Post-Op Day 36

When days go by without me writing, it is hard to remember what happened and on what day. But writing everyday just isn't possible right now. I can tell I am feeling more run down each day. But I feel bad even saying that because I really cannot imagine how Harlie feels.

Even though she is doing great, all things considered, she is still so very weak.

Her lungs are still healing. And she's on a lot of oxygen.

On Tuesday, they decided to try her on trach collar all night, instead of putting her on the vent. So, Tuesday night was her first night without the vent in five weeks.  They also wanted to get her dressed since she's getting up for PT. So, I walked to Target and got her some clothes. I had none here from home.

I got her a Lego set while I was there.

Sally came up to visit Tuesday. And she brought me dinner (homemade meatloaf and sides) and a microwave. The story about the microwave is that the microwave in the waiting area of the CICU must be replaced. It is awful and tiny. And between the family refrigerator, and the yucky microwave, it makes eating here so much worse. So, I asked my social worker if I could get a new one donated to replace it. Next thing I know, Sally shows up with one. It was donated by our friends Aimee and Steve Connolly! Thanks Aimee and Steve! So many parents thank you!!

Sally and I walked to lunch at one of our local favorites, the Pub and the People.

When we got back, Sally made a deal with Harlie that we would do squats as long as she was working. We did a lot of squats. Harlie got a kick out of it.

On Wednesday, Brandy came to visit. For those that don't know, Brandy has been Harlie's home health nurse since Harlie was five months old.

ENT came and I did my first trach change since before Christmas. Can you believe that? Her trachs are supposed to be changed weekly. The last time I changed her trach was December 18th. Then, our local ENT changed her trach on January 8th. It wasn't changed again till her scope under anesthesia on February 1st. And that's when Dr. Preciado said he had to do the stoma revision and we scheduled it for the 21st. Crazy. Anyway, it was such a breeze to change. What a difference from the way it was! Ahhh, I can't tell you what a relief that is! Whew!

We had talked about transferring to rehab on Thursday. But, on Wednesday during PT, she had a bit of a rough time. Here is a clip of her working.

After she walked out of the room, she went about 10 feet and she desatted pretty bad. Mandy let her get back in the wheelchair and took her back into her room. It took about 8-10 minutes for her to fully recover.

Her chest x-rays from this morning (Thursday) looked a bit worse than yesterday's. So, maybe she just needs a little more time to adjust without the ventilator.

Because of that, and her high oxygen requirement, they want to give her a little more time before transferring her to rehab. So, the plan is that she will be moved to the floor tomorrow (Friday) and will stay in the heart and kidney unit through the weekend. And if all goes well, she will be transferred to rehab on Monday.

Dr. Preciado came by to see her today. He told me that he was in Brazil last week for a conference on complicated airways. He said he presented Harlie's case. He said there was a lot of discussion about it. In a weird way, that's pretty cool. If you're going to have a crazy airway, might as well have a lot of doctors talking about it. Seriously though, it is comforting to know that he seeks out other professional opinions. More minds...

Mary Ann is going to bring the boys up for Easter. We are still working on what we're going to do for Easter. But, at least the boys will get to see her and interact with her. I know they all miss each other so much. For five weeks, plans have been so unclear. Now that I have a better idea of where we'll be and when, I can finally visualize it, and I can't wait for us all to be together!! I think the boys will be so happy to see how much better she's doing.

I think I am finally able to breathe a little. So many things are so much better now.

I did this puzzle on Wednesday. I don't know who sent it to me, but thank you! It was a fun one.

And when I got back to the RMH Wednesday night, I got this package. I don't know who sent it to me, so thank you whoever you are! It has some great goodies and gift cards in it. Yay!

And I also received some tea and honey straws. Which I loved having the other night! So, thank you whoever you are!

I must say that we are the luckiest people to have the amazing support we have. I just can't possibly thank you enough for loving our sweet girl, and the rest of our family the way you do. So many of you go above and beyond for us and we are more grateful than words can express. I'm sorry I can't respond to all your comments and kind words. Please know that I love them and soak up the encouragement and love from each of you.

Much love,
Christy xoxo