They weaned her from BiPAP to CPAP. Or maybe that happened the day before yesterday? I can't remember. Not much else happened, just a lot of hanging out, waiting for her to keep getting better.
Maggie and I must be drained, because we ended up sleeping in Harlie's room for over two and a half hours!!! We were OUT. Then our nurse woke us up to tell us that we had a visitor. Woohoo!
My friend, Michelle, is from Massachusetts and just happened to be visiting her parents. She traveled an hour and a half to get here to see us. Isn't that so nice? Michelle is a special needs mom, too. It was so great to see her! Thank you so much Michelle! You totally brightened our day!
We all left together when the night nurse got there. She was the same nurse as the night before, so we left earlier than usual. I am not a fan of eating dinner at 10pm, so I wanted to have dinner earlier. We went to Church (an awesome restaurant between here and Fenway). We had a wonderful dinner (I got the softshell crab special and Maggie got duck) and then they told me that it was on our friends Mike and Laura! Seriously. How great are they? Thank you so much Mike and Laura!
Post-Op Day 10 - Friday
She's definitely feeling better today. She's been way more active and playful. They weaned her CPAP settings down and they put her on trach collar for about two hours. Her work of breathing increased. Then they put her back on CPAP for most of the afternoon. It is now 5pm and they just took her off CPAP again to give her another go at the trach collar for a little bit. They are going to continue to do this (it's called sprinting) for the next couple of days.
They mentioned doing a bronchoscopy to get a closer look at the infection if she can't come off breathing support soon. It's a procedure under anesthesia and it does have it's risks, so that will be more of a last resort if she can't come off the CPAP.
Seeing her be so playful makes me think (okay, hope) that she will be back to her old self in no time. But I have to be patient.
Today has been a very busy day. With Harlie being more herself, she is a lot more demanding! Look at how busy she's been today:
|An art therapist came to see her today.|
|She colored thanks to Lynda Reider!|
|And played with this Ariel play set thanks to Kim Smith!|
|And she brushed her teeth. Like four times.|
We got a wonderful care package from Kim. There is a picture of Kim and I in this post. And there are pictures of Kim's daughter (Adelynn) and Harlie in this post. They were in the hospital at the same time in March 2012. Kim's daughter is a heart kid, too and her and Harlie have the same heart surgeon. So, she sent a well thought out care package, complete with low calorie snacks, toys for Harlie, and the best part - Ziploc bags! I always wish I had remembered to bring Ziploc bags! They are so useful for everything! And you don't notice how often you use them until you don't have them available. So you could totally tell that she's spent some time in a hospital, too! Adelynn just had her Make-A-Wish trip to Disney. She had Ariel sign the card. Isn't that the cutest? While Adelynn was at Disney - she still thought of Harlie! What a sweet, mature little girl!!
And we had ANOTHER surprise visitor!!!
|Chris Cousins and Harlie - all smiles!|
Chris lives in Richmond and travels a lot for work - often to Boston. This time he went to Maine, but stopped in to see us on his way to the airport. He brought me strawberries and apples and Diet Coke and he brought Harlie a cute little bear. He also said he had to deliver 15 hugs from our friends back home. He follows instructions well and made sure to give me all 15! It was hysterical!
Then me, Maggie and Chris went to lunch. And he bought it for us. Isn't he wonderful? Thank you Chris!
And as if that wasn't enough... I received this today:
A Life is Good t-shirt from my dear friend Ann!!! This shirt is so awesome! You look at breathing a lot different when your child has a trach. Thank you so much, Ann! I will be wearing it tomorrow! Ann started the Willow Tree Foundation and sells these awesome necklaces:
|Ever bending, never breaking.|
How awesome is this shirt since it has the tree and the word "breathe" on it? You can order this necklace from her blog.
Seriously! We are so spoiled! I hope no one is feeling sorry for us. Because we are so loved and well cared for!
The only bad thing about today is that Maggie left. :-( But not without some photos first.
|Maggie and Harlie.|
|Me and Harlie|
Wow! That's a lot of pictures! You can tell things must be looking up! And a few of you mentioned on Facebook that you can already see a difference in her jaw. Her surgeon came to see her a couple of days ago and said she could already tell, too. We've turned her screws for nine days now. Which means it should have come out 9mm. I still can't see it yet. But I am patient. And Harlie is so strong! She definitely fights the turns - but then she realizes that there's no use and lets me do it. I know it hurts her, but she is getting so good about it. So far, I think turning them two times at once in the morning and then one time at night is working well. I can't bring myself to turn them three times in a row. And by the night turn, I can tell her "just one turn, Harlie and we'll be all done!" She's really done great. And she's only getting pain meds an hour before the turns (which means twice per day and one time during the night). She is something!
Okay, I think that's it for this post. We are doing really well. So, please don't worry about us. I do miss home. It has now been two whole weeks since I've seen Murphy and Cooper. And that's definitely hard. But I think I can see the light at the end of the tunnel now. We are getting there - slowly but surely.
Thank you so much for the love!