Tuesday, August 3, 2010

Another night...

and no "I love you".  At least she smiled more today.

We went to see pulmonary today.  That went fine.  She is definitely getting better now.  He was not concerned.

Since I have not blogged as much lately, I didn't tell you about Friday.  Harlie gave me a little bit of a scare.  She was just sitting on the couch (had not moved all day) and she was breathing pretty heavy and sweating!  And it was not hot in the house and she was sitting under the ceiling fan.

I ended up calling her pulmonologist.  And chatted with him a bit.  Her work of breathing seemed worse than the prior day (Thursday) and her sats were only in the high 60's, low 70's without supplemental oxygen.  He made me feel better by telling me he was going to be on all weekend, and that if I felt like she was getting worse to bring her to the ER and call him first and he would meet us there.

After I hung up the phone, her sats got as low as in the 50s!  I can't help but wonder about the accuracy of the monitor - but it wasn't acting funny, and when I put her oxygen back on it consistently climbed back up from there.  I just told myself that when I felt like I could not provide her the support she needed, I would take her in.

My reluctance with taking her to the ER was that I really did NOT want her to go through the trauma of having to go back into a hospital - unless absolutely necessary.  I knew they would put those monitors on her chest and that she would be miserable and scared.  And I did not want that.  So, I just carefully monitored her the rest of the night and by the morning, she was a lot better.

When we saw him today he said that I scared him a bit.  He also said that when it comes to kids with special needs, he goes with the mom and how she feels.  I love docs that think like that.  He trusted my comfort level, which I think is wonderful.

I very rarely call a doc with that feeling of panic anymore.  I used to feel that a lot when she was between 6 and 11 months old.  That was a hard, scary time (before her lobectomy, which really helped her a lot) and there were so many moments I thought that no one could help her or us - in our care of her.    I was scared a lot that summer.  And I really enjoy the many months that go by without feeling that feeling.

On Saturday, since Harlie seemed to be feeling better, we took the kids to Brown's Island for a Big Brothers/Big Sisters event.  They had a bounce thing there and the boys loved it.  Harlie actually wanted to get in so Tom went with her.  She ended up crawling into a tunnel and just sat there the rest of the time.  It is very clear that she listens to her body and doesn't push herself to play when she's not feeling up to it.  And even though I KNOW that she is doing great - all things considered - and I am so proud of her - I couldn't help but be a little sad to see other kids be able to jump right in and play.

Well that's it for tonight.  Thanks for reading!


Susan said...

Since Harlie is such a fighter, I'm really glad to hear you think she listens to her body. That's great because it's important while they are healing that they don't overdo it. I know her time will come when she'll be back runnin' around with the rest of them.

For now I'm just really glad you can manage things at home with some oxygen. I agree it's best to avoid going back to the hospital when you can, for her emotional sake.

Please give her a hug from us.

Anonymous said...

Harlie will know when she is ready to play. She is being very cautious with her body right now. You and Tom are doing a wonderful job taking such good care of her and her brothers. I am sure that everyday she is doing a little bit more. Hugs and kisses to all. Love Ron and Sue

Heather said...

you really are a good mom to her. and i love reading your stories. as alwasys, thanks for keeping everyone posted. even the small things about her accomplishments are a joy to read.

ANewKindOfPerfect said...

I love a doctor who listens to the mom, and knows to trust their instincts! I am glad she's feeling better and you guys got to go out and about. :)

Anonymous said...

just checking in on you all and making sure you are still doing good. Know that we are thinking of you. Mike and Marcy.