We are still here. Lila is feeling a bit better though. Not so much suction and off oxygen finally. Unfortunately our old nemesis the feeding tube is back in. They may send us home with it. I really hope that this doesn't turn into a long term thing.This has been a really hard hospital stay, since Lila has been in here the neurology team has decided to take advantage and run a ton of tests. She had another EEG, a spinal tap, blood and urine taken, an ophthalmology exam, x-rays and more. The only good thing is that I finally feel like we are getting attention. Our neurologist has come up to see us every night and has been really helpful and available. The scary thing is that he is throwing out some pretty devastating syndromes. Her EEG was a little more abnormal (who knows what that means) but all the other tests have been coming back normal. There have been a lot of tears this week.
Lila is a sweetheart through it all. She has become a favorite of the nursing staff. They brought her a balloon. We love this little girl so much, she has a way about her of touching people's hearts.
4 comments:
My heart is just breaking for you that it takes a hospital stay for poor Lila for you guys to get the attention you need and deserve! I hope that she improves enough so that the feeding tube doesn't have to stay in.
what a sweetie. im so sorry you have been in the hospital so long. but yay for getting some more attention--finally! hope things get better and you can go home soon.
love you.
she looks beautiful in her good luck bow ;) I know that you will finally get some answers soon and what a lil trooper. love you!
you all have a way of touching people's hearts. Kirsti, much love as always. A million hugs (the good ones) from NC.
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