Updates on Nolan

A little bird told me that Ronan was going to get to hold Nolan tonight.  I hope Ronan will fill us all in on whether that very exciting event actually transpired.

Nolan was holding steady when I saw him mid-afternoon.  Holding steady means he hadn’t had a “desaturation fit” in almost 24 hours.  His oxygen was fairly low (40-60%) and they were not having to give him extra sedation, though I think he’s still on baseline sedation.   They did turn his oxygen up while I was there because they decided to resuction and reposition him, but they were moving it back down when I left and I think he held stable after that.  Not very definitive news, but it’s the best I’ve got to offer…

Nolan is resting very soundly right now, with Kara soaking up his peaceful presence.  The majority of his repose comes from heavy sedation, fetenyl and verset every 2 hours and as needed if he gets upset.  The current plan is to keep him resting, not fighting the ventilator, so that his oxygen saturation is good and after his last dose of the initial course of steroids tomorrow, he can start growing, despite his sedation, and hopefully his lungs will grow with him.  So, no real ups or downs at the moment, just blissed out narcotic sleep, so continue to think healthy lungs, and grow grow grow.  Let us all be peacefully in repose, Sammy Davis Jr Jr.

I’m here to report that I don’t have any new news.  Which I think is good.  Last I heard, Nolan was still stable with oxygen at a reasonable level.  Sleep well, Nolan.  We love you.

Well, the “relaxing” part of the ride ended with a bang and we’re back into rapid ups and downs.  Last night, Nolan had a very difficult night.  He was stable when Kara and Ronan left for the night, but sometime in the middle of the night, his oxygen saturation dropped and they were unable to control it.  By the morning, when Kara and Ronan got a phone update from the nurses, they had turned his oxygen up to 100% incoming, and even at that level he was only able to maintain 80% saturation.  Kara and Ronan went to the hospital, and phone calls went out and a number of family members rushed to the hospital as well to wait for news.  By the time people started arriving, Nolan was back down to 40% oxygen and holding.

Apparently, this rapid improvement came about partly because they sedated Nolan pretty heavily.  He was very agitated last night during the crisis time.

This sort of crash is “normal” and they expect it will happen again.  They don’t know why it happens, though the consensus seems to be that it’s probably not an infection (they won’t know for sure until tomorrow).  His lung x-rays continue to show very unhappy lungs, but there may have been a slight improvement in today’s x-ray image.

Nolan has continued to stay stable for the last 4 hours or so, so we hope that this will hold for a while.  They were able to turn his oxygen all the way down to 35% at one point, but then they had to do a heel prick to get blood for blood gas tests, which caused him to desaturate enough that they had to turn the oxygen back up.  I think it has stayed in the 40s since then.

They have given Nolan his last dose of steroids now, so we are at the stage where we pray that he doesn’t backslide.  While he’s had a lot of ups and downs on the steroids, they have been able to keep his oxygen lower since he started the steroid course.  Keep your thoughts focused on helping him maintain those improvements.

I will give another update later today, even if it is just to say that all remains the same.  Thanks for all of your attention and love and caring.  I know it means so much to Kara, Ronan, and Nolan.  It certainly helps the rest of the family to know that so many of you are out there thinking of our little bug all the time, checking for news regularly (I wish there were more to offer!).  Over 100 different friends have now left messages on this website, and we know that so many more are quietly holding Nolan in their thoughts.  Thank you so much.

-Maria

Nolan had a rough night last night, lots of oxygen desaturation and fits of agitation, but this morning afternoon he has chilled out some and remains stable while on some sedative. The docs think he may have picked up an infection that is causing the desats and for the x-ray of his lungs to look not so good, so they have administered antibiotics just in case. At the moment, like so many moments, we are waiting to see what happens. Tomorrow is a big day because we will all be able to see if the steroids gained Nolan any ground in the lungs department. He is now being slowly tapered off the steroids with his final dose tomorrow afternoon. He is tolerating Karas milk and his helping has been doubled and will go up soon if he continues to digest and use her liquid gold. One doctor says we are on a plateau now with his lung disease, and we have to wait to see what happens next. Wait and be patient. Nolan is peeking out of his other eye now, ever so often. Take a deep breath and invision healthy lungs and quiet rest for baby Nolan.