Updates on Nolan

There is not a whole lot to report. Nolan continues to be stable and is sticking with his trooper routine. He has continued to gain weight (fluid), so he’s still quite the ripe bean. Actually, I think he kind of looks like a linebacker now — the fluid is making him more wide and less round, it seems. They are trying to figure out why the fluid isn’t draining by now. They’ll have a look at his heart (echocardiogram?) tomorrow to see if anything there is contributing to the problem; if so, he would probably have surgery on Friday.

He’s also still losing platelets, but at a slower rate than before, so we hope that is on the way to resolving itself. Another piece of the puzzle…

-Maria

So, Nolan got a new ET tube put in today, apparently the old tube was blocked by a pretty big goober (NP’s words) which was causing little bean to desat on his oxygen which caused pretty big drops in his heart rate.  Before the new tube an x-ray was done, which showed that Nolan’s right lung has pretty much fully collapsed so he’s back on high pressure to try and reinflate his lung and on high added oxygen to keep his o2 saturation up.  The np thinks it will take some hours to get the lung reinflated which is more reassuring than some days.  one added concern is that Nolan’s body seems to be eating up platelets at a high rate.  He’s received quite a few platelet transfusions over the past 24 hours which could mean a few different things:  persistent infection somewhere or a continuing necrotizing of his intestines.  at this point its a wait and see strategy from the docs, surgeons, and nps.  some positive info, his blood pressure has remained good, he has opened his eyes wide and long to look into karas waiting gaze and he seems to respond to a singsong from his parents that goes a little something like this:

“No-lan La-Rue,

Heal-thy cells through-out your body,

No-lan La-Rue,

Healing lungs for you,

and Good Growth too.

(alternate with)

and a healthy gut too.

      or

We love you.”

Feel free to hum it all day long.  Kara and I wake up singing it.  Peace and light.

It sounds to me like Nolan has had an entire 24 hours of smooth stability since his surgery. At any rate, the phone update I got a couple of hours ago was that he was about the same. I’m just inferring about the time in between updates being smooth. Today, no news is good news.

Nolan is feeling contrary today and decided that he wasn’t ready to do as the doctor said. He’s continuing to do very well despite the expectation that he would be struggling now. He stayed about the same all through the night and has been stable today, so we are counting our blessings and hoping that this trend continues. I know we have all learned that good times are always followed by down times, in that “three steps forward, two steps back” manner (though sometimes it feels like we’re walking in circles even with the forward movement), so we are trying not to lose sight of that inevitability… but WOW, our spirits are sure lifted for the moment. We’ve been in the low point for so long that it just feels great to get some good news and to know that Nolan is getting a break from the hard hard struggles of the last week.

Kara and Ronan are a bit better than the rest of us at keeping it all in perspective, but still I know that they are happy to have this time right now. One of Nolan’s nurses who is very careful not to raise hopes too high (her own or ours, so as not to make the inevitable fall so hard) said she was surprised and very pleased with Nolan’s condition. Hooray!

I’m slowly getting some older pictures uploaded into the photo album. This is a picture from Ronan’s first kangaroo with Nolan last week.

Oh, and I wanted to correct my earlier statement about the bruise and the ultrasound. Turns out the bruise was on his skin and he had external swelling there, which is not a usual presentation of anything (one veteran nurse said she had never seen that in 20 years), and that is why they decided to do the ultrasound. The ultrasound showed an area of concern, but they weren’t sure whether it was necrotic tissue or not, leading to the question of whether to put him through surgery or not. Or course, Kara and Ronan and the doctors made an excellent decision there.

Thanks for all the love and support and shared joy!

Before the chatty stuff, the quick news is that the surgery was successful and Nolan came through it great. Hooray!

Today was Nolan’s four week birthday — happy birthday, Nolan! One of his main squeeze nurses, Trish, brought in birthday cupcakes for the trooper. Okay, not actually for him to have — I think it’s against NICU policy to blend up cupcakes and mix them with the breast milk at feeding time. Something about too much sugar?… The cupcakes were superman cupcakes, because Nolan is such a tough little superhero in battling all these problems. How sweet is that?

The superman emblem is actually a ring on top of the cupcake. While we were waiting for news from the surgery, we had pizza and cupcakes in the NICU waiting room and thought superpower birthday thoughts for Nolan. We put on the superman rings and actually laughed a bit and had some fun mixed in with the anxiety of waiting. Apparently it worked, because soon after, Nolan’s surgeon appeared with good news. Nolan was out of surgery already, and they had indeed found a necrotic area in his intestines.Now, we’d rather he didn’t have a necrotic area at all, but given that he had an infection, it was good that they were able to find a clear problem and deal with it. They don’t know if the necrotic tissue is the chicken or the egg with the infection, but removing it should help him get over the infection at this point. If it had not been removed, he would have died, so I guess it’s an understatement to say it will help him. The surgeon removed about 8cm of small intestine and 2cm of large intestine, which Dad pointed out means Nolan will never get appendicitis. So, hey, he’s ahead of the other kids in that department… The surgeon also said that the other parts of his gastrointestinal system that he saw looked great, and that there was very healthy intestine on either side of the clearly dead intestine, which is not always the case. It means it’s quite likely that they got everything they needed to get and no more, and they shouldn’t have to repeat surgery as they might if it was less clear which tissue needed to go and which didn’t.

We were warned that the next three days or so will be very rough on Nolan. He will take on a lot of fluid (he already had, but it won’t get better right away) and that will impact his lung function. So, though he’s out of surgery with no immediate complications, we expect a fair amount of nail biting over the weekend, and there’s the possibility that it will just be too much for his lungs. They hope that Nolan will begin improving lung function on Sunday (back towards the pre-infection baseline, which wasn’t great but was a lot better than the recent crises).

With all that dire stuff said, I’m pleased to report that his stats when we saw him just after surgery were great. He was saturating at 97% on just 40% oxygen, and he was steady as could be in all the things they monitor on those screens. On the monitor, he looked like a different baby to me. I’m glad to be forewarned that things will likely go downhill for a few days, because it would be easy to think he was out of the woods with this one. Of course, it is wonderful to see him so stable, even if it is short-lived.

Kara and Ronan are spending the night at the hospital in a “parent sleep room” that the NICU has for this sort of time, when parents want to stay close to their baby but also need to sleep. Imagine that.

I’m including a picture of Nolan from tonight. As you can see, he’s very swollen with fluid, but that’s just his four-week-old phase and with luck, he’ll be out of that phase soon.

Sweet dreams to all.

Love,

Maria

I just got word that Nolan is going into surgery.  They are concerned that he may have a necrotic area in his gut, as an ultrasound today showed a large bruised area.  If there is a necrotic area, they may be able to remove it now but if they waited, they would not be able to.  Or at least that’s what I understand.

I gather that Nolan is more stable today, despite this news.  They think he is stable enough to undergo surgery, which seems like a good thing to me.

-Maria

Just wanted to give you all a very quick update.  We heard some better news this morning.  I got a phone update from the hospital and Nolan appears to be responding to the antiboitics. He’s still in a very fragile, precarious place, but the course of care the doctors and nurses put together are helping him through this valley.  He is by no means out of danger in this particular crisis, but we are always pleased when things look a little brighter, and I wanted to share that bit of joy with all of you.

Nolan is in the midst of a crisis at the moment.  They believe he has a systemic infection, which is impacting him in a number of ways.  They have started him on “big gun” antibiotics (vancomycin) and we hope he will begin to respond by Wednesday morning, though that’s a vague guideline.

He has been having trouble with oxygenation and ventilation all day.  They have had to increase the pressure on the ventilator to a very high level, and there is some danger that it will burst a hole in his lungs, so we hope they will be able to turn that down soon.  His oxygen level is up to about 80% right now, and he’s saturating well at that level.

He is also having gastrointestinal problems.  He is not “processing” the milk they are giving him — it just stays in his stomach.  They did an x-ray and were able to determine that it isn’t caused by a worst case problem (sorry, I don’t know what that is), so is probably another symptom of the systemic infection.  That’s good, because at least we’re dealing with one source problem.

Blood pressure and heart rate have also been problems today.  His blood pressure was extremely low for a while, though they have gotten that back to a level they’re more comfortable with.  His heart rate is high now.  Again, these problems are due to the infection.

Kara is still in the hospital tonight but she has been up and around and spent most of the day with Nolan in the NICU.  As far as we know, she will be discharged on Wednesday.

Hold tight to the good news and lift Nolan up with your love to help him get past the bad news.  Visualize antibiotics circling the wagons to defend Nolan and quickly vanquish non-resistant bad bacteria.  Sweet dreams to Nolan on his many undoubtedly loopy medications, and sweet dreams to all of you out there who are loving Nolan.

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.

i did indeed get to hold my little baby boy a couple of late nights ago and just finished another session of father/son snuggling a few minutes ago.  Nolan has been stable, still, and sedated these past few days, with increased feeds fortified with extra calories in hopes of increased girth and growth this weekend.  we had a family meeting with the doctors and nurses yesterday, and the word right now is growth.  Growth in length, growth in weight, and hopefully eventually outgrowing whatever plagues his little lungs.  There are still woods to get out of, put more straightforwardly, survival and health are still not guaranteed options for our little butterbean.  But the last few days continue to feed our hope and really how many days of survival and health are any of us promised?  While holding him the past few times, Kara and I have noticed a little wheezing chirping noise which the nurse assured us is a good sign that air can get around the tubing in Nolan’s throat which means his trachea is not swollen.  Little nuggets to hold onto.