Desattin'

Earlier today on Facebook, I promised another update. Those quick FB posts are pretty easy to achieve. It takes a little more time, thought, and sleep to attempt a thoughtful blog post. Because one thing I was light on last night and going into today was sleep.

Zane had a pretty eventful night and morning. He didn’t drift off to sleep until 11:00. He was doing some desatting, so the nurse and the respiratory therapist were working to bring him up without putting him back on Bipap. The overall goal is to have Zane off Bipap at night in order to find out what his baseline is with co2 exchange. But because he was on oxygen only, he struggled a bit, desatting into the low 80s throughout the night. Both he and I didn’t have a restful time. In fact, my wake-up time was 4:30 when I decided to just shower and get ready for the day. Then things took an eventful turn around 5:30 this morning, when Zane’s oxygen saturation numbers dove down: 70s, 60s, 50s, reaching their lowest point at 45. The alarm went off, and the nurse rushed in—a bit panicked. She called in the head nurse. They decided Zane was not truly in respiratory distress, but was significantly congested, thereby impeding oxygen flow to his system. He didn’t turn blue or show clinical signs of trouble and, in relatively short time, he was back into the low 90s.

Jeff stayed with Zane during the day, so I could go home and get some uninterrupted sleep, and J stayed with my parents. The daytime was good for Zane where he maintained good o2 saturation on 1.5-3L of oxygen throughout the day. In the afternoon, his heart rate—which has been really high—slowed down to a more manageable level. He’s making progress ever so slowly. And his slow progression is considered normal for a kiddo with neuro-muscular issues.

We’re heading into another night now. Those are usually a little tougher in terms of congestion, so we’ll see what happens. We still haven’t a clear idea of when he will be discharged. I’m hopeful it will be sometime early this week.

Starting tomorrow, I need to begin the process of putting supports in place for Zane when he arrives home. I plan to speak with the hospital’s case worker to see if there’s a way to get him home PT and home nursing care—both of which I have tried to obtain on my own with absolutely no success at all.  Zane's case manager is useless. Arizona gets a failing grade in my book for providing in-home support services to kids like Zane. Colorado was much better at it. On the flip side, the level of expertise and medical care here in AZ seems far superior to what he had when we were in CO. Give and take, I guess.

Thanks to my parents for all of their help through Zane’s surgery and post-op care. You’re the BEST!

Slow and Steady

We are now three days post-op, and quite a lot has happened.

The main thing coming out of surgery for Zane has been finding a balance between pain management and maintaining the integrity of his respiratory system. It’s one of those Catch 22 things with him. Zane has a sensitivity to narcotics. Meaning, when he takes them, they tend to suppress his respiration. Yet he really needs them because he’s been through a serious surgery and is experiencing a whole lotta pain.

Yesterday, during the day, he was on a combination of supplemental oxygen (between 2 and 4L) and the Bipap. At night, after the respiratory therapist deep suctioned him (didn’t like that one), gave him his inhaler treatments, and administered easy pap, he went back on the Bipap throughout the night. Through yesterday and last night, Zane received a staggered variety of medications: a PCA (patient-controlled analgesia—the narcotic with the clicky button you can hit to self-administer narcotics every eight minutes), Valium, and Lortab. Last night was a comfortable one for him. No alarms—that I heard.

When the critical care team rounded today, I listened in. They decided that, based on his morning x-ray and his oxygen saturation levels, he would be moved to the floor. So today, he was taken off the catheter, had the central line removed, and stopped receiving the PCA. He’s now in the airways wing since he continues to require Bipap at night.

The plan going forward is to continue to create a balanced approach to pain management while weaning him off both the Bipap and the oxygen. Once Zane is off Bipap, they will conduct a capnography—or carbon dioxide study—of his lungs to find out whether or not he needs to go home with Bipap equipment for nighttime.

Today also marked the first time I removed Zane from bed and positioned him in a chair. We need to retrain ourselves as to how we transition, position, and handle Zane from now on. It’s no longer okay to allow his back to twist. The PT coached me in moving him out of bed. Somehow I managed to get him in his chair without incident. Zane sat up for one hour. But when the time rolled around for him to return to bed, she was long gone. So the nurse assisted me with Zane’s transition back to bed. She held the tubes and wires while I lifted and positioned him. He wasn’t happy with me. I wound up having to hold him at one of his incision points.

Right now, Zane is sitting up again, semi-watching Kung Fu Panda with his brother. But...mostly he's sleeping in his chair.

Though we’ve moved to the floor, we still have a nice view of the city. Yesterday, the room looked out on Chase Stadium. Today, we have a visual of the entire downtown area. I leave the shades open at night, so I can see all the sparkle of the city along with some of the stars.

Still not sure when Zane will get discharged. We’re still approaching his care one day at a time.

Thanks to those who have checked on Zane and to my family and friends who have come by the hospital to visit. It means a whole lot!

He Needs Time

Zane’s surgery went well, but that doesn’t mean life is good for him right now. Sure, there’s the pain. But there’s also some extra challenges going into recovery. But I’ll get to that shortly.

Zane was taken back for surgery at 12:30. The surgeon told us once his part began, it would take three hours. The operation was expected to start around 1:30. At 2:30, the OR nurse called saying they just started because they had trouble getting an atrial line—something they never did get.

At 3:50 (with the update board showing Zane still in surgery), a nurse called us back. The surgeon had only been “on the job” for an hour and twenty minutes. We filled with dread, more like borderline panic. My heart rate immediately accelerated. I figured he didn’t make it through surgery. The situation and atmosphere felt dire. We prepared ourselves for the worst while we waited in a room for Dr. K (the surgeon) to arrive with his news.

I saw him emerge from behind the doorway, and his pace was so slow, I figured he was putting off the delivery of his grave news. But then Dr. K came in, closed the door, and told us everything went well. It was then I realized he was just a slow walker.

The rooms in the PICU (pediatric intensive care unit) were full. So we waited for three hours in recovery. But Zane was still on anesthesia. He had only opened his eyes twice at the sound of Jeff’s voice.

Once Zane was settled in the PICU, and I had given the doctors and nurses the low down on the various systems (neuro, cardio, renal, etc), we were able to turn off the lights and relax. But not for too long. At 3:30, I awoke to the sound of his monitor alarming. I looked at it to see the oxygen saturation dropping into the 80s. The nurse kicked up his oxygen, but the rate remained unresponsive. She paged the on-call resident and the respiratory therapist. They took a chest x-ray, determined he had atelectasis (which is like a collapsed lung), and hooked him up to a Bipap machine (bilevel positive airway pressure, which is a non-invasive way to provide ventilation to the lungs. He’s still on it as I write this post.

The plan today is to try to take him off of it and see how he does. They are trying to avoid reintubation, but they also want to make sure his left lung recovers and functions well. Zane is on two forms of pain medication: a generic form of morphine and Valium. He needs time.

As always, we appreciate the outpouring of support, positive thoughts, and prayers from everyone. I will continue to update when I have more information.