Monthly Archives: December 2013
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.
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.
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!
The start to Nolan’s Progressive Care stay was pretty frustrating for us. The day after he went to that floor, I was preoccupied with the thought that he was completely alone when Bekah or I weren’t there with him. Here he was, almost 2 months old: he couldn’t press a call button when he was in pain…all he could do was cry, and I couldn’t help but think there was no one around to hear him. God, that made me such a wreck. It was all I could think about at work that day, I was pretty much useless.
I continued being the Incredible Sulk for much of the day until I was able to hop in the car and haul down the hospital. I was like a man possessed: I just wanted to get there and spend every second holding him and loving on him, just to make up for every moment he was alone. When I got to the hospital, I checked in with his nurse and asked how his day went. She said, “Oh Mr. Nolan had a very good day: we started this program called the Cuddle Crew today and volunteers held him for hours.” I wanted to fall over right there. The stress, the worry, it all left me like air out of a balloon. Then suddenly I was happy and hopeful again. I thanked the nurse and went right in to spend time with my little man.
I can’t express how much thanks we owe to the volunteers on the Cuddle Crew. They gave their free time to invest in Nolan…and other kids too. Sadly there are some kids on the Progressive Care floor who have zero parents around…ever. They’re there alone because there is no one there for them. And these volunteers make a REAL difference. I had the peace of mind of knowing someone was there to love on my Nolan…and it meant the world to me. Thank you, Cuddle Crew, from the bottom of my heart!
And I can’t say enough wonderful things about Levine Children’s Hospital Volunteers as a whole. I remember one Saturday getting a knock on Nolan’s door: it was a teenage volunteer, who brought a cart of goodies and asked if I needed anything. She had toothpaste, deodorant, books, candy, snacks, you name it. All the things to make our stay comfortable. When you spend a ton of time in the hospital with a sick child, you often forget to take care of yourself too. That’s where the volunteers come in. They would come and bring toys for Nolan and were always asking if we needed anything. They were awesome. Thank you all!