Category Archives: Care at Home

Time to Burst the Bubble

Friends!   March is here…and you know what that means: warmer temperatures, flowers blooming, birds singing, spring training baseball, sunshine….and the end of the dreaded flu season.  Yes, the flu is the bane of every heart family’s existence…you know that during the winter months you lock yourselves up at home and try your best to stay out of places with too many people.  For us the biggie was staying clear of church and watching it on our church’s Roku app.  It definitely wasn’t the same, but we go to a big church with a ton of people and it just increased the chances of any of us – especially Nolan – getting sick.  If you recall reading in this blog, Nolan caught parainfluenza in November 2013 and ended up in the hospital for a week.  .  So yeah, the flu is no joke.

But here in the Charlotte area, the weather is finally starting to warm up a bit and we can hopefully look forward to popping the flu bubble

Bubble

This past weekend we took the kids to a museum called Discovery Place Kids, which had a bunch of fun stuff for little ones their age.  The kids had a blast:

DiscoveryPlace1

Nolan especially loved the Water Table: he got himself (and people around him) completely soaked:

DiscoveryPlace2

 

While official flu season may be close to over and you start emerging back into the world, remember that your heart kid can still catch a lot of big, bad, yucky crud, so you have to be smart about it.  The first – and easiest – thing you can (and should) always do is practice good hand hygiene.  Wash your hands regularly and have some good hand sanitizer handy.  If people come visit, make sure they practice good hand hygiene too.  Next, use your smarts: don’t go where people are sick and don’t let people touch your child’s face and get all up in his or her grill with their coughing and snotting.  Yuck.  Finally, remember that people will get over it if you can’t go to everything they invite you to.  I know you find yourself explaining it over and over, but they’ll live.  Stick to your guns.

We were fortunate not to have to battle the flu this winter.  We’re looking forward to getting back to life as the weather begins to warm up.  As we greet the spring and say bye-bye to flu season, we can soon say:

CancelTheApocalypse

Croup Doggy Dog

I have to say, Nolan really enjoys heart month…he enjoys February so much that he decides to visit his friends at Levine Children’s Hospital with a visit to the E.R.  Happened last year due to low O2 sats caused by ear infections…on Sunday he decided to make it two years in a row.

Let’s back up a little bit: the crud has been going through our house Old Testament plague-style…you know how it is when you have young kids.  One gets sick and then it’s like mass pandemic in your own home.  Our oldest had a bout of strep throat a few weeks ago and then eventually I caught one of those gross, phlegmy colds (which I seem to now get like every 4 weeks or so).  We tried REALLY hard to keep Nolan from getting sick, so it was lots of hand washing and hand sanitizer and things seemed to be going ok.  Well the other night I was doing a late feed on Nolan and he started coughing…except it was this weird cough…like a seal.  Yes, like “hork hork hork” kinda seal.  It gave me some pause and I stood there in his room keeping an eye on him, but it didn’t seem to bother him too much and when he was awake, he was his usual self, no coughing.

So on Saturday, for Valentine’s Day we had some friends over the house and it was a great night…we had a blast and Nolan enjoyed himself and then went to bed easily.  At 5am Sunday morning I awoke to his aquarium-style seal show, except this time it lasted a lot longer and he was sounding very agitated.  I picked him up and took him into the bathroom to check for the tell-tale respiratory issues (blue nail beds, feet, lips, etc), but alas everything looked fine.  But he was breathing a little fast and wouldn’t calm down or stop coughing.  At this point my wife was up too and trying to help calm him down while we hooked him up to his O2 sat monitor.  It showed a pretty high heart rate and sats in the low to mid 70’s, which is below his typical mid-80’s.  Our local hospital system has a handy phone app where you can check operating hours and wait times, and I checked to see if the Pediatric Urgent Care nearby was open, but it wasn’t slated to open until 10am.  So we had a choice to make: do we wait it out until 10?  Do we take him to the regular 24-hour urgent care or local ER (where we’d get the “What the heck is HLHS?” question)?  Or do we just take him to Levine Children’s Hospital’s ER?  We decided on the latter, so I got changed and put his car seat in my car.  When I got back inside, Nolan was dressed and wearing his coat and hat…and go figure…Nolan was happy as could be.  Little stinker!

So off we went, better safe than sorry.  On the way there I called his cardiologist’s office…I knew no one would be there but that I would be routed to an after-hours operator.  I gave him the run-down and said to just pass along the word to the cardiologist on-call and they could call me if they wanted.  I just like them to be aware when Nolan is about to go to the ER.  You wouldn’t have known Nolan was sick because he was in the back just talking and laughing and being a ham.  We got to the ER at Levine Children’s Hospital and luckily were the only people in the waiting area (thank God).  We were greeted very warmly by the front desk person and were called immediately back.  The nurse took Nolan’s vitals and was VERY sweet to him.  By this point I had Nolan’s fav show (Yo Gabba Gabba) loaded up on my phone to keep him calm and the nurse was just chatting with him about DJ Lance, and Brobee, and all the other characters on the show, which made Nolan (and me) happy.  The Charge Nurse came in to introduce herself and let us know that it was currently shift change for the physicians, but they would be in as soon as possible.  I really appreciated that communication.  So we hung out and watched more Yo Gabba Gabba:

CroupDoggyDog

Bill, Nolan’s RN for the morning, came in to get Nolan situated and comfortable: he was really friendly and attentive and kept us updated on everything.  Eventually three physicians came in to see him over the course of probably the next 30 minutes.  They were all really awesome: the first physician said it sounded like he had croup, but that since she couldn’t hear him cough she wasn’t 100% sure.  Luckily I told her I had a video of Nolan coughing so she waited patiently while I pried my phone away from Nolan and played the video…immediately she knew it was croup.  She said another doctor would come in just to be sure.  The next doctor was named Dr. Magill and she was incredible: you could tell she took the time to review Nolan’s medical record. She knew his physician, knew his ideal O2 sat levels, and knew about his previous ER visits.  We discussed, in particular, his visit 2 Novembers ago when he had some fluid on the lungs.  I told her that this bout of illness was way different from that and he was nowhere near that level of sick.  She listened patiently to me and definitely took into account my thoughts on it (Which I really appreciated) and said she just asked because she was trying to determine whether or not to get Nolan a chest x-ray just in case.  She felt, though, that it would be best not to agitate him and passed on the x-ray.  While Nolan didn’t acknowledge it or realize it, I KNOW he appreciated that too!  She was really sweet and attentive to Nolan as she checked him out, even letting him play with this light-up bird she had on her stethoscope.  Dr. Magill then explained what croup was (a viral condition that causes inflammation of the upper airways) and ordered some tylenol for a little bit of fever and a steroid to help relax some inflammation and help with the cough.

The third doctor came in and was just as sweet.  She explained that the steroid was long-acting and he would only need one dose: by the time it wore off he would be past the worst of things anyway.  She recommended a vaporizer if we had one but otherwise was ready to discharge us due to Nolan’s really good vitals.  I mean just LOOK at those sats!

HighSats

As we packed up to head back home, Bill returned and helped me get Nolan situation.  He reviewed more info about croup with me and some more discharge instructions.  The Charge Nurse also came with some stickers for Nolan and his brothers.  As we walked out of there together, Nolan was in a happy mood and so was I.  It was nice not to be admitted for something this time around, and we managed to get home just before 9am.

I say this all the time and can’t say it enough: Levine Children’s Hospital is the cream of the crop…but this visit to their ER was just exceptional.  It seemed like everyone there made it an absolute priority to make us comfortable and to make sure Nolan was enjoying his short stay.  I know that waking up at 5am and making a trip to the ER was not an ideal way to spend my Sunday morning, but it was beyond what I could imagine.  Nolan is doing quite well now: the meds helped a great deal and the vaporizer is helping too…we couldn’t have done it without that awesome LCH staff!  Thanks guys!

Ok I’m Gonna Go Full Nerd For a Minute

Ok so am I the only heart dad out there whose kid (feeding tube or not) is kinda like the Borg from Star Trek?  Yes…I went there.  Growing up I LOVED Star Trek the Next Generation…loved it.  I watched it every night before bed and watched all the movies.  For those of you who are all like “Oh Lord here he goes talking about space ships and lasers and chew-tabacca,” hear me out for a moment.  So in Star Trek the Borg was this alien hive mind, so to speak, who would pretty much obliterate other alien peoples and assimilate them into their hive, implanting robot parts into their body.  Sorta like Pimp My Ride but with aliens…and body parts.

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So where am I going with this?  In Star Trek the Borg were by far the most fearsome enemy because they had powerful weapons AND they would acclimate to any weapons you threw at them.  Shoot em with a phaser?  Yeah it will kill 3 or 4, but then they would all acclimate and it wouldn’t work anymore.  So you had to keep changing things.

Yeah, that is SO Nolan when it comes to eating.  He’s like a little 20-pound Borg without the robot parts.  I remember when we started this tube wean journey, he was tearing up some Banana-Mixed Berry baby food.  That purple gloppity goop was his favorite, and I could get him to relatively eat the mess out of it.  It became my go-to food whenever he wasn’t cooperating with something new.  But then Nolan went full Borg and was like “Pfft…that don’t work on me, pops!”  Then it got to the point where he flat-out refused to eat anything we gave him, even if it was like chocolate pudding or cheesecake.  I mean C’MON SON, you gotta want that stuff right?  Nope.

So there was a time there where we fought with him and he shook his head for everything we tried to give him.  It was kinda like Star Trek First Contact (great movie, BTW).  It was a struggle and sometimes you just wanted to jump out of your chair and be like:

ForTheLoveofGod

But then…THEN something shook loose, and I honestly can’t tell you what it was.  Now he’s back to eating a little better and even trying new things like crackers, mashed potatoes, peanut butter cheesecake, etc.  And he’s not taking in any PediaSure at all, which is a major win.  So why the change?  No idea.  Am I afraid he’s gonna go full Borg again…absolutely.

So tell me, Heart Parents: do you struggle with this?  If so, how do you hold back the Borg invasion?

Y U No Understand?

Ok heart parents: you know how this goes: there’s lots of well-meaning people in your life who just have no clue what it’s really like to have a heart child.  It’s not a cold, it’s not a boo-boo…it doesn’t just go away, it won’t get better with cod liver oil or elderberry syrup.  It’s a life change and it makes the life of a parent much different.  And lots of well-meaning people just don’t get it.  I wish people can understand that extreme heat or cold is very difficult for heart babies, so it makes summer beach trips and anything in the winter a challenge. 

The other day I was participating in a webinar that discussed a patient-and-family-centered approach to patient safety and care.  They brought up this really awesome example that a parent of a disabled boy created that showed all that it took to raise a disabled boy.  It was an amazing “map” that highlighted all the things she had to deal with in order to care for her son.  It was mind-blowing.  I couldn’t get it out of my head so I took some time and made a Nolan Care Map:

Nolans Care Map

And honestly, this is just scratching the surface.  People want to know why our life is so crazy-busy?  Take a look.  Pretty overwhelming isn’t it?  Nolan has a lot of stuff going on and there’s lots of things we keep track of and lots of things we need to be mindful of down the road.  And trust me, I have the easy end of this deal: my wife is an absolute superhero.  She gets 3 kids up and dressed and fed and goes off to multiple appointments throughout the week, sometimes with appointments daily.  She works through physical and speech therapy with Nolan all while trying to keep two other kids occupied.  She keeps the house in order and has been an amazing cook too.  I love her and we couldn’t do any of this without her…in fact, there’s no one I’d rather do this crazy life with.  Heck, I get the easy end of this deal with going to work. 

I made the map in hopes that people could better understand what it’s like to raise a heart child.  You should take some time and do one of your own…it puts things into an amazing perspective.  I’m hoping that it helps people see that the life of a heart parent is busy, expensive, time-consuming, and stress-inducing.  It’s not the normal  life of a parent, not by a long shot.  I’m not saying that parents of healthy kids don’t have a busy life or stressors, but it’s definitely apples and oranges, the way I see it, and I just want people to understand.

Y U No

Connect the Dots, la la-la la-la

When I was a kid my favorite Saturday morning show was Pee Wee’s Playhouse.  Yes, I said it.  That show was hilarious, and even moreso now that I’m an adult.  But that’s not what this post is about (per se).  Do you remember whenever he would do the connect the dots bit?

peewee

Hilarious.  The day before I moved down to NC, my best friend and I were hanging out at my grandmother’s house and we found an old VHS tape of Pee Wee’s Playhouse.  As soon as he busted out with “Connect the dots, la la-la la-la” we LOST it.  In fact, any time someone mentions “connect the dots”, I think of Pee Wee.  Thank you America.

So what am I getting at?  In the world of heart babies there are lots and lots of dots, depending on your kid.  Nolan has a whole lot of dots in his life to connect: cardiology, G.I., physical therapy, speech therapy, cranio-facial, etc.  The big problem I’m finding is that these dots just kinda float around there with nothing to connect them.  Now that Nolan is done with surgeries for a couple of years, I’ve been thinking a lot about what could make things better for Nolan and other heart babies.  Here’s an example:

A week or so ago, Nolan was having an absolute cow at home.  He was fussy and didn’t sleep well.  My first thought was that he might have an ear infection, so I called his pediatrician’s office at 8am one morning for a 9:30ish appointment.  Since I had to go to work, my wife took him in.  Since I called that morning, he wasn’t able to see his normal pediatrician, but we figured that would be ok.  Sure enough, he had a double ear infection; but what happened prior to the diagnosis is what got me thinking.  So a nurse came in to check Nolan’s vitals (and not the typical nurse who sees him) and my wife mentioned that he has HLHS.  Her reply, “What’s that?”  Yeah, that’s a problem.  I’m sure doctors and nurses have to deal with a lot of people assuming they know about every disease ever discovered, but c’mon son…he has a chart, why don’t you give it a look-through before going in to see him?  And that’s one of the things that infuriates me as a heart parent: when people come in to see him and don’t bother to look over his info and I find myself saying the same thing oooover and oooover again.  Well my wife then asked, “Aren’t you going to take his sat reading?” to which she replied, “Well…I guess, if you want.”  UGH.  Again: CmonSon

As Nolan’s parent I am more than happy to advocate for him and other heart kids, I really am.  But sometimes I feel like we as his parents are tasked with the sole responsibility of attempting to coordinate his care.  Each of his physicians and therapists do a great job in their own regard, but it’s like they exist on their own separate islands…islands they can’t seem to venture away from, so it’s up to me and Bekah to put Nolan on our back and swim island to island.  So how do we connect those dots?

I think the answer lies with cardiology.  Nolan’s heart condition will always be the biggest issue, and I absolutely love his heart team, they do an incredible job.  This is not meant to be critical of them, it’s merely a suggestion and one that I think can benefit ALL heart kids in ALL heart programs: the heart teams need to take the first step in connecting the dots.  Imagine when you’re about to leave the hospital after your child recovers from the Norwood Procedure: if your cardio team asked, “Who’s your child’s pediatrician? Would it help if I talked with them and offered to educate them about your child’s needs?”  WHAAAAAT?  It simply gives my child the best shot at getting the best care. 

Let’s take it even further.  Let’s say you’re traveling and – God forbid – something happens to your little one.  You can avoid the “Durr, what?” answers from a different care provider if maybe your doctors provided you with a packet that laid out everything about your heart child in a doctor-specific packet.  That way you can say, “Here is what his doctor says about his condition.” 

It would be great for G.I to keep up with speech therapy or for G.I. to keep up with cardiology.  And maybe it does happen to a small degree, but I think more could be done.  I know as a heart parent it’s annoying/exhausting when you see a new doctor and mention his sats are in the mid-80s and they’re like “OH MY GOD!”  It’s enough to care for a heart baby and the advocacy associated with it, but a little help in that department wouldn’t hurt.  Everyone could stand to learn more and communicate more.

Making the Interstage Better

I’m going to say early on that this is merely an opinion post.  On Sunday we got to celebrate Nolan’s graduation from the CHAMP Program and it was really exciting.  They developed a really nice way to improve care during the insterstage (the period between the Norwood Procedure and the Glenn Procedure).  I have read a lot online lately, though, that pediactric cardiology teams are working to continually improve the insterstage, and that’s a GREAT thing.  So having been through this period already, I got to thinking about how we can make the interstage better.  The best idea I’ve come up with, thus far, is one that is gleaned from my work experience.

As I’ve mentioned in a blog post or two, I currently work at a hospice.  What makes hospice different from some other kind of care is that it’s considered an “interdisciplinary program”.  What the heck does that mean?  Well it basically means that hospice approaches care for both patient AND family/caregiver with a team effort.  Hospice patients and families have access to doctors, nurses, CNAs, social workers, chaplains, volunteers, and bereavement counselors.  That’s pretty dope, right?  I agree.  So here’s what I’m thinking: heart centers should REALLY look into utilizing an interdisciplinary approach for their interstage families.  Let’s take a look:

  1. Physicians: this one is obvious.  During the interstage there will be frequent appointments with your child’s cardiologist, probably once a week.  This is crucial to insure heart function remains very good.  I think it’s safe to say this one won’t change a bit, and I’m ok with that.
  2. Nurses: a lot of programs differ when it comes to at-home nursing.  We actually had a nurse come out to the home a few times, but she was more concerned with making sure we knew how to properly weigh Nolan, draw his meds, take his sat reading, and give his meds and feeds.  Nothing too earth-shattering.  After a few visits she stopped coming because she felt we had it under control.  Unfortunately to me, that’s not enough.  Questions come up all the time and I think we could have really utilized a nurse on a more regular basis…if anything just to give us peace of mind.  I think this is the really important link for an interdisciplinary program: if nurses can’t make regular visits, then I think they should make regular calls.  Don’t put the ball in the family’s court to always be the one to initiate contact…I think it should be a two-way street.
  3. CNAs: this one is a little tricky because I don’t know where a CNA would fit into a heart program.  In the hospice world they assist with bathing, feeding, etc.  I’m thinking that a CNA could be someone to come and keep an eye on the baby to provide some respite care for the parent(s).  I know that at times my wife was home with 3 kids at a time.  While she’s a trooper, she could’ve definitely used a break.
  4. Social work: this is where I think an interdisciplinary program would provide the biggest benefit during the interstage.  No, the social worker isn’t someone who is just making sure your child is fed and clothed (though they will be checking for that too).  The social worker’s job is to help you as parents through any kind of psychosocial issues associated with your child’s care: the stress, the frustration,  the anger, the hurt, the sadness.  Imagine having someone to talk with about it, even if it’s just once a month by phone.  I really think MANY strides can be made in this area.  Heck, social workers can even help families with other issues such as navigating the world of SSI benefits, how to get help with bills, where to find help if you can’t buy groceries, etc.  It’s a MAJOR win.
  5. Chaplain: chaplains are awesome because they’ll work with you no matter your belief system.  There are a lot of difficulties, spiritual or not, associated with caring for a child with a severe illness.  It’s taxing and will deplete you physically, emotionally, and even spiritually.  Chaplains can assist with “unpacking” all those feelings and offering you support through your journey.
  6. Volunteers: I’ve written a lot about the Cuddle Crew at Levine Children’s Hospital and how they were an absolute LIFESAVER.  They took care of Nolan in the hospital whenever we couldn’t be there.  I think the same concept in-home would be awesome and would provide the same respite services, technically, as a CNA would.  Imagine having someone come once a week or every other week to hold you baby while you took a shower or even took a well-earned breather?  Awesomeness.

Sounds pretty good, right?  I know it does to me.  What will it take to incorporate something like this into a heart program?  Probably a ton: personnel, funding, etc.  It’s a lot of work.  But this is all about ideas, right?  It’s my hope that one day something like this could be a reality so heart families can enjoy the same excellent support at home that they received in the hospital.  And I’m willing to bet we would see a lot more success for babies during the interstage as well.

So what are your ideas about improving the interstage?

CHAMP Graduation!

Some time ago I wrote a post about the CHAMP Program at Levine Children’s Hospital (read it here: https://hlhsdad.wordpress.com/2014/01/08/the-champ-program/).  Long story short, the CHAMP Program was designed by the heart team as an effort to keep heart babies healthy and surviving during the period between the Norwood Procedure and the Glenn Procedure (aka the Interstage).  From Feb 13, 2013 to August 7, 2013, we weighed Nolan everyday, read his pulse ox, and recorded it in a binder.  After the Glenn Procedure was complete, we were told we could throw the binder away.  Did we throw it away?  Absolutely not, but it was a great feeling to know he was past this point and on to bigger things!

Well yesterday was a very exciting day as we got to bring Nolan and join in with 5 or 6 other families to celebrate our little heart warriors with a CHAMP Graduation ceremony at Levine Children’s Hospital! 

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The Ceremony was a lot of fun: we got to see all of our friends from the LCH staff, including Nolan’s absolute fav nurse:

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And even Dr. Maxey, who did Nolan’s Glenn Procedure:

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It really makes a heart daddy proud to hear everyone gush about how well your little one looks.  It’s always great to get the opportunity to see everyone when it’s NOT for an appointment or, even worse, an admission of some sort.  It was really good to meet other heart families as well: some who we’ve met before, some who we’ve been communicating with on Facebook, and some who have even read this blog (I was genuinely touched by that).  I think it’s good to get heart families together like that so we can continue to encourage each other…and show of our little monsters too!  Of course, another cool thing was having Greg Olsen in our class as well, since his son finished the CHAMP program just before Nolan did.  I can’t say it enough, but it’s always really cool getting to chat with Greg: he takes the time to talk with everyone and be the best help possible.  I know he leads an incredibly busy life (and man, did the Panthers have an awesome year or what?!), but he always takes the time to talk, and I always enjoy it:

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Nolan also got some media love that day (check it out on his facebook page: facebook.com/SupportTeamNolan).  He was loving all the attention, I know that’s for sure!

Overall it was an awesome time, and it was a great honor to meet all the other awesome families:

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Most importantly, though, I’m really glad we all got to do it as a family:

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So congrats to all the CHAMP Grads!  Onward to bigger things!  Get a job!  Just kidding.

Getting Into a Routine

While having a heart baby is much different than having a healthy baby, a lot of things remain the same.  The biggest is that you need to develop some sort of routine.  We got pretty good at ours: meds in the morning, meds at mid-day, meds at night; filling the feed bag, mixing formula; appointments.  The only thing we didn’t have down to a science was sleeping.  By this stage, Grant was sleeping well, but Nolan was doing a terrible job of sleeping, and we just couldn’t have the twins in the same room because Nolan would wake up Grant and it would be horrible.  The worst part is that I made it my job to take care of Nolan when he would fuss during the night, especially since my wife was home all day with multiple kids: it was the least I can do.  That would leave me as a total zombie for work because I would only get a few hours of sporadic sleep.  Sometimes I couldn’t stay up no matter how hard I tried: I remember one night where Nolan was fussing and I had gotten practically no sleep over 3 or 4 straight nights.  I got out of bed, bent over him, and then just froze.  It was like brain shut my body off and was like “Hey idiot…you need sleep!”  I remember standing up and stumbling back to bed and telling my wife, “I am so sorry babe, I just can’t do this tonight.” Then I just crashed in the bed and didn’t hear a THING until the morning.  How did we do it all?  No idea…Grace of God.

Another important part of the routine is cleanliness.  It is imperative that you try your best to keep the germs off your heart baby because they are so susceptible to illness…and even a cold can put your little one back in the hospital…it’s serious business.  So how did we do this?  Well for one we limited how often we went out with Nolan.  For a long time we just went to the doctor and that’s it.  If people came to visit, we insisted they used hand sanitizer before interacting with him.  If they were sick, we politely asked them to stay home.  And if people wanted to interact with Nolan, they needed to keep off his face.  A few other important thing to remember is your work and school clothes.  Everyone knows that daycares are breeding grounds for germs, so whenever our oldest came home from preschool, we made sure the first thing he did was change into clean clothes.  Since I work in a healthcare environment, I could also potentially carry some nasties on my clothes, so I would also change when I got home from work. 

CleanHands

Like I’ve said before: this was our new normal…and it will be yours too.  You won’t have tons of parties, go on lots of baby vacations or have fun trips to the park.  Early on you need to develop a good routine and learn everything you need to learn in order to make sure your child has the best chance to survive and thrive!

Living in Grand Central

AintNobody

Upon being discharged from the hospital, we were told we’d be getting a wealth of help at home: nursing visits, physical therapy, and speech therapy.  Combined with the myriad doctor’s appointments that Nolan had, there was a ton going on and I’m amazed my wife kept up with it all.  She’s amazing.

So basically the nursing visits were incredibly simple: they wanted to be sure we knew how to draw and administer his meds, how to record his weight and sats, how to do his feeds, etc.  They only visited a few times because they figured out quickly that we had those things pretty much under control.  Once I commented that the nurse must see some pretty non-compliant families.  She said, “Oh you can’t imagine…”  It was nice to feel like we were doing something correctly, and after a few visits she stopped coming back because she wasn’t needed.  That was a bummer because we were hoping we’d get regular visits from a nurse that would help with his care…no dice. 

Physical therapy was there to help him with his arms and legs and prepping for sitting up, crawling, and eventually walking.  Nolan spent over a month laying still in a bed so he needed a lot of work.  Unfortunately I never got a chance to meet the physical therapist because I was always at work, but she tired to work on his wrist and tried to work with him on tummy time once it was OK’d by the cardiology team.  One big note: you won’t be able to lift your heart baby under his arms post-surgery for several weeks due to the chest closure.  This is serious stuff, just scoop him up until you get the ok!

Finally we had a speech therapist come to help Nolan learn to eat by mouth.  Before we left the hospital we were told that in-home speech therapists were very few and far between so we would have to stay on them to get a therapist out to our house, particularly in the county we live in.  Luckily we got someone to come out rather quickly.  Unfortunately, though, this speech therapist SUCKED.  She was about as friendly as a potted plant and always seemed annoyed she was working with a baby.  I remember one day she said she had to take his vitals and I said, “The nurse just left and took his vitals, we wrote them down and you can use those,” and she replied, “Oh good…I don’t do well taking kids’ vitals.” THEN WHY ARE YOU DOING THIS JOB?!!!!  Ugh.  She was often rude and short with my wife, and I don’t play that.  And she spent an insane amount of time just doing these face-touching exercises with Nolan: rubbing his cheek over and over and over and over….and over and over.  Eventually after forever she tried to actually put something in Nolan’s mouth…and due to his really bad reflux, he spit up all over her.  HA HA.  From then, though, she seemed really annoyed and distant…and we were getting nowhere.  It was really frustrating. 

This was our routine, though…I wished Nolan would just come home from the hospital and in a couple weeks be a normal baby.  But this was a new normal: it was going to be a long, hard marathon.  And like I mentioned many times already: it was up to us to be sure he got the best care possible.

Appointments!

Appointments-Appointments-Everywhere

This is the part where I’m sure you want to clone yourself.  After they boot you out of the hospital, after your initial freak out and hyper-vigilance, you will have to deal with the tsunami of appointments.  Nolan had a cardiology appointment every week, then he had GI appointments, regular pediatrician appointments, then there were appointments with nurses at home, speech therapy at home, and physical therapy at home.  It was nuts and my wife did an incredible job juggling it all since I had to be at work all the time. 

I did go to Nolan’s first cardiology appointment, though, and it went well: they were very happy with his progress so far.  But man what an effort to pack that kid up with the CHAMP binder, sat reader, feed pump, and all the regular baby stuff on top of it.  WHEW.  Eventually the amount of appointments will calm down, depending on your child and his or her progress.  This will also be the stage where you realize your life as a parent will no longer be a “normal” one…it’s going to be crazy, but every day your heart warrior wakes up is a great day: remember that.