"I'm a big boy now!"

"He's so big!" has been the reaction over the past few days as the 6C nurses and staff have taken turns welcoming Ayden back to the floor. Indeed, Ayden is now 4.275kg (4.275 x 2.2 = 9.405 pounds!). The last time that we had Ayden weighed was the night before his cardiac arrest, and he weighed 3.915kg, or 8.613lbs. To be honest, the PCCU experience felt like a blur to me, and I hadn't noticed that our little one had gained some chunk. Plus, he was so bloated from extra fluids, it was difficult to observe weight gain. I have begun to realize that Ayden changes so much everyday, and I can hardly believe that our son is no longer that newborn baby! He officially can no longer wear his newborn clothing!

Since he needed some new attire, Bryan's parents went on a shopping spree. Among the outfits they purchased is the one you see on Ayden below. Fittingly, the orange & white onesie reads, "Hungry Lil' Hippo." We know our little boy is thrilled to have a full tummy again, and we are hopeful that he will enjoy bottle feeding as much as he did before. Please pray that our buddy continues to grow and gain strength!

 Thanks for my new duds, Gran & Granddad!

Swallow Study

UPDATE:  Ayden passed!  After having "frank" aspiration (not to be confused with Frank, Ayden's Wubbanub) during last Tuesday's swallow study, Ayden had zero aspiration today.  This means his feeding tube can be moved back into his stomach.  He will also get to start practicing with the bottle again.  This is a huge relief to Allison and I, as a fail today would've sent Ayden down the path towards a g-tube.  I cannot sufficiently express how much we dreaded that possibility.

Of course, things can always change, but...  What a blessing!  Thank you, God, and to all of those who prayed. 


EARLIER:

Ayden's next swallow study will be this morning.  If you get the chance, please pray that he shows improvement such that the feeding tube can be moved back into his stomach and we can start working with him again on his bottle feeding.

Reflux Sux

Allison would be one of the first people to tell you that having acid reflux is really not a fun experience.  She dealt with it for quite a while when she was pregnant.  After the last two days, if he was able, Ayden would also tell you that acid reflux sucks.

One of the very reasons why Ayden's feeding tube was moved past his stomach and into his intestines was concern over him having reflux that he would then aspirate.  If his formula isn't going into his stomach, then he can't reflux it, and he can't breathe it back into his lungs.  Murphy's Law being what it is, however, it turns out he can still reflux the acid and gastric juices accumulating in his otherwise empty stomach.  Needless to say, this is not an experience Ayden enjoys.

Ayden has not previously had reflux issues, so this is a new development not only for him, but for Allison and I, as well.  This is but one of a handful of little things we had not previously encountered with him.  While their effect on Ayden is basically only fleeting (e.g., he's cranky while the reflux builds up, but once he pukes it up, he feels much better and is ready to move on with his life until it starts building again), these little things, when combined, have taken a toll on Allison and I.  We are slowly getting our baby boy back, but it's taking time.  He isn't able to bottle feed yet.  He is more stressful to hold because he still has extra lines going in and out of him.  Some of his voice has come back, but not all of it.  He is still (understandably) somewhat jumpy due to all the things he went through in the PCCU.  He still has a tendency to hold his breath and drop his heart rate when he gets really upset.

While we want to believe these issues will eventually rectify themselves, the fear that some of these "problems" will be more long lasting is all too real for us right now.  Of course, given where Ayden was not long ago, we are very blessed to be where we are.  It's just difficult to deal with.  Again, more so for us than it is for him.

Hopefully, Ayden will do better with his follow up swallow study this week and several of this issues will get fixed.  Baby steps.

He's baaaaack!

Back "on the floor," that is.  Yes, Ayden took one more step on his (new) road to recovery today by moving out of the PCCU.  This is two weeks to the day after he went into arrest.  Said another way, that's two weeks to the day from when we could have lost him.  This is, of course, great news.  Ayden has once again shown his strength and resiliency (undoubtedly, he had some help in that department from The Man Upstairs this time around).

Still, he is not back to where he was.  As Allison has already related today, he pretty much bombed yesterday's swallow study.  Because he did not show the ability to cough when formula went down the wrong way, we can't work with him on his eating like we were able to the first time around.  We will just have to hope that everything starts to get stronger and to come back on its own between now and the next study.  In addition to the swallowing issue, Ayden has also not yet fully regained his voice.  While he is able to make some sounds like he was before, his cry is still silent.  His face turns red, his mouth opens, but nothing really comes out, other than a pitiful, wheeze-like sound.  It is almost as if the actual act of trying to cry hurts right now.

It is likely these two issues are related.  The intubation may have caused some temporary paralysis to his vocal chords.  There could also be some residual swelling or inflammation that has not yet healed.  Another possibility is the placement of one of the cannulas had some effect on the laryngeal nerve, part of which is in pretty close quarters with the aorta.  Whatever the cause, partial paralysis in these situations are relatively common (it was a pleasant surprise Ayden had none of these issues after his surgery).  Permanent paralysis is possible, but considerably more rare.  Because he is able to make various noises, I'm hopeful this is an issue which will rectify itself over time, whether it takes a week or a month.

At any rate, God has again still been very good to us.  Our baby boy is back on the floor (which means he's back with all of his girlfriends), so he's probably pretty happy right now.  It may take a few days for him to get over not having any food in his stomach, but given where he was 14 days ago, we'll gladly deal with that.

Although I'm sure it didn't always seem like we felt this way, we are so thankful for all of the care he received from the PCCU team over the last two weeks.  As a group, they worked very hard to get us our son back.  They did an amazing job.  If not for them, I wouldn't be able to post pictures like these (that's Frank, Ayden's new Wubbanub, resting on his chest):

Just Kidding

I have discovered that all the big things and all the small things add up.

And I usually don't cry until something small tilts the already heavy laden scale.

Such was my hospital day yesterday.

Ayden did not do well on his swallow study yesterday. Ayden has a fantastic suck, and he loves eating, but right now, he is not swallowing correctly. Part of the food goes down his throat, and part of it goes down his windpipe. The worst part is that Ayden doesn't even recognize that food is going into his airways. He doesn't even cough. He just continues to enjoy his eating.

The speech pathologist believes that his inability to properly swallow is vocally-related. While Ayden can coo and grunt, he has yet to regain his vocals. One can look at him and see that he is crying, but one cannot hear him cry. (I understand the necessity of a ventilator, but being intubated causes a whole mess of problems, such as this one... especially when you have a kid that fought the ventilator like he did!)

Since Ayden did not pass his swallow study, they took away his PO feeds, so there will be no more bottle feeding. In addition, they have moved Ayden's feeding tube to NJ, which means that it is no longer placed in his stomach; instead it is in his jejunum. Since the tube is NJ, he also must be on continuous feeds, rather than bolus feeds. The argument for moving the tube to NJ is that he MIGHT reflux, which would be bad since Ayden has shown in the swallow study that he would just inhale the food.

So, Ayden went back to square one, and we shall see how he does at the next swallow study next week.

Now, while none of that information is the end of the world, I still feel disappointed. I'm not disappointed in Ayden, of course. On the contrary, I am not sure that I could be more proud of our little man. (He was on ECMO two weeks ago, and look at him now!) My hope has just been that Ayden will be able to do all the things that he could do before we ended up back in the PCCU. While failing this first swallow study does not mean that he won't be able to eventually go back to bottle feeding, the event nonetheless felt rather crappy. And, unfortunately, since Ayden has been NG (feeding tube in his stomach) for the past few days, he will be able to feel emptiness in his tummy as a result of the feed now bypassing his stomach and emptying into his intestines. That sensation of emptiness will make for an upset baby, and it's hard to watch Ayden experience that feeling.

On another (much more encouraging) topic, they hope to move Ayden "to the floor" today. Our family will be glad to be back on the 6th floor. I miss the atmosphere and the staff. I know Ayden misses his girlfriends, though they have all been more than faithful in visiting him over the past two weeks. Hopefully, our next posts will be with Ayden more comfortably on the floor.

Ode to PO Eating

Ayden's speech pathologist, Denise, whom I adore, gave the green light for Ayden to begin eating a portion of his bolus feeds by mouth. He is allowed to have 10ml with every three hour feed. Denise came by twice today to see if I was following the rules, though she claims that she was coming to check on Ayden. She jokes that she is afraid that I will have him full bottle feeding by the time she comes by tomorrow. I told her not to worry about that because Ayden was still on too many sedatives for me to be that sneaky. That is, he would fall asleep during too many of the feeds, and he wouldn't get enough food for the day. I'm certainly not willing to sacrifice his Cheez-its just so that I can try him on full bottle feeds. (I'm sure that Ayden would agree with me; he likes his food too much!)

Happy First Father's Day, Bryan!

Two Months Old

More pictures and a video are after the break.

Ayden turned two months old yesterday. What did he get for this new milestone? He got rid of the CPAP mask, which made him very happy.

Now, as you can see, he just has a nasal cannula. He is getting just a whiff of oxygen through it (the next lowest setting is "off").

Ayden still has some fluid build up in a portion of one of his lungs. His throat just hasn't regained enough strength yet for him to really cough on his own to get rid of that, so he is getting some regular treatments to help him get the fluid out. Unfortunately, these treatments include a tube up the nose so the respiratory therapist can suction out the fluid. Not surprisingly, Ayden doesn't enjoy this process very much. Who would? (Granted, most people probably wouldn't hold their breath, drop their heart rate, and turn themselves purple. To each his own, I suppose.)

We continue to get rid of other things (oddly, it feels like we've gone through this process before...). The IV line in his right arm is gone (it stopped working). The ART line in his left groin (ouch) is out. We're back to getting blood pressures with the cuff.

So, he continues to make progress. At this morning's rounds, he was once again called a "superstar."

Medical Term of the Day: "Extubate"

This lesson's a short one.

Today, Ayden was extubated.  This is a fancy term for "having a breathing tube taken out."  We like extubation.  Extubation is our friend.

The opposite of extubate is intubate.  As you might guess, this is a fancy term for "having a breathing tube put in."  We don't like intubation and, as I have mentioned, neither does Ayden.  Hopefully, Ayden will do well with his CPAP and we won't have to go back to intubation.

Breathing Apparatuses

Ayden had his ventilator removed late morning. He threw a tantrum (vagal response), and they attached him to a new breathing apparatus called a nasal CPAP. Nasal CPAP delivers continuous pressurized air (CPAP stands for "continuous positive airway pressure"), but it does not create a breathing rate for Ayden; he does that on his own. This apparatus is actually better than being on the ventilator because there is less fear of infection, pneumonia, etc. All of that having been explained, Ayden initially had some difficulty breathing on the CPAP, and the current theory is that his airways are swollen. They have given him two breathing treatments and an IV steroid. Already his breathing has started to look better.

 I think he looks kind of like he has flight gear. Maybe he is going into space.
(Apparently, he and G-Daddy can be Darth Vader together
since his G-Daddy has the same machine for sleeping at night!)

Baby Steps

After what we have gone through recently with Ayden, we are more than happy to just be heading in the right direction, even if we do so at a turtle's pace.  For the most part, since he came off ECMO Saturday morning, that's what we've been getting.  Paced by the pacemaker.  Then the pacemaker as backup only.  Then off the pacemaker.  Then a heart rate in the 110s.  Then 120s.  Then 130s and 140s.  Today?  150s.  (Ayden's been pretty mad a couple of times today.)  Baby steps.

Of late, though, things have picked up a bit.  Tuesday, his chest was closed.  Today, his chest drainage tubes came out.  Currently, the plan for tomorrow morning is take out the breathing tube.  Then, hopefully the ART line will soon come out, too (this is the line that constantly measures his blood pressure).  All of these things will hopefully make Ayden more comfortable, less grumpy (no more vagal responses, hopefully), and that much closer to getting off the sedatives.

All of this is very encouraging, given that Ayden was rushed down to the PCCU only eight days ago.  Unfortunately, that episode has made Allison and I much more skittish around Ayden than we were.  I'm sure, in time, we will get past that, but right now it's hard not to worry that something random might set him off on a downward spiral again.  What makes it worse is not knowing (and probably never knowing) what caused his breakdown.  My heart tells me it was simply God's way of guiding the doctors to ablating away the SVT problem, and nothing more.  My head tells me that's a delusional, self-serving rationalization of an event I don't truly want to understand, because of the possibility of a much less desirable explanation.

I suppose only time will tell whether my head or my heart is right.  I'm rooting for my heart (and for Ayden's).

Medical Term of the Day: "Vagal Response"

When you've spent 8+ weeks in the hospital, I guess you start to pick up and use a lot of terms you'd never even heard of before.  I hadn't really given much thought to this, until I started having conversations with people outside the hospital and getting a lot of confused looks in response.  With that in mind, every now and again I'll pick a random medical term (that has relevance to Ayden) and explain it, to the best of my ability.  This is the first such post.

As I'm sure you know, Ayden has a history of really high heart rates (the SVTs).  There are several ways to deal with these episodes, including medication or cardiac ablation.  Those are preventative measures.  When preventative measures fail and an episode occurs, there is a third option: inducing a vagal response (or vagal reflex).  Basically, it is doing something specific to engage the vagus nerve, which then acts to lower the heart rate.

There are several different such responses.  One that has worked in stopping an Ayden SVT is the diving reflex.  Imagine jumping into a pool full of freezing water.  It would be a shock to your system, right?  Everything would kind of freeze for a moment or two and your heart rate would slow.  That's the vagal response.  Obviously, we couldn't dump Ayden in a bucket of cold water, but an ice bag to the face does the same thing (an adult with this problem could simply put his face in a sink full of cold water).  The doctors have used this particular vagal response on two occasions to stop an SVT.  It does the trick rather quickly.

A vagal response can also be caused by holding your breath and "bearing down" like you are trying to go #2.  Ayden has shown us his ability to do this over the last few days when he gets mad about having a breathing tube.  He bears down, holds his breath, and down goes his heart rate.  A little bit of bagging by his nurse brings him out of it and his heart rate comes right back up.  These little tantrums of his aren't really a big deal, but Allison and I will be glad when the breathing tube is gone so we don't have to deal with this anymore (we hope).

And this concludes our first lesson.

Class dismissed.

A Visit From Uncle James

Ayden's Uncle James came to visit yesterday, and he took pictures of Ayden with his souped up camera (while simultaneously hitting on the nurses). James also prayed over his nephew.

Ayden was fairly awake last night... perhaps a little more than they would have wanted for a hypoplast that just had his chest closed. (Ayden has a way of powering through sedation. He's a stubborn little dude, which is something that we love about him and an aspect of his personality that is helping to save his life.) One of the good things about Ayden waking up is that we could see that his heart was capable of a heartrate in the 130's and 140's, so his heart appears to be recovering from last Wednesday's events.

Buddies: Ayden & Jude

Over the past eight weeks, we have gotten to meet many amazing families and children. Each carry tremendous strength and a wealth of experience, knowledge, and encouragement. In particular, God blessed us with the Dowdle family. Matt and Diana are the proud parents of Jude, a fellow hypoplast approximately one month older than Ayden. We have enjoyed getting to know the Dowdle family and being able to share in the joy and difficulty of having children with congenital heart defects. Please include Jude in your prayers, as he has decided to join Ayden in PCCU life. They are both indeed being a bit naughty! They are also both being very strong. Jude's story can be followed at www.caringbridge.org/visit/gabrieljude.

I believe that our boys have been hanging out the in the hospital a bit too much. See their similar expressions!

 

Thank you, Julie, for introducing our families!

Memories

ECMO was tested on lambs, so every ECMO patient is given a lamb. Apparently, if the hospital has run out of lambs, they will go buy them immediately as needed. Since Ayden has been on ECMO, he too has a lamb.

I couldn't resist taking the above pictures last night because he looked so sweet holding his lamb. (Actually, the lamb is holding him... perhaps some irony there.)

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Dr. Bichell closed Ayden's chest today. I am convinced that Ayden wanted it closed yesterday, but the OR team was unable to make it happen with their already weary schedule. Now that his chest is closed, they will work toward weaning him from the ventilator. Ayden hates being intubated, so I know he won't miss that. 

Katrina, one of Dr. Bichell's two nurses, came to also remove Ayden's PD drain (which was originally located right above his diaper). Since fluid was no longer draining from the tube after ECMO, they were able to remove it. As you can see, Ayden is looking much skinnier from all of the much-needed fluid drainage over the past few days.

BEFORE CHEST CLOSURE

AFTER CHEST CLOSURE & PD DRAIN REMOVAL

(Obviously, he is still a bit schnockered from the medication for the chest closure.
You can see Champ, the Vanderbilt Children's mascot, helping to prop up his legs.)

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These were pictures taken the evening before Ayden's frantic return to the PCCU. We are all eager to see that little boy again. Though we have no way of knowing what Ayden's baseline will be after all of this, we are hopeful that the point of the chaos was to remove the scary hovering of an SVT. What's an SVT? As Bryan's dad says, hopefully, "it's a memory."

Pace This!

There's not a whole lot to report for today, which is really a good thing, when you think about.  The main new development is that he is no longer on the pacemaker.  His heart rate still has a ways to go to get back to where it was before, but we're slowly getting there.  They are also slowing weaning him off the breathing tube.  It can't come out until after his chest is closed (this might happen tomorrow), but he has started initiating his own breaths, which is good.  All of these signs are encouraging and we continue to be very blessed, but as, before, he continues to essentially live in the danger zone.

I can't say it enough, though:  he's a tough little guy.

Just say no......to ECMO

On Wednesday afternoon, after Ayden had been stabilized and connected to the ECMO machine, we were told to expect him to be on it for at least 72 hours.  When he was taken off ECMO this morning, he had been on it for about 70 hours.  The kid continues to show all of us what he can do.

As always, Ayden still has a long way to go, despite today's developments.  His heart rate isn't yet what it needs to be, so he is being paced by an external pacemaker.  Due to all of the tubes that are still in him (chest tubes, breathing tube, etc.), he is still sedated.  Hopefully this is the main explanation for his lower heart rate and, once he has a little longer to recover and strengthen and comes off the sedation, his rate will be within range and the pacemaker will be unnecessary.  He also still needs a little help in keeping his blood pressure up.

He is peeing "like a rockstar" according to his nurse for today, Rebekah.  Yesterday's head ultrasound came back normal (still waiting on the the results of today's).  The ECHOs over the last three days have showed progression as to his heart squeezing and as to a valve that has been leaking (this leaking valve currently looks like it may be the main long term concern, if there is to be one).

Should Ayden continue to power through this episode without any major setbacks, something Allison and I discussed this morning (even before Ayden came off ECMO) would seriously gather merit, in my mind.  We talked about how maybe Wednesday was actually an intervention from God.  Maybe we were going down a very wrong path in trying to treat the SVTs with medication.  Maybe this episode was necessary to get us on the right path with the ablation.  Maybe Ayden will now start working his way back to where he was before and it'll be like this never happened.

Or maybe not.  I don't know.  One can hope, right?  If it turns out to be the case, I'll take it.  Gladly.

The Morning's Activities

Overnight Ayden had some increased bleeding from the cannula site in his chest.  To quote his nurse, it wasn't "enough to worry about," but it was "enough for [her] to tell the doctor."  Other things that happened overnight?  The PICC line in Ayden's leg finally stopped working after almost 5 weeks, so they had to get a new line in him, which they did.  They also tried to wean Ayden off the ECMO a little bit.  According to the doctor, he responded well to this.

Right now, Dr. Bichell is in there with him.  He is going to examine the cannula site because of the bleeding......

And now I'm not even going to bother to explain the things Dr. Bichell was thinking about doing, because we just got a call from Ayden's nurse.  He's off ECMO.  As I type this, he's been off ECMO for an hour.  And he's apparently doing great.

Thank you, God.

God is still good.

Have we said it enough? "God is good."

One can never say it enough. “GOD IS GOOD!”

Yes, Ayden's current situation is terrifying, but we have had numerous blessings over the past forty-eight hours and during our seven week stay at Vanderbilt. Had Ayden been at home two days ago, he would not have survived. That alone is a “God thing.”

Allow me to start with three nights ago. Ayden was blessed with Amber as his nurse. Amber is wonderfully meticulous. She had Ayden this past weekend and had made herself familiar with Ayden's heart rhythms and his habits and personality. She also learned a lot about us… for better or for worse.

So when I told Amber that I was concerned about Ayden, she already knew to be concerned herself. She saw that his heart rate was really low; she knew that Ayden not wanting to eat was abnormal; she could see that he had zero energy.

And she advocated for Ayden. And she was joined by other nurses that likewise knew Ayden, Nicole and Jessica. They all stood with me around Ayden’s bed trying to persuade him to eat and rubbing me on the back as I cried.

We knew something wasn’t right.

At shift change, Ayden’s nurse became Havilah. Havilah is one of the most gracious individuals I have ever known. She is also an exceptional nurse for cardiac babies and their families. She doesn’t just take care of the big things, but she pays attention to the little things as well. Havilah is the one that put vanilla in his formula to inspire Ayden to try eating from a bottle. She is the one that configured a mobile from his toys. She is the one that taught me to hold up his legs and butt to help him poop.

Havilah is also the one that never left my son’s side that scary morning. She was a flurry of activity as she rushed labs, tried to get Ayden to take his medication (even though he hardly had the energy to cry), bundled Ayden up in between taking his temperature, comforted me, etc. Havilah was there to help save my son’s life. And her job didn’t end when she passed Ayden onto the PCCU. She stayed as an extra hand in the chaos. She also came by to see us later in the day.

I had requested Havilah to be Ayden’s nurse for that day. I believe that was no accident. She was beauty and compassion in the midst of a life-threatening storm.

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The STAT call over the intercom in the hospital is sickening to hear because one knows something is badly wrong for a child. Having the STAT call be necessary for your own child…

I honestly don’t remember much about the whirlwind of doctors and nurses. I remember calling out numbers to Havilah. I remember Bryan shouting our son’s correct weight. I remember feeling an awesome peace because I knew that finally, there was an influx of people there to help a baby that had been fading since the evening before. What I remember the most, though, is watching the faces of the nurses that had loved on Ayden for weeks in 6C. The tears welled up in their eyes… I knew that we were in a place where nurses were more than nurses.

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THE DAY NURSES

You all have met Anna. Anna was Ayden’s first love. He is awestruck by her.

I’ll never forget how Teresa battled for our son’s lab results after his SVT. She wanted answers, and she wanted them immediately. The same day that she was hashing it out with lab people was also the day that Ayden and I needed some serious rest. Teresa barred any visitors from entering the room, and I believe that it was the best that both of us had slept during the day since we had been on the 6^th floor.

Tara is pregnant with a little boy named Wyatt, and we know that she will make a fabulous mother. She does a superb job with reminding us to look at Ayden for the truth of the monitors and with teaching us to take care of our baby. Tara helped Ayden realize that he could sleep on his tummy without scrunching up his legs uncomfortably under his tummy. Tara refers to Ayden as “my boyfriend” and "Mr. Ayden."

Becca had Ayden only recently, but I have always appreciated how many hours Becca puts in to her work beyond the required number.

Margaret has also been a day nurse for Ayden, but I was unable to get a picture with her. The day that she had him he was fairly well sedated from the pacing study, so she didn’t get a chance to play with him very much. When I apologized for that, she said, “At least I get to look at him.” :)

THE NIGHT SHIFT

There have been a few parties in Ayden’s room during some recent night shifts. Once we were gently reminded that there were other patients trying to get some sleep during the evening hours. (I guess we were a little too loud.) Brandi was on shift on one such night loving on my sweet baby. (One more note: We love the way Brandi says "wipes." The long "i" is extra long.)

Sarah was oriented with Ayden as her patient. She came during the time that Ayden’s poop had to be tested for blood. She always had a great humor about his smelly Elecare poop and the unfortunate task of handling it beyond the normal weigh and toss. Sarah is gentle and kind, and I was glad to have her take care of our baby during orientation and following.

Abby is usually the charge nurse for the night shift. She has actually been Ayden’s nurse only once, and I believe that it was the first night that we were on the 6^th floor. I had never spent the night “alone” with my son, and I was already exhausted from hospital life over the previous weeks. I remember how helpful Abby was in coordinating the vital sign checks, her assessments, and my own crazy pumping schedule. She helped Ayden and I get some rest and made me feel like 6C life would be doable.

Sonia is one of my absolute favorite care partners. Not only is she super sweet, but she is super careful about not waking up Ayden (or me) during the night while checking his vitals. If she does wake Ayden, she doesn’t just walk away and let him cry; she soothes and comforts him and has this amazing calming effect over Ayden that lulls him into a sweet sleep. Sonia is also very intentional about clustering her care with the nurses so that our rest in maximized in the evening hours. Sonia says that she gets her baby fix being around our little one, as she refers to him as “my baby.”

When Nicole is on duty, I always feel a sense of peace. She is often the charge nurse, though Ayden has been lucky enough to also have her as night nurse as well. She is exceptionally helpful in either role. She has the knowledge and wisdom of a charge nurse and the nurturing manner of a bedside nurse. Nicole has helped me soothe Ayden on nights that he has been NPO, doing things like bathing him at 2AM and patting his bottom, as she addresses him as “Bubba” and "Pumpkin."

One of the things that I love about Jessica is that I can often identify her voice before I ever see her. She has a recognizable Southern accent paired with a joyful spirit. Living in the hospital has the potential to bring you down, so I enjoy Jessica’s positive energy. 

Amy is an attentive nurse, and she recognizes slight changes. She is willing to ask questions of both the doctors and me when she sees things for concern. She knows that cardiac children need a responsive nurse.

THE RESIDENT

During our time at Vanderbilt Children’s, we have encountered two residents that we fully appreciate, English in the NICU and Bridget in 6C. Both women desire to be pediatric cardiologists, and it is evident in everything that they do that they are knowledgeable, passionate, and amiable.

While in 6C, Bridget made herself accessible; she listened well; she loved well. As parents of a cardiac baby, Bryan and I have numerous questions, and occasionally, we question. We felt confident in Bridget’s ability to answer our questions and our questioning. We are sad to see that Bridget will be going to Colorado to do her fellowship, but we are grateful for the care that she gave Ayden, and we wish her many blessings in her new journey! Those children have no idea how awesome they will have it with Bridget as their clinical fellow!

Update #5

The ablation is all done.  Allison and I spoke with Dr. Fish.  He seems confident that he got all of the conduction sites.  After Ayden is able to come off ECMO, Dr. Fish will do another pacing study just to make sure.  He said that Ayden performed admirably all the way through.

They are working on getting Ayden back into his Big Boy Bed and back up (along with all his extra machinery) to the PCCU.

Update #4

I spoke to Dr. Fish not long ago.  Ayden continues to splendidly but, as he is wont to do, he is providing Dr. Fish with a challenge.  Apparently, Ayden either has two extra pathways that are close together or has one pathway that splits on one or both ends.  The ablation worked on the first pathway and probably did some minor damage to the second.  The second one eventually recovered and was able to conduct again, which is why they were able to induce an SVT again.

Dr. Fish believes he has taken care of this additional conduction site, so we are in the waiting period again where they will make sure they've got everything taken care of.  As before, if one starts up, they will do some more work.  If not, they'll be done.

Update #3

They were able to induce an SVT, so they are going back in to do further ablation.

Pictured below is Ayden's G-Daddy emailing the masses. He is sporting his new clothing line, "Ayden's Army."

Update #2

Dr. Fish has done the ablation and they believe they have dealt with Ayden's electrical pathway.  Initial indications are that they cannot start up an SVT.  Standard procedure is to try over a 30 minute period to ensure they have gotten it.  If one starts up, they will do some more ablation.  If one doesn't get going, they will be done.

As before, Ayden is going through the procedure like the tough little guy he is.

Update #1

They have everything set up, have started his SVT, and are doing the electrical pathway mapping.  This is what will allow Dr. Fish to know exactly where he needs to go to burn off the extra electrical pathway that is causing all the problems.

So far, Ayden is handling the procedure just fine.

Let the Waiting Begin

Ayden is now in the able hands of Dr. Fish and his team.  We expect to get the first update within about an hour.  Dr. Fish did some more research among his counterparts around the country (the people he would go to if his child needed an ablation) and decided not to do the cryoablation.  Instead, he is going to do the standard, radio frequency ablation.

Once More Into the Breach.

After much discussion between Dr. Bichell and Dr. Fish (what two better people to have around to decide what's best?), Ayden is soon heading down for an electrophysiology (EP) study and cardiac cryoablation (using cold to remove the extra pathway).  This will hopefully permanently remove the cause of the SVTs, which would mean no more need for anti-SVT medications.

Several things have come together to produce this course of action at this time (there had been talk at rounds of waiting a couple days to do the EP study and ablation).  First, Ayden continues to maintain and (slowly) improve.  I've seen a heart rate as high as 107 today, he's peeing a little bit, he's been moving around (including getting his hand up by his head, just as he likes it - see below) and responding to our voices, and his heart is squeezing better than it was on Wednesday afternoon.  Second, the conclusion has been that fixing the SVT issue should hopefully allow Ayden to come off of ECMO sooner.  Finally, there is a very real concern that if SVTs could still happen when they wean him off ECMO, and one occurs, it could do very serious damage because his system just wouldn't be strong enough to handle it.

This process will take several hours this afternoon.  The EP study will take up most of the time, as Dr. Fish will want to map the electrical pathways in Ayden's heart so that he knows exactly where he needs to go to remove the problem.  Only then will he start the ablation procedure.  With all of the connections they will have, they will be able to fairly quickly know if the ablation is having the desired effect.  All told, this could take upwards of six hours.  We will again be riding this out in the OR waiting room.  Please keep Ayden in your prayers today.  I will try to provide updates along the way, just like with his surgery.

Go, Ayden, Go

The afternoon's procedure went smoothly.  Instead of adding a third cannula, Dr. Bichell removed the two from Ayden's neck and placed them in his chest.  He also put in two chest drainage tubes to help siphon off the accumulated fluid.  The re-placement of the cannulas appears to have done the job.  The ECMO flow is better.  Ayden's blood pressure is up.  So are his oxygen levels (including the cranial level).  And his heart rate (as high as 103!).  I believe that they are finally satisfied with the ECMO connection and the results it is producing.  This should hopefully allow Ayden's body to do less work and heal more.

Overnight, they want to see Ayden's kidneys kick back into gear.  They are currently not pulling fluid via the dialysis machine.  Instead, they want him to start peeing and getting rid of that fluid, himself.  Everything else just needs to maintain.  It's time for Ayden to start showing this new group of doctors and nurses what many already know:  he is one tough little guy.  He is a "little fire."  He has heart.

Here's what he looks like with his new cannula placement and the drainage tubes:

Third Cannula's a Charm?

Dr. Bichell is currently in the process of placing a third cannula in Ayden.  The idea is to allow for better blood flow through the ECMO machine and his body.  In turn, this will hopefully decrease the amount of fluid loss from his vessels into his body and will allow him to start on his road to recovery.  Dr. Bichell also may insert two drainage tubes into Ayden's chest to help deal with the fluid build up.  He is one puffy baby right now.

On a different note, I mentioned one area of concern is his how his brain made it through yesterday and how it is dealing with the ECMO (Ayden having some kind of developmental disability or impairment has always been my biggest fear).  Today they did the first of three head ultrasounds.  The results came back normal.  Thank you, God, for that.

The Day After

There were no major changes to Ayden's status overnight, either positive or negative.  They are having to regularly give him fluid - blood or saline - because fluid is seeping out of his vessels and into his body.  They think they may be able to rectify this problem by improving the flow of the ECMO machine.  To do that, I believe they are leaning towards putting in a third cannula in his femoral artery.  Dr. Bichell will probably be doing it this afternoon.

They cannot start to wean Ayden off the ECMO machine until they get this fluid issue fixed.  If he continues to lose fluid, they have to continue to give him fluid, and we'll be stuck in a vicious cycle.  This is all very important, since with cardiac patients, if they are not able to come off ECMO within 5-7 days, they will likely never be able to.  So, we have that looming on the horizon.

The Other Shoe

Although I have not been as diligent about this of late - both on this blog and in my own head - I have tried to make a point that, even though Ayden has exceeded expectations, even though he has been the "star" of the building, there was never a guarantee it would continue. There was never a guarantee he wouldn't regress at some point. Well, that point has come, in force.

Today, the other shoe dropped.

I will start with the end, then circle back to the beginning. To quote Kelly, the surgeon's nurse, Ayden is "very sick." He is back in the PCCU. He is currently stable, though, in some sense, it's artificial stability. He is on the ECMO machine. This apparatus circulates and oxygenates his blood for him, because he is not currently able to do so on his own. He is sedated. He has a breathing tube. He has an arterial line so his blood pressure can be constantly monitored. He is hooked up to a dialysis-like machine. The doctors are monitoring many things, including his heart rate and his kidney function. Over the next several days, they will be checking for any indication of bleeding in his brain. Very sick, indeed.

Now, to the beginning. Over the last day or so, Ayden's heart rate had been lower than usual. This is a common side effect of the anti-SVT medications he has been on, so that alone wasn't a huge cause for concern. However, yesterday he became less and less interested in eating (his favorite thing to do) and seemed unable to stay awake for very long. Overnight, he refused to eat, seemingly because just one or two sucks on the bottle was all he had energy for before he would doze back off. Obviously, something was amiss, yet the tests run this morning did not raise any major alarms. There were some indications of a possible infection, but not a lot. Around 11 this morning, when the nurses were trying to draw some blood for some more tests, Ayden's heart rate dropped precipitously, his oxygen levels bottomed out, and he went white as a ghost.

In short order, he became the subject of a stat call over the intercom, which, as a parent of a child in the hospital, is pretty much the last thing you want to happen. Within minutes, there were 20+ nurses and doctors either in his room or out in the hallway. They were able to get him stabilized fairly quickly so he could be transported to the PCCU. Once he was down there, however, things went from bad to worse.

I do not yet have all of the specifics of exactly what happened and of how dire the situation got, but I do know he crashed again after he arrived in the PCCU. His heart rate got at least as low as 20bpm (his normal awake rate is in the 130s to 140s). It's possible it even stopped at some point. When it became clear Ayden was not able to get out of this on his own, his surgeon, Dr. Bichell, came up from the OR where he had been prepping a patient for surgery in order to do the ECMO connection (this involved inserting two cannulas into his neck, one to pull blood out and one to put it back in). They performed CPR on him while the ECMO connection was being done. Dr. Fish, the electrophysiologist, was also on hand right away. (Another reason why we feel so fortunate to have this place at our disposal - two of the best doctors in their respective fields were quickly there to take care of Ayden.) A lot of doctors and nurses spent a lot of time and effort to get him stable, which they eventually did.

Back to now. The next 24-48 hours are very important. The ECMO machine is keeping him alive, but it brings it's own dangers. We will slowly get an idea of how much damage this episode has done ("if any," right E?). The three major areas of concern when there is a potential loss of oxygen to the body: kidneys, heart, brain. There have been some encouraging signs. Before we even had the chance to see him, they told us he had started to wake up, move around, and open his eyes. That's a good sign, although they are going to keep him sedated to prevent movement from jeopardizing the integrity of the cannulas in his neck. His heart rate is back up over 90 (he is squeezing his heart, the ECMO machine does not do that for him). He is peeing, which is a positive sign in the kidney function department. His color is returning.

Even more so than before, he is far from out of the woods. What brought this all on is still unknown, although there are some theories. The hope is it was caused by medication, and preferably by medication he will soon no longer need. Dr. Fish had started thinking the SVT problem was simply not going to be solved with drugs. He was at least contemplating the other treatment option - cardiac ablation. That is a surgical procedure involving the use of a catheter inserted into the heart to "burn off" the extra electrical pathway that is causing the SVTs. Given today's episode, and that Ayden currently has external support (i.e., ECMO), Dr. Fish has already cleared room in his schedule Friday afternoon to do the ablation, as long as Ayden remains stable.

Not surprisingly, the nurses and doctors have been amazing. Many of the people Ayden has come in contact with while he's been here made it a point to come and check on not only him, but also on Allison and I. Bridget, his first resident "on the floor," and Katrina, one of his NICU nurses, both heard the stat call. Neither thought it could possibly be Ayden (the call gives the patient's location, but not the patient's name). When they heard it was Ayden, they came right away. Several of his more recent nurses - i.e., his girlfriends on the 6th floor - have come down to check on the three of us, to tell us they're thinking about him and praying for him. There are some truly wonderful people here. We are grateful for all of them.

***

As for Allison and I, we are both staying at the hospital tonight in one of the PCCU family rooms (just like what we stayed in while he was in the NICU). It is comforting to be this close. It is comforting that an ECMO nurse will be in his room 24 hours a day, in addition to his PCCU nurse. We are trying to focus on the encouraging things, although it is very hard. I recently wrote about how strong he has been through all of this. That seems so distant right now. I pray this turns out to be nothing more than one more opportunity for him to show everyone here how much of a fighter he is, to show them how much heart he has.

I made a quick trip home tonight to get the laptop and some clothes. I found myself standing in the doorway of his room, which I had opened up to the rest of the house with the thought he might be occupying it soon. I walked in, fell to my knees, bowed my head to the floor, and prayed, out loud (something I just don't do), to God. Through my tears, I begged God to keep Ayden safe, to guide the doctors, to heal him, to allow him to come home and to live in his room and to sleep in his bed.

I told God I wasn't ready for Ayden to go away. I don't want to lose him. I'm too proud of him. I love being his father too much. I told Him Ayden may not be strong enough to get through this part on his own, that Ayden may need some of His strength. I prayed. I begged. I cried.

***

Allison took a picture of Ayden tonight. Here is what our little guy looks like right now.