Monday, April 20, 2009

The Latest...

I can't believe this, but it looks like she has pneumonia. Again. Isn't that just lovely. I say "looks like" because we haven't received the official word. And all of her symptoms are different than they were a month ago when she had it. So I think it's still possible it could just be a collapsed lung or something. Although her white blood count is pretty high (27), which indicates she's fighting an infection.

Last night in the ER, they gave her Tylenol (around 7pm). Then they started some IV meds during the night. The nurse just took her temp, and she does not have a fever, so that's good.

Dr. Jonas just stopped by to see us. He said that he wants to wait at least a couple of weeks for surgery. I asked him if it would be okay to wait a month. He said that would be fine. But we can't wait monthS (not that I wanted to). Now that we know what's causing her pressures to be high, we need to go on ahead and get that corrected sooner rather than later.

Now we are just waiting to find out more information on what's going on with her now, and the plan of action. If she has pneumonia and she's on meds, I'm hoping that they will let us take her home as soon as she can get her meds through her g-tube. Hopefully today or tomorrow morning.

Last night they wanted to draw more blood (hours after her awful IV experience). The resident said that the blood they took in the ER clotted. The lab wanted this blood for the blood bank so they could have blood ready in case they did the surgery. I asked her what the likelihood of them doing the surgery was and, of course, she said she didn't know. I find it so frustrating that the residents at night can't use some common sense. They are so afraid of making a commitment to a statement. She has a fever and it "appears" that she "might" have pneumonia, "probably". Nice. What in the world is a mom supposed to do with that kind of "information?"

Anyway, considering she wasn't supposed to be in the ER the night before surgery giving blood in the first place, why did they need it? The resident told me that the blood they took on Thursday is only good for three days prior to surgery. And having surgery on Monday was four days. But, she wasn't supposed to be here earlier than 6am, so what gives? Why take it at 11pm while she's resting soundly? Especially considering she's most likely not having surgery anyway!!!

So, I thought about it for a little while and when she came back to stick her, I said "no." I said it doesn't matter what they say in the morning, I am not comfortable with her having open heart surgery while she's sick. Besides, I know they aren't going to do it. Even if the resident says she doesn't know. I know. Maybe she'll know for the next patient. I just couldn't let her stick her for no good reason. I hope that one day Harlie will know I tried to lessen her pain whenever I could.

Anyway, hopefully they will round soon so Tom and I can make some plans. And then we'll take her home and we'll take a break from worrying about this surgery and hopefully, she'll be all better when we set the 4th date. It jut figures. She goes two and a half years without ever getting pneumonia and she gets it twice, one month apart during the Fontan scheduling. Talk about some luck.



Donna said...

Thanks for the update. I'm so sorry she's that sick again. I'm glad for your sake you're getting to take a month break from all of the scheduling and give Harlie time to really heal. Looking forward to seeing you back home soon - please let us know what we can do.


Anonymous said...

Ditto on everything Donna said!! So glad that you didn't let them stick Harlie again. Thanks for keeping us informed. Extra safe travels home.
We'll see you soon.


Heather said...

what a rollercoaster. thankfully, Harlie has a strong mama to stick up for her. and I have no doubt she knows it. travel safe and we'll see you soon.

Rene said...

Well, crap. Don't have anything else to say that would fit the bill. I'm sorry she's sick. I hope you will be able to treat her at home and she will bounce back quickly.

Tommy's mom

Anonymous said...

All I can say is that I am soooo sorry! You did the right thing by not letting them stick her with yet another needle. Hang in there! Love ya,


Sue Mitchell said...

I'm sure Harlie knows you're looking out for her and good for you for listening to your instincts and saying NO to that nurse. I think common sense and your motherly instinct was the right way to go. Good luck and hope you don't have to stay there long. Hope Harlie recovers very soon.

Anonymous said...

gosh, how frustrating for you guys! I hope Harlie is released and feeling better soon. Then hopefully you all can take some much needed deep breaths of the nice Spring air over this next month.