thought we’d disappeared?
We’re back.
Nolan is stable, hurray! This evening, his oxygen level had been turned up a bit but it may already be back down again — they were headed that way. He has been holding in the 40s and 50s lately, I think. His lungs are stiffer now that he is off the steroids, so they have had to increase the pressure on the ventilator and overall the numbers aren’t quite as good as they were last week, but that’s to be expected and it is not the post-steroids crash we are (still) hoping to avoid. We are basically in the same holding pattern as we have been, which is really a good thing, because right now a dramatic change would likely be for the worse. It’s the nature of this kind of chronic lung disease that it won’t get better suddenly.
This morning they were concerned that Nolan’s head was swelling, which could be a sign of hydrocephalus or more bleeding (neither one is good). They did another ultrasound and it showed neither of those so we had a happy jig after we let our breath out again. There’s still some chance that either hydrocephalus or a spread in the bleeding is occurring, but I don’t think they’re particularly worried about it now. More likely that it is a more general post-steroids fluid gain. Anyhow, it is always nice to have a test come back with fairly unequivocally good news. [The bleed which showed on the first ultrasound is still there, but hasn’t spread. I don’t know when it will go away, but not for a while, so it has become part of our baseline.]
Kara was admitted to the hospital today for a blood clot in her leg. She’s doing fine, especially now that she knows that they don’t have any problem with her being up and about and visiting Nolan while she’s admitted. She’ll probably only be there overnight, so by the time you read this, she may be out already. She may be on medication for a while, but she won’t need to have surgery or anything invasive as far as we know. The doctors expect the meds won’t be a problem for Nolan via Kara’s milk, so he will continue to get his magic elixir which is of course a great thing.
Ronan is super-husband-dad and that’s the whole story.
Love, prayers, and lotsa super-stress-reduction vibes for the beautiful family, please! Thanks for keeping up the comments despite our posting hiatus. You busted through the 200-comment mark over the weekend and we love you for it. Your support holds us up. Thank you.
Tuesday, October 10, 2006 at 9:27 am
We’re so glad things are going so well. And since we’re in Spain, land of the built-in nap, super-stress-reducing vibes are our specialty at the moment. Ronan being superdaddy even under these circumstances is no surprise. Are there vibes specific to blood clots? We can send those as well. Thanks for keeping us part of the circle.
peter y paco
Tuesday, October 10, 2006 at 10:41 am
Hey y’all,
I’m glad to hear that things are looking a bit better. The news regarding hydrocephalus (was that not also the name of a character on Sesame Street)& cranial bleeding was especially encouraging. I love y’all & am cheering for Nolan every day.
LaRue
Tuesday, October 10, 2006 at 3:01 pm
Thanks so much for the posting, Maria. I nearly die when I don’t hear, though I know it is a challenge to keep the news posted when you are all so much on guard at the hospital. I guess we just don’t want any news, right? Then things are stable and moving forward incrementaly.
We love you all.
Margaret
Tuesday, October 10, 2006 at 5:39 pm
I am so glad to hear from Maria again, although I tell myself no news is probably a good thing. I check this website so often, it’s crazy. I continue thinking of you all so much! Sounds like things are good for now. I’ll keep you in my prayers. Love to Nolan and his wonderful family. Y’all are fortunate to have one another close by!
Alice
Tuesday, October 10, 2006 at 8:16 pm
Hello to the fam–
Kara, I hope that you are resting at home, at Nolan’s side, with Ronan and I hope that your cells refrain from creating any more clots. Shannon is in California this week and I know he is missing this forum. Thanks for the update Maira, so I can share news with Shannon. Peace for the evening and the ensuing days creating opportunity for growth and sustainability. Love, Amy
Tuesday, October 10, 2006 at 9:24 pm
Maria these posts hold us up as well - Sounds like all of us are holding tight together in a big circle of love for Nolan, Kara, Ronan and your whole family. We do check in more often than you can imagine ( I’m starting to feel like I know many of these family friends I’ve never met) and it is such a great feeling to read all this love too and to see a new post up with information that lets us know how to direct our love -
It is there so strongly.
Loving all of you - Heather
Wednesday, October 11, 2006 at 12:19 pm
I continue to keep baby Nolan and all your family in my heart and prayers. karen