Category Archives: Progressive Care
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!
As January 2012 gave way to February, I knew exactly what I wanted for my birthday: for Nolan to be home from the Hospital. Fortunately, we had some progress in this regard. One day my wife texted me that Nolan was going to be moved from CVICU up to Progressive Care. Like I mentioned in my last post, this was absolutely bittersweet. I mean, while no one wants to be in an ICU for any reason, we felt pretty spoiled by the CVICU staff: they took awesome care of Nolan AND us. Every night I was there, I was asked by a staff member if I would need a sleep room. I wouldn’t, because I had to be home with the other kids, but the gesture was nice nonetheless. On the other hand, going up to Progressive Care was a clear sign that he was getting closer and closer to coming home!
A little later on in the day, my wife texted me Nolan’s new room number. I had a break in the day so I called her to ask how everything was going. Her reply: “I don’t really like this floor as much.” When I asked why, she said that the nurses had more patients than the 1-on-1 care we got at CVICU and that it was lengthy periods of time between someone coming in to check on Nolan.
I hoped that things would improve and this was just a temporary bump. I HOPED. But when I got home, Bekah confirmed what she mentioned earlier. So I scarfed down dinner and headed down to the Hospital. I got up the Progressive Care floor, having never been there before, and was pretty amazed. There were a TON of rooms…and it was super-loud. Lots of noise in the hallway and people talking in nurses stations and whatnot. Definitely not the peace and quiet I was used to in CVICU. Regardless, I went to Nolan’s room and found him asleep…and alone. That was pretty depressing. I looked around for a nurse but couldn’t find one. So I went to the nurse’s station and waited and waited until someone decided to notice I was there. I asked for my son’s nurse and was told she’d be in to the room momentarily. I waited…and waited. Finally the nurse came and I asked her the same set of questions I’d ask the CVICU nurses: how was his day and what is his weight? The nurse gave a non-specific “He’s having a good day” and then said “Let me go look up his weight, I’ll be right back.” Yeah, she didn’t come right back. About an hour later she returned with a scale to weigh him. Ugh. Was this was Progressive Care was like? You gotta be kidding me! His room was much smaller than his previous one, so all his bouncy seats and whatnot took up a ton of space, to where you almost couldn’t move around.
After the weigh-in, I didn’t see the nurse again for the rest of my visit until I was ready to leave. I went to the nurses station to get the phone number for that floor, so I can call routinely during work hours and get updates on Nolan. To make it worse, I had to go home and leave Nolan there. On my way out I saw his nurse…I practically begged her to check on him routinely since he was going to be alone. She assured me she would. I hope she did.
On the way home, I was really bummed out. I couldn’t get the thought of my almost 2-month old laying in that bed all day with very little interaction in terms of nursing visits. He went from being rocked by CVICU nurses to being practically ignored. That night, I couldn’t sleep. I was consumed with trying to figure out how to get Nolan some more love and affection when I or Bekah couldn’t be there. I didn’t have a ton of PTO time for work, so I couldn’t take time off…maybe they’d let me work from the hospital? No, that wouldn’t work. It was so frustrating.
I went to work the next day and called Progressive Care about 4 times to check on Nolan. I’m sure they got annoyed but I didn’t care. That’s my son. You know what they say about the grass being greener…well so far, the grass definitely wasn’t greener…