They moved her into a different room during the night. She's still a CICU patient, but I think we are in the PICU (pediatric intensive care unit) and it is a big room with six patients, separated by curtains. They have a pretty busy OR schedule and they have to make room for the kids coming up from surgery today.
When I talked to her night nurse late last night, she told me that Harlie signed for us and signed "hurt" again. So, she gave her more drugs. They really wanted her sleep comfortably all night. They certainly were not ready for her to wake up, that's for sure! I am very glad that she can communicate with them. I guess they would just go by her behavior and numbers, but it's still nice that she can say she's in pain so they can help her.
This morning they said that she almost pulled her ET tube out (breathing tube in her mouth) which would not be good. To explain a little, when she has heart surgery, her chest incision comes very close to her stoma (hole in her throat for the trach) and causes an increased risk of infection. So, they take the trach out, which means they have to intubate her through her mouth. Because of her jaw abnormality, she is a very difficult patient to intubate and cannot be intubated at her bedside (needs to be in the OR). So, her pulling it out would NOT be a good thing!
Evidently some time earlier this morning someone tried to put a trach in, but couldn't get it to go in. So, they called ENT to come and do it. The doc that came extubated her (took the breathing tube out of her mouth) and put a trach in. He said that her stoma had closed a bit, so he had to dilate it so the trach would fit. But he got it and now she looks a lot more comfortable. She was on a ventilator (which beathes for you) but they now have her on CPAP (which lets the patient initiate the breaths). I don't know when they'll take her off CPAP, but I bet when they do, she'll be even happier.
She tried to sit up again (right when we got here) and then wanted to roll over, but she can't sleep on her belly with an ET tube in her mouth! So, they gave her more drugs. Her nurse this morning (again, a familiar one, which I love!) said that Harlie laughs at the drugs they're giving her.
While it was nice to see her neck, it is much better to see her more comfortable.
Her bleeding is good. Meaning that she's not bleeding that much. They will take out the chest tubes when they stop draining. But they know that she already exceeded the limit, so she'll have them for at least another 24 hours. She is still on the pacemaker and they will continue to test her throughout the day to see what her heart does. They are thinking that her heart will be fine soon. She has 2nd degree heart block, but with her corrected transposition defect, she is at risk for developing complete heart block (for the rest of her life) so they are just being cautious. Which we appreciate of course.
Oh, during rounds this morning the doc looked her over and then turned to Tom (who was sitting in a chair) and asked if he was dad. He said yes, and she introduced herself and shook his hand. Then she turned to begin rounds. So, Tom said, "there's mom" and pointed at me (I was standing beside Harlie) and she looked at me and said, "Oh, I"m sorry! I thought you were a nurse"! (boy don't I feel like one most of the time!) I told her I get that a lot. haha
Last night, Tom and I went out for dinner. I know it may sound weird to leave her, but in our case, we know when she's in the CICU or PICU here that she is very well cared for. And with her being sedated (despite her attempts to fight it) it is the best time for us to get out of here. I know by tomorrow I won't be able to leave her. So, we figured we should take advantage of the situation.
We had a good night's sleep and woke early to go for a run. We drove down to the memorials and ran from the US Capitol Building to the Lincoln Memorial and back. When we got to the furthest point from the car (2 miles away) it started to rain (we have impeccable timing). And I mean torrential downpour. It was crazy. It was hard to see because there was so much water running down my face. Earlier we made the comment that we were surprised that there weren't more runners out. But that was probably because they all checked the weather forecast and stayed indoors. Oh well. Us dumb out of towners.
Well, that's it for now. They'll be more later!
Thank you,
Christy
8 comments:
I'm glad to see you guys had a chance to get out. It sounded like a good time to do it. It's interesting to hear how Harlie's ability to communicate plays into the picture. I keep waiting for her to learn the "get me the heck outta here" sign.
You know you all are in our thoughts. Hang in there!
btw...I will be coming back up to N Va. this week if you need anything.
Sounds like things are coming along fairly smoothly which is great! I saw the nekkid neck and got happy for a minute. It is nice to see it, but much better for her to be comfy. Hang in there Nurse, um, er, I mean Mom.
I have been praying for Harlie all her special life! I have said extra special prayers for this surgery and she has come through for everyone again. Take care Tom and Christy Love and in my prayers
Brenda Pinkerton
I'm breathing a sigh of relief to hear that things are going pretty good in terms of bleeding, pain control, you getting some R&R, etc. When Lucy was really sick, we also used to say that she's got the world's most expensive babysitters (i.e., PICU) so we might as well go out to dinner! I also loved the comment about the nurse--I used to get that too. Bet you can chew up and spit out first year residents, too! lol (gotta maintain a little humor in all of this)
Well, hopefully things will continue to improve for Miss Harlie, and WTG on the signing!! What a smartie!! love you guys! Sarah
I'm glad things went good, Harlie is such a strong little girl!!
Christy, You and your family are in my prayers!! Donna let me know Harlie had her surgery and I wanted to let you know that I'm thinking of you all. I will be in NOVA this weekend and if I can help in anyway, please let me know. Take time to rest while you can! Take care, Shannon
Still praying for Harlie. Hope she continues to get strong and heal.
Glad you guys got to get out and have dinner, it doesn't sound weird to me at all, thats the only free time hubby and I have alone and that hasn't happened in years. Take advantage while you can!
The part about them thinking you were a nurse made me chuckle. Thats cute.
All I can say is "ouch". Harlie is such a trooper! I'm glad things are going well so far, with no unique complications. It's good to get away ... no need to explain. Keeping you in my thoughts and prayers.
Ann
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