Quick Update. Oxygen. Ugh.

I'm going to try to make this quick... it is already super late and I have another long day tomorrow.

A couple of posts ago I mentioned that Harlie had been coughing up some bright red blood and blood clots. Well, I ended up emailing her pulmonologist.  He was thinking maybe it was bronchiectasis and suggested a CT scan of her chest.  That is now scheduled for June 18.

Since then, the blood has come and gone.  And then partially come back again.  He also offered antibiotics.  But, since she was acting fine (blood was the only sign that anything was amiss), and we haven't confirmed diagnosis, I really was hesitant to start her on antibiotics.  She's been on so many.  And they usually wreak havoc on her GI system.  So, I held off, waiting for another sign to tip me in that direction.

Sunday morning was kind of rough.  She had a really barky sounding cough. She kept on pointing to her trach (sort of like she does when she's telling me she needs to be suctioned).  And she went around and opened all of her drawers with medical supplies in them, clearly looking for something.  She has never done that before (except to get a q-tip out or something).  I wondered if she was trying to tell me she wanted a trach change.  Maybe her upper airway was swollen, reducing her air leak around the trach, thereby reducing her normal air flow.  So, I showed her a new trach and she said, "yea" and then went and laid down on the bed so I could change it.  Crazy!

She was fine the rest of the day. But, Sunday night, her sats started to drop while she was sleeping.  We went on ahead and turned on the oxygen.  She was wide awake at 4am and there was a problem with the equipment.  So, I had to get Tom up to help me figure it out.  We're pretty positive that she never fell back asleep.  She was up way before her normal time and she was itching to get out of bed.  She was playful, happy and ready to go to school.

But, she seemed tired once there.  And she had developed a wheeze when inhaling.  That you could hear while standing next to her.  So, I went and picked her up from school and took her to see her pediatrician.

I brought him up to date and he agreed with my decisions so far.  He said she didn't seem sick to him at all.  Just that her upper airway sounded swollen (like croup) and that I should see how her pulm feels about steroids.

So, I emailed him again and he said if she seemed well enough to go to school, he wants to hold off on the steroids.

That was on Monday.

Today (Tuesday) I had to work REALLY hard to get her out of bed.  Harder than usual.  And when I laid down on her bed to keep her from getting back in it, she laid on the floor.  Hmm.... I gave her a few more minutes and then checked her sats since she had been off oxygen for a few minutes.  They were low.  Too low for me to send her to school without oxygen.  And I only have two tanks.  So, I kept her home.

This is so frustrating.  She really seems WELL based on her behavior and energy level.  She had a great session with the HI teacher that comes to our house weekly.  Cheryl said that Harlie was so engaged today! So, how sick could she be?

I asked her if she felt good or well and she answered, "well."  Then she signed "better."  So, I took her off the oxygen so we could all go for a walk with the dog.  There is something about that activity that I love.

We took Rooney off his leash to let him run around a bit and Harlie got out of her chair and "ran" around a bit, too.  She seemed perfectly fine and well, and was super playful and happy.  But her nails were kinda blue.  We didn't take the oxygen with us.

Since Cooper rode his bike without training wheels (he just learned a few weeks ago and hasn't been able to ride lately) we went to Bruster's for ice cream.  Harlie licked/ate more of her ice cream cone than ever before.  Maybe 10-15 licks instead of her normal 2.  So, again, how sick can she be???

We got home and her sats were in the low 70s.  Ugh.

So, now we have pretty much the same situation we had in the winter.  She appears to be fine, yet her sats are in the tank.  What gives?

Well, no one knows.  Her pulm told me that a chest CT scan is the equivalent of 50 chest x-rays.  Considering she just had a CT scan a few weeks ago, that seems like a lot of radiation in a short period of time.  So, since the blood appeared to be going away, he was thinking it wasn't worth the radiation.

However, now I am thinking it is.  This whole oxygen thing while appearing to be perfectly fine is really bothering me.  Is there something else that's causing this that a CT will show?  She hasn't had a chest CT in years and years and years.  It might be helpful to see what's going on in there.

But, unfortunately, that's not going to help her get to school - and stay there - for her LAST week!!!  It kills me to think she could miss the last freaking week of school.

Terri (her nurse) is off tomorrow.  So, now I'm trying to decide what to do with her. Take her with oxygen?  Keep her home?  I DON'T KNOW WHAT TO DO!!!  There is no easy answer.

I guess I'll have to wait and see how she does tonight, and how she looks/acts in the morning.  I am not a happy camper right now.  I just want her to be well.  And if she's not, it would be kinda nice to know what's going on so we can try to help her.  I'm so over living in the dark.

Her pulm prescribed a new breathing treatment.  But, I didn't have it until right after I gave her her normal breathing treatment.  So, now I can't give it to her until morning.  I hope it does her some good.

 Okay, I am falling asleep while trying to write this.  I will try to update again tomorrow...

Thanks!
Christy xo