Monday’s update
This update covers yesterday only, so it’s already old news. Sorry about that, but I don’t yet have any news for today and I wanted to go ahead and get something up on the site.
Sunday night was a very rough night for Nolan. Kara and Ronan stayed at the hospital all night because they were very concerned about Nolan (they did sleep, but they wanted to be close by so they didn’t go home). As I understand it, the primary concern through the night was Nolan’s sensitivity to environmental stimulation.
Oxygen saturation in the blood is a marker for the immediate effects of stimulation to a baby and how well he’s tolerating pokes and prods. In the NICU, stimulation includes touching from visitors, moving and blood draws by nurses, alarms from equipment (his and other babies’), other noises, and light. Everytime Nolan is moved or has something done to him, you expect his oxygen saturation to drop for a short while. Oxygen saturation is measured by a little sensor on Nolan’s foot and is displayed on the monitoring screen in real time. It’s important for the “usual” value to be above 90, or Nolan’s not really getting enough oxygen distributed through his body.
Nolan has been having a fairly steady saturation in the low 90’s (percent — 100% would be the best), and when he’s disturbed, it might drop into the high 80’s or even high 70’s for a minute or so before climbing back up. On Sunday, he was apparently overstimulated by the oscillating ventilator and became much more sensitive to all the stimuli. For instance, normally you can’t see much of a change in his saturation when alarms go off, but on Sunday night his saturation was dropping in response to every alarm and even loud voices (and the alarms go off all the time — for example, everytime one of the babies drops below her acceptable threshold of saturation because she got moved, so you can see how it could be a bit of a spiralling problem). It wasn’t coming back up as quickly, either. In trying to address the problem, they put little adhesive earmuffs on Nolan, stopped touching except when absolutely necessary, put blankets up around his bed to muffle noise, and put up a sign asking people to enter the pod from the other side. He was still very overstimulated.
When oxygen saturation drops for an extended period of time, you have to increase the incoming oxygen from the ventilator to compensate. Pretty quickly, you get up to 100% oxygen (which is not the direction you want to be going), and then there’s nothing more you can do to address the situation by adjusting the ventilator. In Nolan’s case, they had to give him sedatives to reduce his response to stimulus and eventually paralytics in order to keep him from stimulating himself with movement.
It was extremely frustrating for Kara and Ronan to watch because some of the stimuli feel controllable (like alarms and loud voices), so of course they wanted to control them. You can imagine the feeling of watching the monitor for hours, hearing alarms go off and knowing that a few seconds later Nolan would respond negatively. It was also very scary because it wasn’t clear if he would just continue to be overloaded and they would run out of options. There is an isolation room which would be much quieter, but it’s primarily intended for isolation of infectious patients, so if a sick baby came in, Nolan would have to get moved again in short order. And it wasn’t clear that the larger ventilator would fit in the room easily.
Nolan made it through the night and the next afternoon without completely overloading on stimulation, and on Monday afternoon they took him off the oscillating ventilator and put him back on the regular ventilator. They stressed that this was normal, and they might have to move him back and forth between ventilators several times to keep getting the benefits of each. Though he didn’t stay on the oscillating ventilator very long, they did feel it was good that they had been able to bring his carbon dioxide levels down for a while. At this point, they are simply trying to buy time to allow his lungs to grow.
Steroids remain an option down the road, but the doctors want to avoid using them if possible. Yesterday, Nolan was doing okay on the conventional ventilator, and I’m pretty sure they had the incoming oxygen down to 60% or so when I left. He was much less responsive to stimuli, so hopefully Kara and Ronan will be able to touch him again now.
The good news for yesterday was that the second head ultrasound showed no change from the first, which showed a Grade IV bleed on the right side only. The ultrasound was done on Monday afternoon, after Nolan had been on the oscillating ventilator for over 24 hours, so I take that to be a good sign that the vibrations might not be harming Nolan’s brain.
That’s about all the news I can remember right now. I’ll add anything else I remember into the next post.
-Maria
Tuesday, September 26, 2006 at 12:08 pm
Maria - thank you for these updates! My heart and head are filled with Nolan, sending out big heaps of love and hope that his lungs are breathing in the air, and out the CO2, and his precious brain is strong enough for the therapies that his lungs need. Hang in there, wee Nolan, your lungs are getting stronger with each day, so you can start putting your energy to grow and grow and grow. There’s a world of love out here, waiting to meet you and celebrate your coming home to your fabulous family. Extra big love to you all - Catherine
Tuesday, September 26, 2006 at 12:24 pm
Thank you so much Maria for this detailed update. Shannon and I are singing for Nolan, and keeping everyone in our hearts and prayers. I hope that EVERYBODY has a blessed day.
Amy
Tuesday, September 26, 2006 at 2:43 pm
Hey kara and ronan
just thought that i would say hello, and that you guys are in my prayers and that i love you guys. i like the website i check it like twice a day i dont want to miss any news. Hope that you all are doing well and im praying for Nolan to have a safe and healthy journey.
Love caroline XOXOXOXOXOXO
Tuesday, September 26, 2006 at 3:12 pm
The BMC Rugy Alumnae squad has you all in our thoughts and prayers!
Love from Mollie et al
Tuesday, September 26, 2006 at 9:14 pm
Nolan, Kara and Ronan we’ll keep holding you near all through the night and into each day. Maria thank you so much for letting us all know with such care what is going on so that we can follow Nolan’s journey.
With Love - Heather
Tuesday, September 26, 2006 at 10:20 pm
Nolan dear -I am overstimulated all the goddam time. It just takes practice. We will always be here to shelter you. lv.s
Tuesday, September 26, 2006 at 10:34 pm
Dear Ones,
Just big love coming from Alabama for everyone of you.
Margaret and all the Davises
Tuesday, September 26, 2006 at 11:18 pm
Just wanted y’all to know I have been thinking of you constantly and wish there were something I could do. I check the website several times a day anxious for more news. Hang in there!
Much love from Alice