Today was busy, as expected. Harlie’s CT scan was in the morning and she did fabulous! It was with contrast, so they had to plug it into her IV. Well, Harlie is very protective of her IV hand, and fought them pretty hard. The lady asked me if she was going to hold still for the CT scan.
Do I look like I can predict the future?
How the hell am I supposed to know? That’s totally what I wanted to say to her, too. But, I didn’t. I guess Cooper gets his politeness from me. I just told her that I didn’t know. Duh.
Then she went on to explain that if they give her the contrast, and she won’t hold still, we will miss our window of opportunity and we’ll have to wait another 24 hours to try again.
So, in other words, no pressure.
Geez, lady. Have some compassion! She’s five and she’s not doing it on purpose! So, I did my best to explain to Harlie that it won’t hurt and to just hold still and it will all be over quickly. It’s the same spiel I give her for most things hospital-related and it rarely makes a difference.
But, she actually held perfectly still and they were over in way less than the estimated 10 minutes. That’s my girl!
Unfortunately, I was unable to coordinate the information to include the jaw CT scan for the team in Boston. Which means that she'll have to have another CT scan with contrast in the next several months. Bummer.
Then later she had x-rays and an EKG (which she HATES because of all the stickers, of course).
|Does she break your heart, or what???|
After that, they did labs. Luckily, they were able to get the blood they needed from her IV. But then while fooling with it, it blew. So, we are trying to get them to wait on an IV until after she’s had versed and something via her trach to put her to sleep. So, we’ll see. It’s now after 10pm and I think it’s just cruel (not to mention that it most likely causes post traumatic stress disorder) when you wake up a sleeping child to start an IV. And if it doesn’t cause it in her, it causes it in me. I don’t want to have to wake up to that crap, either.
I also asked them to not do vitals every four hours as ordered. I just think it is unnecessary to wake her up when she’s perfectly fine and healthy. So, they are going to skip the one in the middle of the night.
At 6am they are going to do another chest wash (she just did one at 10pm). They wash her chest with something that makes it super clean and reduces the risk of infection should they have to do a sternotomy (open her chest).
Which, reminds me… Spoke to Dr. Jonas today and gave consent for the surgery. He said it is a 50/50 chance that the leads will work and they won’t have to open her chest to replace them. Clearly, I am hoping and praying that they won’t have to open her chest to replace them. That definitely changes her recovery drastically. But, for now, I have hope everything will go great and that won’t be necessary. He said that it could take one hour or it could take four hours.
Anesthesia time is 7:30am.
She is now showered, and in bed. Earlier tonight I took her off the monitors and we went to the playroom. She played for a little bit and then signed “car” which means she wants to leave.
While in the playroom the pacemaker nurse practitioner came in to talk to me about the device. Did you know that she has to be seen by a pacemaker doctor (?) once a month for three months??? Geez! Then, after that, she has to be seen every six months – forever! They have to monitor the power and usage of the device so they know when the battery needs to be replaced (depends on how much the pacemaker is used, but it could last anywhere from 4 to 8 years, I think).
Okay, fine. More doctors, more appointments. Sure, whatever. But, did you know that she cannot be around magnets? SHE CAN’T PLAY WITH MAGNETS. Not even the ones on your refrigerator. And not the ones that her class just did a whole little study on, either. Grrrrr!
And that just pisses me off. Someone please tell me how the hell I’m going to explain that to her? Especially when they are learning about them at school?!?!?! Where does that leave her?
And that just goes to prove it is the little things that mean a lot in life. Like the ability to play with magnets. Ugh.
Okay, it is late. It was a long day and I need to get to sleep. I don’t know what time they will come and get her (probably before 7am) but I need to get up and showered and ready before that.
Oh, real quick, we had another hospital milestone today. Harlie ate lunch by mouth – pureed spaghetti and peaches with very minimal resistance. That was pretty awesome.
Thank you for all your thoughts and prayers. They are so comforting and I really appreciate it!