MRI.  I knew that was going to bite her in the butt one day.  We chatted some more and I wanted some clarification on what I was thinking.  I've been asked questions by family and friends and I wanted accurate answers to give them.

1.  Are you happy that it's not her heart that's causing her oxygen requirement?  No.  You need both organs to live.  They are both important.  And it seems that there are more options when it comes to a heart.  Plus, one can get a heart transplant and go on to live a long, good life.  It is not the same with the lungs.  How many lung surgeries have you heard of?

2.  Can she have a lung transplant?  No.  A lung transplant is trading one disease for another.  It isn't a cure - ever.  And it only buys you time.  Like five years.  If we have to consider a lung transplant, we will be very sad people.  That is a terrible position to be in.  I really can't think about it.

3.  If her lungs just don't work right anymore, is there anything that can be done to "fix" them?  No.  Once all the parts in there stop working, they are done.  No fixes.  Refer back to question #1.

4.  Can she live with just one lung?  Yes.  You can live with one lung.  Clearly her heart makes it more complicated.  But, it is "believed" that her remaining good lung could handle the blood flow.  I don't think there is another person walking this earth like Harlie, so it's hard to say for sure.  The obvious negative with relying on just one lung, is that you only have that one lung.  So, when she gets a respiratory illness, it will affect her greatly.  And her physical activities have to be adjusted accordingly, meaning no contact sports or being on the top of the cheer leading pyramid.  Those are his words, not mine.   Because I always assumed those were out, even with both of her lungs.  She can't even walk around the block.  I love how both of her doctors went straight to, "Well, she'll never run a marathon."  And that's said like who the hell wants to do that anyway?  

Um, me?

So, no contact sports - fine.  No cheer leading - fine.  I don't want her to wear make up anyway.  I hate that they have little girls do that.  No running?  Ugh.  Honestly, I knew that all along.  That's no surprise.  Heck, she can't even walk around Target or the grocery store.  I don't know what we're going to do when I can't put her in the cart.  Anyway, it does make me sad that she will have all these "nos" and "can'ts" in her life.  As parents aren't we supposed to tell our kids they can do anything they set their mind to?

And the worst thing about having one lung?  If there's trauma (like in the activities mentioned earlier, or a car accident - which would be the most likely for her) and her lung collapses or is punctured, she's done.  Meaning death.

While discussing what tests we should run to confirm that her right lung has been damaged beyond repair, Jim came in to test her CO2 levels.  The two of them started talking about how a certain test would be done with a patient with a trach and Jim asked Dr. Schmidt, "So, what are you going to do?"  And Dr. Schmidt said, "Whatever Mom tells me to do."

I had to laugh!  I love him!  I immediately thought of this thing on Facebook that was going around.  It said something like "You know you're a parent of a medically fragile child when..."  And one was "when you tell the doctor what to do."  Too funny.  Another one was "when you take care of other things before you take your child to the ER."  I told Dr. Schmidt about it and said I may or may not have taken a TRX class at the gym before taking Harlie to the ER.  We had a good chuckle.  Oh, the things I find amusing....

Anyway, he said he would have to do some research and call me later.  Which he did.  He spent a lot of time going over her history, and called me the next day.  He said that they want to rule out a collateral vessel(s) before doing anything else.  I suppose that could be a cause for her poor sats coming out of that lung.  He also said that after talking with some other doctors, they are all in agreement that they want to try to save this lung.

The first test was this CT scan with contrast.  We'll see what information it provides and then go from there.  In discussing the kinds of tests she needs, Dr. Schmidt said, "Ideally she would need a _______ (I can't remember which test it was) and she would need to hold her breath like 20 times in a 45 minute time period (or something like that).  I looked at him and said, "Let me tell you what would be ideal."  He totally got my humor.  We had another good chuckle.  Then I told him that I don't think she knows how to hold her breath.  So, that test is out for now.

So, in summary, here is where we are with her lungs...

As she is right now, with a full, good left lung and one remaining lobe "limping" on the right:

  • She needs oxygen.  I can't believe it's been almost 16 months of oxygen 24/7.  I just can't believe it.  
  • She has a hard time trying to speak.  When you talk, you hold your breath.  She can only pronounce a few syllables before she has to take a breath.  She just doesn't have the lung capacity to hold enough air.
  • She can NOT tolerate any exercise.  And I don't mean exercise like you go to the gym to do.  I mean just normal, walking around kind of exercise.  A couple of weekends ago we had a friend over and his kids.  Harlie wanted to play in the backyard with them and so I let her come off the oxygen for a bit.  After some walking around I could hear how hard she was breathing and saw how blue her nails were.  I checked her sats, and they were 71.  That's just terrible.  Terrible.  She can't even play.  Kills me. 
  • Last night (really, this morning) she was awake.  Maybe she had a bad dream.  Tom said he had to get up to drain the water from her tubing (condensation from the humidification) and she signed "scared" to him.  A little while later, it had to be drained again, so I got up.  This was about 4 am this morning.  She was still awake.  She signed "potty" and disconnected herself from the oxygen and the pulse ox and went in the the bathroom.  After she was done she signed "Mommy's room" and went in our bed.  She has never been able to sleep in our bed.  Never.  After a minute of letting her lay there, I held her tubing up (showing her it needs to be connected) and she sat up.  I carried her to her bed.  And when I hooked her back up, her sats were 77.  In a matter of five minutes, her sats went from the low 90s (on oxygen) to 77 (no oxygen) and she barely walked at all.  I carried her back, even!  

I'm hoping that it's something easy and simple (like collaterals) causing her low sats.  But, clearly, I would have to say that's unlikely.  I am going to continue to hope.  But, I know in my heart that we might seriously be disappointed.

My thoughts have been heavy these last few months (or 16).  I don't want her to lose this lung.  But I can also see that as it is, it isn't doing her much good.  The whole thing just makes me sad.  She's seven.  How many lives does this girl have?  I can only surmise that if she has to have that lung removed, that living with her one lung must, in some way, reduce her life expectancy.  It has to increase the risks in every way - infection, illness, collapse from anesthesia, etc.

Obviously I can't let my thoughts go there.  But, sometimes I can't help it.  I try so hard not to worry.  But, what mother doesn't?  And these worries aren't crazy, out-of-the-realm-of-possibility worries.  They are very real.

And when I can't sleep, I start to think of living with this oxygen.  Will we know more about what to do before summer?  I can only assume that she'll still be on oxygen when the pool opens.  What then?  Can I let her go in the water with oxygen?  I think the answer is yes.  But what about the tubing?  That can't be safe for other kids.  What if they don't let me put her in the water with the tubing?  How can I possibly NOT let her go in the pool?  Seriously, I can't even think about it.

The kicker to my blues yesterday (it was a bad day) was that we couldn't take her to the movies.  Tom took the boys and I stayed home with her.  She was pretty junky and required a lot of suctioning yesterday.  There's no way I can take her to the movie theater, on a rainy Saturday, when I have to suction her a lot.  While she would be fine, the suction machine would be a major distraction (annoyance) to other movie goers.  The fact that she has to miss out on so many normal activities (and knows about it) just makes me mad.

Anyway, I have to stop now.  I hate complaining about this stuff.  It doesn't do anyone any good.  And I think I might feel a bit better now that I've gotten all that off my chest.  I'm sorry if you now feel worse!!

I will let you know what I find out about the CT scan as soon as I hear.  As always, thank you for reading and thinking about our sweet girl.  You get me through these tough times.

Much love,
Christy xo


Janet Callahan said...

Oh Christy, this sounds hard, no matter how it plays out.

I will say that the oxygen get used to it. At home we have always had looooong tubes - 50-75 feet - so that the kids can go anywhere in the house. And we started taking them out on long tubes too, so they could explore the yard and swing (and we followed them all over the playground, up and down the play structures, with a shorter tube and a tank rather than get it all tangled up.

We never did the pool with a trach, but we did plenty of baths, so I bet you could still do it if she stays near the side.

And, FWIW, Alex is 45 pounds and often gets put in the basket of the shopping cart for his own safety and everyone's sanity. Many places now have carts with seats for bigger kids too.

Tom Boyce said...

Christy, I only know you from the Facebook world, but before I say anything else, want to say that I think you and Tom are amazing. People always tell us that they do not know how we do it with Tommy. I see you and Tom posting about running and biking, and pictures of you with friends and think how do they have the energy. Like Janet said, and you know deep inside, you adapt to new norms. While I pray that they will find answers that can reduce the oxygen requirement, if that does not happen, you will adjust to your new norm. Seriously, if you polled most medical professionals, do you think they would say go ahead, let her go in a pool? Probably 90 percent of the trach parents would think we were crazy for letting our kids in a pool. You or Tom will figure out a way to make it happen. Maybe you need to be closer to her with a tank.

I don't remember if Harlie is vented at all or not. I also don't know what her lung issues are, but Tommy's pulmonologist always tells us Tommy should not be able do as good as he does with the lungs he has. He is ventilated at night and as needed during the day. He often needs recharge when doing physical activity, and it is amazing how he can go from sounding terrible, cold but not blue finger tips to being back in the game with a little vent brake.

I know it is hard to not let your mind into that place where we all have gone. The when and what if place. I think we all know someone who has left too soon. Sure, there are some limits, but continue to figure out how far you can push those limits. She can't run a marathon, but does she want to? Even if she did want to, something tells me you and Tom would make it happen. Find ways to post more if those smile pictures and less of the "really, you ruined my dress for this" pictures.

Susan said...

Personally Christy, I think you should never apologize for a downer of a post. You and Tom are amazing, the way you live your lives and all you are able to do. Your sense of humor and the grace with which you move through this life. But people need to see the other real side of this too, the heart breaking side, from time to time. Love you so much! And love that sweet Harlie!

Ann said...

Ditto what Susan said. Love you.