Sunday

More of the same for Haley-bug today. I will start with the cons and finish with the pros.

Cons: (1) This evening Haley had 3 seizure like events on her EEG, the longest one lasted 4 minutes. Thankfully they were not clustered (worse) but were spread out (better). They have now started her on an anti-epileptic called Kepra and she hasn't had any of these events since. They said that while these seizures are a big deal and we would prefer to not have any seizures, they are also somewhat to be expected and that's why they ordered the EEG. Basically, they're not surprised. They also said that most likely she will stay on anti-seizure medication relatively long term now. (She will go home on it, and who knows when they might stop it?) (2) Her blood pressure is still all over the place. One minute it's high, the next minute it's low. They keep having to turn her various meds on and off, adjusting them, etc. They said this is also to be expected after surgery and after arresting. It's definitely keeping the nurses hopping. (3) No news at all from the neurologists today, besides the seizure activity. While this isn't actually something bad that's happened, its frustrating and stressful. A lot of 'hurry up and wait'-ing. They've pretty much gone on strike about making any comments about anything other than seizure activity. Tomorrow around 1 pm she will have completed her 48 hours of EEG, so we are hoping someone will finally come talk to us then, even if it's just to say they think they need to continue to monitor her. It's frustrating to get so little feed back on something that is so important. (4) Her platelets were better this morning but then randomly became low again. She had yet another platelet transfusion and hopefully they'll be able to keep themselves up soon.

Pros: (1) They took 2 sets of lung x-rays today, and this afternoon's showed improvement from this morning's! Clearly they still aren't good, but they're better. She still has some areas with small amounts of fluid on both sides of her chest, but they're not too bad and the chest drains appear to be working fine. There have been areas of air in her chest (not in her lungs which are obviously supposed to have air in them, but outside of her lungs) and those appear smaller! (2) She has had some times today where she has been off her epinephrine, and in fact she has been off it for a couple of hours as I write this. We might go back on it, but it's great that she is getting a break from it for a little bit. It's more of a 'rescue drug' and I pray it means we're making progress in the right direction if she doesn't need it constantly now. (3) Her swelling has gone down a little bit this evening - she's urinating more - and you can actually see a little bit of her chin peeking out! Her eyelids look a little less swollen and they can actually open them now to check her pupils. Coming along with this, her color looks a little better too. She's not quite so violet anymore. (4) Finally, and what is thrilling to me, I feel like her stats get better and her numbers respond when we hold her hand and talk to her. It may just be my imagination, but I think our little Bug is glad to have us here, helping her the only way we can by loving her. And of course, she loves it when we tell her she's pretty. ;)

P.S. Happy Birthday Katy K, we love you! Thank you so much for spending your birthday hanging out in our CICU room with us, you're the best.