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.
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:
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!
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!
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…
It was coming up to that time: Nolan was fully recovered from his Norwood Procedure, he had a successful cardiac catheterization…now it was time to schedule his next heart surgery, the Glenn Procedure. We could definitely see Nolan getting a little stronger and gaining weight slowly but surely. While we looked hopefully towards the future, I’d be lying if I said I didn’t have some anxiety about yet another surgery for Nolan. The recovery for the first one took so much time and I didn’t think I could handle another lengthy recovery.
The cardiac team called us one day to talk about scheduling Nolan’s Glenn Procedure. They gave us the date of July 17th but noted that Dr. Peeler, the renowned HLHS surgeon who did Nolan’s first surgery was not available. I was like WHAT?! I mean Dr. Peeler is THE Man for HLHS babies and you’re gonna try to schedule a surgery without him? You gotta be freakin’ kidding me! No offense to Dr. Maxey, the other surgeon, but really?
So I called them back. I was like, “I don’t mean to offend anyone, but we NEED Dr. Peeler.” The scheduler replied, “Well Dr. Peeler will be on vacation and won’t be back for several weeks, and even then his schedule is booked up.” I sighed loudly. I felt defeated…and suddenly scared to death. I mean the Glenn Procedure is supposed to occur between 6 and 8 months of age. By July 2013 Nolan would be 7 months old…if we waited longer, it could be bad for him. So very reluctantly I agreed to keep the July 17th date.
We also had a meeting with Dr. Maxey scheduled…first off, let me say that I love Dr. Maxey, I think he’s an awesome guy and I’m thankful he’s on our team, but I was worried I’d offend him since I came prepared with questions. He started off by taking a look at Nolan and expressing how happy he was to see his progress. Then he talked about the Glenn Procedure and what they would be doing and why (See yesterday’s post for more info). Interestingly, he mentioned that the procedure will take about 3-5 hours, but only 45 minutes of that will be spent working on the heart itself. Amazing. He said a lot of time is given to prepare and to get through any scar tissue. He said “If you don’t hear from us, it’s ok.” Then he asked if we had any questions. So off I went: how many of these have you done? Was the last one? How many have you done by yourself? Then I apologized and he smiled and said it was ok: he understood we had the utmost care for Nolan and wasn’t offended. He told us he does TONS of Glenn procedures and has been doing them for a long time. I felt pretty satisfied by that…I mean, what other option was there, right?
And to be honest, even if it was Dr. Peeler sitting there in front of me, I would’ve had some nervousness too. There will never, ever be a time where sending your child for any surgery or procedure will be easy.
One thing to note, for all HLHS families out there who haven’t gone through the Glenn yet: Dr. Maxey did mention that the only bad thing post-Glenn is what he called “Glenn Head”. He said in essence all the blood from the upper body is now being re-routed and it brings a wicked headache that can last for a couple days to more than that. But he said it eventually goes away…oh boy…
The Glenn Procedure (or hemiFontan) is the 2nd of three open-heart surgeries for children born with Hypoplastic Left Heart Syndrome. This surgery occurs somewhere between 6 and 8 months of age. It is a surgery in which a detour (shunt) is created from the aorta to the pulmonary artery. The bidirectional shunt is performed by connecting the superior vena cava to the right branch of the pulmonary artery using fine sutures, and dividing or tying up the pulmonary artery. Now, venous blood from the head and upper limbs will pass directly to the lungs, bypassing the right ventricle. The venous blood from the lower half of the body however will continue to enter the heart (this will be corrected in the 3rd surgery).
The venous blood from the upper body is re-directed first, because that is the larger part of a baby’s body. As the body grows, the lower body becomes larger, bringing the need for the 3rd surgery (The Fontan).
Recovery for the Glenn Procedure is much shorter, on average, than that of the Norwood, and oxygen saturation will improve along with overall energy. Since HLHS babies operate with a single ventricle, the Glenn Procedure will decrease the overall volume load on the single ventricle.
So why is the Glenn Procedure done so soon after the Norwood? If you remember, the Norwood-Sano procedure places a shunt in the heart that is attached to the pulmonary artery. As your baby grows, so will his heart…the shunt, however, won’t grow and will begin to stretch. It will get to a point where both ends of that shunt will begin to narrow and you’ll notice your baby’s sats begin to trend downward just a little. This is one of the signs that it’s time for the Glenn Procedure and the Norwood is definitely not a long-term solution. In fact, during the Glenn Procedure, the Sano Shunt is removed.
For more information, check out this incredible video by the Children’s Hospital of Philadelphia (CHoP): http://www.youtube.com/watch?v=fUPVkKvPGe4