Category Archives: Fontan

They Tried To Make Us Go To Rehab, and We Said…Whatever it Takes

So this was new territory for us…the Rehab unit.  While Nolan’s weakness was unexpected for us, we are always willing to do whatever it took to make him better.  So to the 4th floor we went.  We met with Dr. Tsai, who was over that unit and he was a very kind, compassionate guy…we really liked him.  For some weird reason we technically had to be discharged from the hospital and re-admitted to the Rehab floor, even though we never once left the hospital.  But oh well.

One thing became clear right away: we were outside the friendly confines of our usual CVICU and Progressive Care units, where caring for kids with CHDs is right in their wheelhouse.  Here?  Not so much, but that’s not a bad thing.  We just had to do a lot of explaining and re-explaining, and – of course – resetting the blasted pulse ox machine so it wasn’t beeping every 45 seconds.  A slew of therapists came through to do initial evals on Nolan and we learned that everyday except Sunday he would have up to 3 hours of therapy a day and they would come in every afternoon to post the next day’s schedule on a calendar in our room, which was pretty cool.  It would have the therapy, the therapist’s name, their picture, and length of time.  They even scheduled nap/rest times.  I actually liked knowing who was coming and when, as opposed to other floors when people just show up (you know how that is…come on, people).  Otherwise the staff worked pretty well with us as they got used to Nolan and let us kinda control how often they’d come in and bug him and even let us give most of the meds if we were able.  That really ensured a more restful night…for him, not for us: we slept on an awful, skin-eating vinyl couch, but whatever.

On Nolan’s second day they jumped right into things like helping him stand and use his arms for play:

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It was a rough go at first: he was still very weak and still on oxygen so things were slow-moving and he got tired easily.  But this is Nolan we’re talking about, so he’s a trooper!  We enjoyed walks around the hospital in his wagon and even fun time in his room…one of his favorites was playing Bingo:

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The combo of letters and numbers was right up his alley.  We’d use the TV in the room to tune into the radio station in the lobby and he would call and say “BINGO!” whenever he’d make a line.  Then two of the interns would come up dressed like Disney characters and bring him a prize.  He LOVED it.

So on and on it went: Nolan continued to work really hard and began making some good progress.  He even got some visits from the therapy dogs:

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We got to meet some families there in that unit who had been there for some time and would be there for some time.  Their kids were going through some real difficulties and my heart went out to them.  We knew Nolan would regain his strength and for that I’m thankful.  Nolan started getting more energy (and got pushier and bossier, as is his custom) and eventually we got to this point:

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That is a post-Fontan, little beast, completely walking on his own with NO oxygen! YEAAAAAAAAAH BOY!

So the next step, then, was to get the heck outta this place and get back home!  WOOHOO!  And then finally…33 days after we went in for the Fontan…Super Nolan walked back through those hospital doors and we made our way back home, where we can focus on an amazing future for this little nugget:

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The Long Wait (the recovery process)

After a long, exhausting day of waiting for Nolan’s surgery to be done, we were ready to begin to road to recovery.  As I’m sure you know, all heart kids are different, so recovery times can vary…but we were hoping for something like 2 weeks, 3 tops.  They managed to extubate Nolan late that same night and then they continued to work on stabilizing his blood pressure and managing his pain.  You could tell he was in some discomfort because his brow would furrow from time to time.

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Eventually he settled down a little and even asked for some water and agreed to watch an ABC video (he is obsessed with he alphabet).  It seemed like he was showing some definite signs of himself.

Still, he did just go through a major surgery, so he was pretty agitated and restless.  He would try to toss and turn, I’m sure it was an effort to be more comfortable since he likes to sleep on his side.  He even almost rolled completely over at one point, it was like trying to hold down an angry eel.  But we settled him down.  His belly was distended so we held off on feeds for the time being and we just let his awesome medical team work their magic.  According to the physicians over the next several days, the Fontan looked like it was working properly and the fenestration was doing what it should.  If anything they wanted to keep an eye on some narrowing in his pulmonary artery, which they already ballooned once during his cath earlier this year.

Nolan continued to be restless and fussy and it was really difficult to keep him calm.  He was draining quite a bit from his chest tubes, which is good, and the plan was to get his belly to calm down and to get him up and moving to help with the drainage.  Eventually we got one chest tube out while the other continued to drain.  Every day they came to do an x-ray to see how his chest was doing and eventually they had to put in another chest tube.  I wasn’t thrilled about that, since those are obviously uncomfortable for him, but if it’s one step closer to home it needed to be done.

The biggest concern was around Father’s Day, where I noticed considerable weakness in Nolan’s arms.  In fact, he didn’t really move them.  I brought this up to his medical team, and the next day, and the next day, before someone finally looked into it.  That was extremely frustrating because, you know, you want to be heard as a parent.  But with his nurse’s help, we were able to advocate for a closer look.  They some neuro checkups and a couple EEGs to rule out any neurological problems, and determined that some big-time therapy would get that function back.

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Eventually we got Nolan’s agitation under control and got him moved from the CVICU to the Progressive Unit.  While up there he was able to get out of the bed and ride around in the wagon and even got some visits from the therapy dogs.  We began some in-room therapy with him and he was happy to realize that those two little legs still worked great and were getting stronger.  We got feeds re-started on him and eventually both chest tubes came out and those daily x-rays looked clearer and clearer.

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Now normally we would be discharged from the Progressive Unit and head home, but since Nolan was still very weak, we had to be transferred to the Rehab Unit.  This would be a whole new experience for us…

Super Nolan Touches Down at LCH (surgery day)

Early in the morning of June 16th, we woke up Nolan to make the 35-minute drive to Levine Children’s Hospital for his third open-heart surgery, the Fontan Procedure.  I think it took everything within me to get out of bed and just get through the process of loading into the van.  We dressed Nolan in his Super Nolan cape (courtesy of Heart Heroes – THANK YOU!) and mask and he felt super special.  Because, well, he is!

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As you can imagine I was a rollercoaster of emotion: basically I kept going back and forth between scared to death and completely confident and calm.  I wasn’t as terrified as I was before his Norwood, and I wasn’t as calm as I was before his Glenn.  It was somewhere in the middle.  I’m sure it had something to do with the length of time between surgeries.  Anyways, we made it to the hospital just fine: we parked and took Super Nolan inside and he walked around like he owned the joint.  He definitely loves some attention.

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The team checked us in, validated our parking, and escorted us to the pre-op area, where we would go through the familiar – but not comfortable – process of speaking with the surgical team, the anesthesia team, and nursing team.  We watched TV with Nolan, gave him lots of hugs, and walked around with him looking at all the room numbers.  I really, really didn’t want to let him go…and that became stronger as each second ticked by on the clock.  Finally, Nolan got his loopy meds and the team came to take him back.  They went one way and we went the other way, and I felt a total wreck…probably the biggest mess I’ve been in a long, long time.  Now it was just time to wait in the waiting room…and wait, and wait, and wait.  We knew that a long wait didn’t necessarily mean the surgery was going poorly, but mostly likely meant he had a lot of scar tissue to work through.  Regardless, we received regular updates and I just did my best to occupy the time.

Finally we got the call we had been waiting for: Nolan’s surgery was done and successful.  After a lengthy wait, we got up to see him – it’s hard to see him intubated and on all those med pumps again:

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But I was so happy to see some good sat numbers and just to hold his little hand and tell him we were there for him.  Next step?  Get outta here.