Category Archives: Care at Home

Weaning off Meds: the Horrors


Nolan was sent home from the hospital with quite a bit of meds including aspirin, lasix, reflux meds, something for his tummy, and two pain meds: Ativan and Methodone.  We were only instructed to give those meds for a day or two before ceasing them entirely.  And that’s where the ab-so-lute madness began.  What I didn’t know was that apparently weaning off those meds is like putting your whole body through pain.  And boy did Nolan show it.  For like 2 days Nolan did nothing but writhe and scream.  Picking him up didn’t help…putting him down didn’t help…rocking him didn’t help…putting him in his swing didn’t help.  He would cry and cry and cry, and wouldn’t sleep…and neither did we. 

I honestly thought I would lose it…I mean we were getting no sleep, all while trying to learn to incorporate Nolan’s routine into our already crazy routine so we can come up with a brand new routine.  It was exhausting and we both felt like we were at our wit’s end.  But just as quickly as the screaming came on, it went away, just like that.  But dude I gotta tell you, that was the WORST couple days.  I look back on it and just shake my head, I was so scared that everyday would be like that (hint, it wasn’t).  Being a heart parent is definitely hard work: you don’t know what curveballs come your way, and you have to learn to handle them often with a severe lack of sleep. 

So let’s hear from the other heart parents out there: how did you adjust to your baby being home after discharge?


Coming Home!

February 2013 brought us great news: after 2 months in the hospital, Nolan would finally be coming home!  I believe I was at work that day, so I quickly told my boss then headed down to the hospital with Bekah.  There was still a lot to do: Nolan would need a final clearance from all the doctors, we’d have to pack up all his gifts and his scale and his feed pump and IV pole, etc.  Someone from the hospital’s pharmacy came up and brought us all the medications they filled for Nolan.  It was very busy and very exciting.  Those of you who have gone through this know, however, that it’s never ever quick.  There’s a lot of waiting…and waiting…and waiting. 

Finally it was time: I went to get the van and the whole time I had a spring in my step and I couldn’t stop thanking God that Nolan would finally be coming home.  Even though Nolan was small and not completely strong, I was far less nervous bringing him home, I was just so happy. 

It wasn’t til I got home, though, that reality sank in: this is all up to us now…there’s no more nurses around, no doctors, none of that…just us, a scale, and a sat reader.  Oh boy.  We wanted to be sure we did everything right so that Nolan had the best chance of getting to his next surgery.  And every day without problems is a step in the right direction. 

It was the first time we had all three of our boys together…it took 2 long months, and we had been through so much.  But the journey was just getting started.  In the meantime, though, it was nice to have our twins together once again…that’s Grant on the left and Nolan on the right:


The Checklist

It was starting to look more and more like Nolan was getting ready to be sent home.  This long portion of our journey would soon be over!  But hold up, not yet.  We had to complete…THE CHECKLIST.  We were presented with a discharge checklist of things that we needed to learn, perform, and complete prior to Nolan being allowed to go home.  This included things like learning how to draw and administer his meds via the G-Tube, sitting him in his car seat attached to a sat reader for 30-45 minutes (the equivalent of a drive home), learning the CHAMP program, setting up his feeds via G-Tube, learning infant CPR, and spending one night at the hospital completing all his care.  Some of the tasks were pretty easy: the CPR lesson came in a packet from the American Heart Association that had a little practice dummy and a DVD to watch, then a nurse reviewed it with us (the good thing is we got to keep this kit so we can share it with people who would dare to watch Nolan). 

Some of it we completed separately due to our schedules.  The one thing that got me nervous a little was drawing meds.  I was really wanting to pay good attention so I didn’t mess things up.  I checked, re-checked, and checked again before administering the meds.  Nowadays I’m a beast at drawing meds.  Once we got comfortable doing everything else, including feeds, it was time to schedule a day to stay over at the hospital.  I arranged everything with work, but honestly we weren’t looking forward to it as much.  Not because Nolan was on continuous feeds and we’d need to prep his formula, or that we’d have to remember when to give his meds.  It’s because his room at Progressive Care was TINY.  It had one little couch along the wall that was no more than about 6 feet long.  There were 2 of us.  I’m over 6 feet tall by myself.  So I let my wife sleep on the couch and I had the pleasure of sleeping in a rocking chair…yeah, that sucked.  Big time.  But aside from some chiropractic issues, the night went well and it was good to see everything on THE CHECKLIST signed off.  The next step was to wait for doctors’ approval to send Nolan home…oh the suspense.

The CHAMP Program


I hope everyone had a great Christmas and New Year!  Thanks for your patience while I took some time to spend with my fam.  Now back to it:

While in Progressive Care with Nolan, we were introduced to one of the cardiology Nurse Practitioners, who told us about a program called CHAMP.  This stands for Complex Congenital Heart At Home Monitoring Program, and she told us that this was a program we would use to “ensure he lives until his next surgery.”  WHOA.  That scared me because I really didn’t want to think about the possibility of something happening to my boy at home, but I knew it was something we had to do for him.  What I eventually learned in the long run is that there is a percentage of kids who will survive the Norwood Procedure, but will not make it to the 2nd procedure (the Glenn).  The CHAMP program is an effort to lower that number and get HLHS kids to that 2nd surgery.  I’m all for it!

The gist of the program is that eventually you will go home from the hospital with your child…there will be no doctors or nurses around…there will be no one checking his vitals…there’s just you, the parents.  So the program sends you home with an oxygen saturation reader and a scale.  Everyday you are to take the baby’s sats and weigh him and log both numbers in a binder they give you.  Not only will that allow you to track and show weight gain, it allows you to see any trends that are happening, whether positive or negative.  For example, you will be able to see – over the course of several days – whether oxygen saturation has been trending downward and/or weight gain has been stagnant.  You can then call the cardiologist and say, “I’ve noticed that on this day he was at this and today he’s at this.”  It gives a much better picture to your medical team as opposed to you calling out of the blue like “OMG OMG OMG he’s breathing hard, AHHHHH!”  A better picture gives doctors better options: they can choose to have you come in, admit the child back to the hospital for observation, or just have you wait and do more observation at home.  But it must be consistent: everyday at the same time. 

So part of what we had to do at the hospital was learn how to use the scale to properly weigh Nolan and how to use his sat reader.  It was relatively easy, we just had to be diligent with it.  I think, far and away, the worst part of the CHAMP binder is the “Red Page of Doom,” as I call it.  This is a page that gives you all the warnings, the “if you see this, call us IMMEDIATELY” kind of things.  And it’s quite a list.  If he has labored breathing, if he turns blue, if his sats drop below 75, if he doesn’t gain weight, if he’s sweaty, if he’s clammy, and on and on and on.  It’s enough to make you paranoid, honestly, especially when you turn on his sat reader and it starts out at like 72 before slowly and eventually climbing up to 76.  It’s like 45 seconds of terror.  A bit  of a spoiler alert, though: we learned, after a few freak-outs, that sat readers aren’t perfect machines.  You need to use a combination of the machine and your two eyes.  Sometimes the sats can read low, but if you look at the child, he isn’t in any kind of respiratory distress.  It took a few phone calls to the doctor to learn that lesson, so hopefully I’ll save you a freak out or two!

Anyway, while the CHAMP Program was a big responsibility, it was a necessary step to Nolan’s survival AND a necessary step closer to getting out of the Hospital.