Category Archives: Progressive Care

Three Dreaded Letters: F-L-U

No, fans of Florida Lutheran University, I’m not hatin’ on you (does that school even exist?).  I’m talkin’ the flu…the ever-dreaded flu.  I remember one year I got the flu for my birthday and it absolutely sucked, it felt like I got hit by a train that was hauling a load of semis.  Everything hurt.  So as you can imagine, the flu for a baby – much less a heart baby – is horrible. 

Let’s back up a little, though.  All this hoopla started when Nolan began to exhibit quite a bit of fussiness, including a serious lack of sleeping (oh yeah, he began sleeping through the night prior to this, thank you JESUS).  My wife finally took him to the pediatrician, who diagnosed him with an ear infection.  OUCH.  Sooooo we got the antibiotics and ear drops and began to treat him for that.  Few days go by and still he’s an absolute beast.  So we take him back.  Now it’s a double ear infection.  Double-ouch.  More meds, and all of that.  He’s still not getting better.  In fact, this time his eyes are looking a little swollen and he’s coughing and looking overall miserable.  We take him back for the third time.  This time the pediatrician is concerned and insists he gets admitted to Levine Children’s Hospital for further observation.  While the thought of having to go into the hospital again sucks, it was honestly the next logical step, because if they didn’t get him better at the pediatrician’s hospital, I’d probably be looking to bring him to LCH anyway for a deeper look.  We both said that was fine…after all, I had some time to spare.  You see, I was actually at this appointment because I was working a 1pm-9pm day since I would be teaching a training class from 6-9.  I called my boss and let him know that Nolan would be going to LCH and I would miss the first part of my work day, but that I would be making it in for the training class, since no one else could teach it.

Then everything got a little nuts.  Because Nolan’s oxygen sats were a little low due to him feeling crappy, the pediatrician wanted to be on the very safe side by putting him on oxygen and sending him to the hospital via ambulance.  Wait, what?  My first thought was “I could get him to LCH before an ambulance would even get to this office!”  Probably true, but moot.  She insisted, so we begrudgingly agreed.  Bekah had to get Grant taken care of and find someone to pick up Hudson then meet me at the hospital, while I got to ride in the ambulance with Nolan.  It was really kinda depressing to see them come in for Nolan with a gurney and all that.  Then, for a few minutes, it got hilarious.  You see, they don’t actually lay Nolan on the gurney, they actually put him in his car seat and then strap THAT to the gurney.  No biggie, right?  Well for several minutes, the two EMTs couldn’t get Nolan’s car seat strapped in well enough to the gurney.  They weren’t being idiots or anything, it was just a different challenge than what they’re used to.  It was hilarious and we all laughed. 

Then we got in the ambulance and hauled it to LCH.  It was weird seeing everything out of the back window.  Not to mention that you REALLY see how people drive like morons.  I told the EMTs that I could never do their job, I’d be too busy screaming at other drivers.  All the while, Nolan seemed very entertained by his ride in the ambulance…I know his oldest brother would be JEALOUS.  I know all this was to be safe, but it felt like a waste…no to mention what the bill for this would look like.  At this point we still didn’t know what was wrong with Nolan…the doctor wanted to rule out infection or sepsis (which is crazy dangerous)…and to be honest it did worry me a little.  I didn’t want this to be the thing that dealt Nolan a serious blow. 

We finally got to LCH and were brought to the Children’s ER.  Fortunately (I guess) it was Silly Hat Day at the Children’s ER so everyone looked NUTS lol  They really know how to lighten a mood, though.  It was humorous to see a nurse in a minnie mouse hat taking Nolan’s blood pressure.  Bekah eventually showed and they drew some blood from Nolan and a urine sample.  His pee was VERY dark, which showed dehydration.  The nurse he had was very nice and VERY knowledgeable, and she got him hydrated via IV very quickly.  One of the nurse practitioners from the cardio team stopped by and asked us some questions and recommended Nolan be admitted to Progressive Care due to their familiarity with heart kids.  We were happy to have her on our side.  Overall, though, we spent hours answering the same questions for like 2 or 3 different doctors.  Meanwhile Nolan was still pretty miserable.

Unfortunately I had to leave at that point so I can drive an hour, in rush hour traffic, to do this class for work.  I grumbled the whole way since I didn’t want to leave Nolan.  I got to work in my street clothes, apologized to my class for my slummin’ look, taught the class, then left.  I stopped at home to get clothes and all that before going back to LCH for the night.  By then Nolan was moved up to LCH.

I got there and Bekah was very frustrated: Nolan was writhing around in pain in the bed, just screaming and crying and no one was doing anything.  I was not happy.  And you know how I do – this guy came back:

AngryBear

I stormed out of the room to the nurse’s station and found his nurse.  It was actually someone Nolan has had before and she’s a REALLY good nurse, so I was like “I apologze, I think you’re a great nurse…but if someone doesn’t do anything to comfort him I’m gonna freak.  AND I MEAN NOW.”  So she called a physician, who looked like he was 14 years old, to the room and I again made it perfectly clear that Nolan was in pain and something needed to be done.  They agreed to some benadryl and tylenol and eventually he settled down and slept.  We all slept for a little bit. 

Eventually we found out Nolan had something called parainfluenza, a type of flu, and there wasn’t anything to do but make him comfy and let it pass.  That sucked.  I had to fight and yell and scream and scowl to get him comfortable.  Eventually the nurse was just like “This is what we’re gonna do” and she did it.  That’s what I like. She made a plan, stuck to it, and Nolan was all good.  Eventually this parainfluenza put Nolan in the hospital for 5 days…slowly he started to get back to himself:

NolanFlu1

Eventually he started to look better and better and the team continued to make him comfortable:

NolanFlu2

On the 5th day, Nolan was finally well enough to come home.  I felt so bad for him: with the double ear infection PLUS the flu pain, he was just a wreck.  He didn’t sleep and neither did we.  It was a brutal stay in the hospital for us, probably one of the worst.  But eventually Nolan fought it off like the tough guy that he is.  And it reminded us that with heart babies, even a cold can knock them out.  This was proof.  So remember, keep your hands clean, especially during flu season, because you don’t want to go through what we did!  Keep your kids away from sick people and keep them at home if you need to.  It will be better in the long run!

Nolan Makes the Big Time

In a much earlier post, when Nolan was first moved up to Progressive Care after his Norwood Procedure, I mentioned a group called the Cuddle Crew.  These were volunteers who would come and hold babies when their parents were unavailable, or they would hold the baby to give the parents a bit of a break.  It was a wonderful program and those volunteers gave me such a peace of mind, because I knew someone would be there with him…and they would hold him for HOURS.  They loved that kid.

Well one day we were contacted by one of the Nurse Practitioners on Nolan’s heart team.  She said the media was interested in doing a story about the Cuddle Crew and they also wanted to highlight some families.  She told me that when she asked the volunteers who they wanted in the story, they overwhelmingly said Nolan.  WOW.  Look who’s Mr. Popular.  I remember the nurses telling me that the Cuddle Crew would fight over who would get to hold Nolan…and I thought she was joking.  Apparently, she wasn’t!  So we definitely agreed to the interview and brought both twins to Levine Children’s Hospital. 

There, I got to meet some of these cuddle crew volunteers – Earl and Pam – for the first time ever.  I couldn’t thank them enough…and I told them how much their volunteering meant to me.  After a few minutes I realized Earl & Pam looked reeeeeally familiar.  As we got to talking, I figured it out: I met Earl & Pam just the week before at a Chamber of Commerce event that I was participating in for work.  SMALL WORLD. 

Anyhow, the reporter asked me some questions about the program and what it meant to me and then interviewed Earl and Pam while they wrestled with our crazy twins, who were about as squirmy as could be.  I appreciated the opportunity to thank those volunteers.  The Cuddle Crew began just before Nolan was moved up to Progressive Care, and it was started by that Nurse Practitioner and a Cardiologist, because they realized  that heart babies need more care than the typical child on that floor.  We are so thankful for that!  And it would also prove to be a great opportunity to promote CHD awareness in the community. 

Check out the story and video here: http://charlotte.twcnews.com/content/news/701327/levine-children-s-hospital-s–cuddle-crew–helping-take-care-of-infants

Hold Up, Back Again

We came home from the hospital with Nolan with quite a bit more freedom: we didn’t need to weigh him or take his sats daily, though we would still keep up with it from time to time.  As always, we looked out for the other warning signs: labored breathing, any illness, etc.  We did notice that Nolan was incredibly fussy when we got him home, and we know to attribute that to the post-Glenn headache, aka “Glenn Head.”  That part definitely sucked: he was really irritable and we tried so very hard to make him comfortable. 

As our first week home started to wind down, we noticed that Nolan was even much more fussy than usual.  My wife decided to take his sats and noticed they were in the mid-70’s…which was his post-Norwood number.  After the Glenn he was supposed to be in the mid-80’s.  We kept an eye on it, only to see it trending downwards some more til it was in the low 70’s.  Finally my wife decided to go with her gut instinct and call the cardiologist.  She was told that they were extremely busy and to go take Nolan to our pediatrician instead.  My wife refused to accept that, knowing that the pediatrician was just going to freak out and call the cardiologist anyway.  She basically told them, “I’m leaving now and I will wait til I see someone.”  I left work too and headed down that way to meet up with her.  I gave my wife tremendous credit for going with her instincts on this one, since my first thought was just to observe him a little longer.  We finally got seen by a cardiologist, who took a listen to Nolan and said he thought Nolan might have some fluid on his lungs that built up after surgery and that he’d get an ultrasound just to look at the heart function, just in case.  GREAT.

So off we went to the ultrasound room, where we both worked to keep Nolan calm, which was becoming a near-Herculean effort with his feeling crummy AND the Glenn Head.  The doctor came in and noted that the heart function was perfect, there was no problem with the Glenn procedure, but that even in the ultrasound he could see some fluid on the lungs.  SOOOOOOO unfortunately, Nolan had to be admitted to Levine Children’s Hospital…a whole week after we came home from the Glenn Procedure.  How frustrating.  I mean we came home absolutely elated with his progress and now this.  Hopefully the stay would be long.

We were wrong.

Nolan underwent a chest x-ray to see the extent of the fluid buildup and then was put on some diuretics so he could basically pee off all that excess fluid.  He’d gone through it before post-Norwood but that was an immensely different story than now.  Nolan was placed under what’s called “Droplet Precautions”…which basically had everyone coming into the room donning a mask and gown, just in case Nolan’s fluid issue was due to a communicable illness (it wasn’t, FYI). 

So the days became long and dull.  We sat and waited and basically Nolan would pee like a full camel.  With the time I took off from work for the Glenn Procedure, I didn’t have much to take off this time, so I had to do my old work-home-hospital shuttle.  As the fluid came off, Nolan started getting back to his normal self: back to kicking his feet when he was happy, so that made me happy. 

In a funny-when-I-look-back-on-it moment, our good friend “Dr. Doom” was on call during one of the days I was there, and she came in for her daily rounds.  As I saw her in the outside room gowning up, I was like “Oh God, here we go again.”  I have to admit I was wrong.  She came in friendly as ever and talked ever so sweetly to Nolan.  At one point Nolan reached out and grabbed her hand and she played a little bit with him and even leaned down super close to talk sweetly to him.  MIND.  BLOWN.  So yeah, I guess she wasn’t so much Dr. Doom anymore.  It was like a different person…this makes 2 times in a row she has been kind to us and Nolan, and she was helpful and even made sure I had all my questions answered.  It made me feel bad for all the stank I was emoting towards her. 

Anyhow, one day in Progressive Care turned into two, which turned into one full week before we finally brought Nolan home.  How’s that for ironic?  This fluid-on-the-lungs thing kept him in the hospital longer than the Glenn Procedure did.  Sheesh.

Glenn Recovery

We were really happy that Nolan’s Glenn procedure went splendidly…in fact, he was up in Progressive Care the very next day!  Now we had to settle in for his recovery period.  While things looked good now, I remembered the 2-month recovery from the Norwood Procedure.  All-in-all, Nolan did very well. 

NolanPostGlenn2

His color looked great, he was off oxygen, and he was overall a happy little boy.  He was a little bit fussy when the “Glenn Head” would kick in, and I felt so bad for him, but the staff did an awesome job keeping him comfortable.  At one point some teen pageant queen from SC came to pay him a visit and gave him a dolphin pillow pet.  That was very sweet: Nolan really digged her…maybe he’ll look her up sometime lol

The great part about this procedure was that we were able to hold Nolan pretty much right away (just no picking him up from under the arms til the chest healed up) and I had quite a bit of time on the weekend to spend with Noli Poli and I could tell he was just DYING to get out of there…and so were we.  Overall, the comparison between the Norwood recovery and the Glenn recovery was night and day.

On our 6th day there, we were told Nolan would be ready to go home!  And boy was he ready:

NolanPostGlenn3

What a change…look at that happy boy!  And he was rockin’ some sats in the mid-80’s.  Life was good for our little warrior.  Bekah and I were super-happy too…no surgery again for a couple of years, God willing.  Now we could really focus on Nolan’s quality of life: in particular his feeding and physical therapy.  There was still a lot of work to do, but MAN…2013 had been a heck of a year and it was barely half-over!

Before we left the hospital, one of the Nurse Practitioners came to visit and gave us some great news: NO MORE CHAMP BOOK!  We no longer had to record his stats and weight daily!

 

Nolan Has the Glenn Procedure

On July 17, 2013, after all his necessary pre-sugery work, we brought Nolan to Levine Children’s Hospital.  I was pretty tense.  Deep down, I knew and had faith that everything would be ok, but there was also the memories of the long recovery last time, with all its ups and downs and the fear that came with it.  Luckily for us, Bekah’s college roommate Arianne came to stay with us and support us through this time.  It was good to have someone there. 

We took Nolan to the same room that he was in before his cath.  They took all his vitals and we worked on keeping him happy.  At this stage he was such a smiley little guy and whenever he was happy, be would kick his feet rapidly: I called it the Happy Bike.  The anesthesia team came in to meet us and chat with us a little bit about the procedure.  From there we prayed for our little guy and then it was time. 

If you remember from way back in this blog, I talked about us walking with the nurses all the way down to pre-op with Nolan before his Norwood Procedure.  We wouldn’t be doing that this time, and I wasn’t sure why.  Instead one of the anesthesia team members held out his arms and I handed over our 7 month warrior…my hero…to be cut open for yet another time.  While I was clinging to the faith I had, it was no less heartbreaking to see my little guy go.  Next, though, it was time to go to that stupid waiting room that I hated so much.  We checked in with the lady at the desk and saw that another of our friends, Karen, was already in there waiting for us.  It was quite the surprise because we weren’t expecting her.  It’s always good to have company during this stage. 

And just like the first time we waited: we talked, we read, we watched tv, surfed the interweb, stared off into space.  And periodically we’d get updates from the O.R.: anesthesia was completed, the first incision made, everything’s looking good, etc.  Finally we got word that the procedure was complete and that Nolan was doing well, but it would be a little bit before we got to see him.  I took that opportunity to go to our favorite Malaysian Restaurant to pick up some lunch.  We ate and were very happy, but we were dying to see Nolan.

Finally we were allowed up to see him in the CVICU.  It was crazy being back on that floor with its familiar sights and sounds and people.  What was different this time was that Nolan was doing AWESOME and all those nurses were thrilled to see him and how well he was doing!  Nolan was still a little out of it and was intubated, but all signs pointed to him doing well…AND His chest was closed!  YES!

NolanPostGlenn1

We held his hand and talked to him as he came to.  He was in some discomfort, but he was looking great…even his color was amazing.  The nurses and the rest of the heart team were very happy with his progress and the goal was to remove his breathing tube and get him up to Progressive Care within a day.  And that’s what happened!  Less than 24 hours after surgery, Nolan’s tube was out and we were already out of CVICU, which was bittersweet.  Back to Progressive Care, where things were a bit more challenging.  This time, though, we knew what to expect. 

It was amazing how much better Nolan looked after the Glenn Procedure: his color was much better and not so pale, and his oxygen sats went from low 70’s pre-surgery to 85 post surgery.  YES!  Now for the recovery phase…one day at a time…

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

rocky2-champ-feature

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.

Dr. Doom Comes Through…

Nolan was doing well in progressive care, but due to him being intubated for so long, he had pretty much lost his sucking reflex and bottle-feeding was out of the question.  Speech therapists would come in from time to time to work on it, but he was getting all of his feeds via an NG Tube, which went into his nose and down to his stomach.  Nolan hated that thing: he would always try to pull it out, and when he would pull it out even an inch, he’d barf everywhere.  Nasty.  And he was a major league ninja about it too, you’d unswaddle him to change his diaper and BAM, that little hand would whip up and grab it.

According to the staff, they wanted him to take 75% of his feeds by mouth before not considering a feeding tube any longer.  Unfortunately that wasn’t going to happen.  I happened to be in the room one afternoon with Nolan, on a weekend, when a GI doctor came in to chat with me about what would happen with Nolan’s feeds.  He talked about something called a Gastronomy Tube, or G-Tube, which would have to be surgically placed.  Oh great, another surgery.  He assured me that this would be a safe procedure.  I know the surgeons said that losing the suck reflex is common after the Norwood Procedure, but I really didn’t think it would go this far.  Basically they’d have to go down his throat and then put a tube through his skin directly to his stomach.  A tube would be sticking out, which we would use for feeds and medications.  It was pretty sad to see Nolan go for another procedure…but I was hoping that he’d get this done the first shot.

When Nolan came back, he was asleep and had the tube sticking out.  It was held in place with this round disc, and it looked huge on him.  I felt bad for my little guy…he’d been through so much.  I was told that he would be in a little pain once the pain meds wore off but that he was scheduled for some tylenol for pain.  And you could tell once the pain meds wore off because he was CRANKY.  I tried my best to console him: talking to him, singing to him, consoling him, playing him music.  Nothing worked.  Then it was time for the physician on duty to do their rounds.  And just WHOOOO was on duty this day?  Doctor freakin’ Doom.  If you remember from an post early on in this blog, “Dr. Doom” is the doctor who confirmed that Nolan had HLHS and she did it in a completely cold, soul-less manner.  I REALLY didn’t like this doctor and there the doctor was on duty while my son writhed in misery.  GREAT.  The doc got an update from the nurse before walking to give him a look-over.  I had my guard up, like I was ready to go to war.  She turned to me and asked if I had any questions and I said, “I just feel like he’s miserable and in a lot of pain and he’s been like that for awhile.”  She looked at Nolan again, then turned to his nurse and asked about meds.  The nurse said he was scheduled for Tylenol a little later and Dr. Doom replied, in utterly mind-blowing fashion, “Well I can’t see why he can’t have some now.  He’s obviously in pain.”  Then she touched Nolan’s foot and said “Feel better, Nolan, you look great.”  And then walked out.  And Nolan got his meds.

What the what?  I was stunned.  This person who I so reviled for being terrible to us just did something nice for my son.  Don’t get me wrong, it wasn’t super warm or friendly, but it was the right thing to do and she did it without thinking twice.  I was shocked.  So did she redeem herself?  Not sure.  Sometimes I acted stank about her around other people, but sometimes I didn’t say anything at all.  It was an interesting introduction to the subject of forgiving someone…it planted the seed in my mind.

How He Loves Us

One of the cool features of Nolan’s Progressive Care stay was the TV in the room.  Sure, it had your standard remote/call button combo, but you could also plug it in to a keyboard and access movies, music, and websites.  That was pretty dope, so I worked it into my visits with Nolan.  I’d go to see him, turn on Pandora on the TV, and turn on the station for my church’s worship band: Elevation Worship.  Then Nolan and I would sit in a rocking chair and just rock and listen to some worship music for hours.  It would become the best part of my day by far.  Most of the time Nolan would sleep, but sometimes he’d just look at me for long periods of time. 

One day, though, things were different.  It’s funny because there wasn’t anything inherently different about that day: I wasn’t having a bad day, I wasn’t bummed out about anything…it was just a regular day in the neighborhood.  I had Nolan in my arms and we were rocking away in the chair.  At one point I just looked at him: marveling at his big eyes and his cute little nose.  And I whispered to him, “I love you so much, I would do anything for you.” Then BAM.  He did it again, God decided to show up.  Not physically show up, but more like make a PSA in my heart.  You’ll remember from https://hlhsdad.wordpress.com/2013/11/03/dear-god-its-3am-im-scared-and-i-dont-like-you-right-now/ that God did the same thing when I was struggling before Nolan’s surgery. 

Just like last time, the word was very still and quiet: “Now you see how much I love all of you, and you are all born broken.”  WOW.  And then – this is gonna sound weird – it’s like God gave me some kind of deep understanding of His love.  You know, we all know John 3:16…we memorize it, we see it on signs at football games, people put it on business cards.  But do we really know what it means for God to love with an overwhelming, totally-forgiving love?  Like do we REALLY know what that means?  I loved my son so much, I just wanted to pour out every bit of me to make him feel loved and whole, even though nothing I could do could make him whole.  But in that instant God used that example to show me what His love was really like.  All I can describe it as was heavy.  Really, really heavy, like the vastness and greatness of His love was bearing down on my shoulders to where I couldn’t stand the presser and was overwhelmed.  And that was just a glimpse. 

And just like that, I was back in the rocking chair in Nolan’s room with him in my arms asleep.  And on Pandora, the song “How He Loves” by John Mark McMillan came on.  Almost as if right on cue.  I was completely speechless.  And overwhelmingly moved.  I listened to the words of the song and played that whole experience over and over in my mind.  Oh how we take God’s love for granted, especially since we’re all messed up: not always physically.  I think no matter what we’re going through, we need to stop and really think about God’s love.  About how much He loves us in spite of the abuse and rebelliousness we hurl at Him.  His love is so strong and only He has the shoulders to bear it all.  Thank you God for your love.  Thank you for showing me your love in a hospital room.  Thank you for showing me there’s so much more than what’s in front of me.

How HeLovesUs

I Mean REALLY?

CmonSon

Once we began to acclimate to Progressive Care, thanks to Volunteer help, it became like a new routine.  Then things got stupid in a hurry.  When Nolan was born, his left hand/wrist was a bit limp.  We weren’t sure why, no one really was.  It was checked on multiple times while he was in CVICU, but nothing was broken or amiss, they guessed it was just weak.  So one day someone from the hospital brought him a brace for his wrist that would go on for a couple hours, then off for a couple hours.  Simple, right?  Wrong.  This is where Progressive Care turned into the Three Stooges.  Nurses would come in to put on his brace and say “Now which hand does this go on?”  As if it wasn’t OBVIOUS which hand was just flopping around.  OR, to make it worse, some of them would put it ON THE WRONG HAND!  Nolan was also on continuous feeds, and it never failed that a CNA would come in and ask “When was the last time he ate?” and it got to where I’d say things like “He’s on continuous feeds…see that pump in the bed with him?  The big one there?  That one.” 

It was frustrating, and I didn’t want to be rude.  But I know from working in the medical field that each patient, Nolan included, has a freaking CHART.  And if you read the chart you can find out lots of awesome things like the fact that he’s on continuous feeds or that his brace goes on his left hand.  WOW!  Imagine that!  It was like I was working with amateurs, though.  So I decided to take matters into my own hands and call the nurse manager for Progressive Care.  If you remember back in https://hlhsdad.wordpress.com/2013/11/01/you-have-a-say-in-your-childs-care/ I spoke with a nurse manager at NICU about Nolan’s care and the result wasn’t the best.  I definitely didn’t want a repeat of that, so I decided to choose my words wisely.  I told the Nurse Manager about the things that had been happening and how, to be honest, I wasn’t the most confident in the care he’s been receiving on that floor, but that I didn’t want anyone to be in trouble, I just wanted to be able to work together to ensure Nolan got the best care possible.  She was very nice and showed legitimate concern about the issues I raised. 

She called me back later in the day and said that, while remedial, her quick solution was to have Child Life print up a little poster called “ALL ABOUT NOLAN”, and I could write on there his likes, dislikes, which hand his brace goes on, yadda yadda.  I know, it seems silly to have to do that, but it was a step in the right direction for the team.  And would you know?  It seemed like it worked!  Things started getting less silly there and the frustration level went down.  The Nurse Manager even made it a point to check in from time to time to see how things were going.  It was so much different from the last time I spoke with a Nurse Manager, this was a positive experience.  But positive or not, remember this: you DO have a say in your child’s care.  If you don’t like how it’s going, say something!

AllAboutNolan