Keeping Things Exciting: A Trip to the ER

As if things haven’t been exciting enough this month, Zane and I took a trip to the ER yesterday. We didn’t begin there. In fact, I tried very hard to keep us away from the place.

Early Monday morning—we’re talking 3:00am—Zane woke up upset and crying. Basically, he didn’t stop for 40 hours. Sure, there were brief moments where he tried to rally. But it was mostly upset. And, because I know him so well, I could tell it was related to extreme pain.

I tried some home remedies to see if I could narrow down the source of the pain. 1) I stopped his feeds and replaced them with Pedialyte, thinking he may have stomach issues. 2) I also gave him Tylenol, which was pretty much hit or miss. 3) I kept his urology appointment on Monday, which had been scheduled a couple of months ago, because I suspected his latest UTI hadn’t gone away with the recent script of antibiotics. 4) Then, I took him to his pediatrician yesterday to see if he could get to the source of the problem. 5) The pediatrician sent us to the ER because he couldn’t find anything on thorough exam. He believed the hardware in Zane’s back may have shifted, and he wanted x-rays.

After a 4-½ hour visit in the ER, which included an IV, catheterization, blood draw, and x-rays, everything came back normal. The ER doc asked if I wanted to have Zane admitted so the hospital staff could run more tests. However, she didn’t know exactly what those tests might be. I chose to go home. My initial thought—before calling the PCP yesterday morning—was that Zane had back pain from moving around so much in the past week (he’s become quite the active kiddo lately). So when we finally got home, I went with my initial instinct: to give him narcotics to ease the pain.

Right now, it is 4:00am. Zane’s been asleep since 8:00pm or so, only waking once with upset. He received another dose of meds at that time. So—all that said—I still don’t know what’s hurting him. I’m going to give him a couple of days on the narcotics and see how he is. If he doesn’t improve, or if he takes a turn for the worse, we’ll go back to the ER.

The Road to Recovery

Zane was discharged from the hospital on Friday after 11 days of being inpatient. While the surgery itself went well, Zane struggled with acute respiratory failure, which took him on a journey through bipap, oxygen supplementation, breathing treatments, oxygen saturation monitoring, and a capnography study. But after a few nights and days on room air, the team on the airways floor felt it was safe to let Zane come home.

It will be a slow recovery since he’s still experiencing pain. Personally, I cannot imagine how horrible it feels to have your spine straightened in addition to living with internal hardware and dealing with the pain from incisions. Poor kiddo.

On top of that, it appears Zane has yet another UTI. I took him to his pediatrician today. The doc has decided to wait for the culture to grow—or not—before making a decision about antibiotics. Before we headed out to the doctor’s office this morning, Zane had another horrid seizure—much like the one he experienced in the hospital. It lasted over three minutes, so I gave him Diazepam. The sweet boy can’t seem to catch a break. And yet…he smiles. Clearly, he’s happy to be home.

Zane will remain out of school for at least the next two weeks in order to continue his recovery. When he does return to school, the staff will need to be trained on new ways of positioning, transferring, and seating Zane. We’ve been told he absolutely loves the swing at school. Unfortunately, he can’t use it anymore because it won’t be supportive enough for his spine L As for right now, Zane is getting a lot of rest and watching more movies than he’s seen in a long time. Big brother is jealous, but my suspicion is that Zane would rather be in school than at home recovering from a major surgery.

Hospital Stay: Day 10

Today marks day #10 of being inpatient for Zane. It’s been hectic over the last three days, which is why I haven’t had time to update the blog.

So here’s an overview since Monday.

Tuesday: Zane still struggled with respiratory. He had lots and lots of secretions. Around noon, his respiratory therapist came in and started treatment for him. But she left, never finishing it. He still attempted to cough and had major nasal congestion. So at 12:30, his o2 sats dropped. First they dipped down to the mid 80s, then into the low 80s. The alarm on the monitor went off. No one came. Then they dipped further, hitting a low of 69. No one came. For a half hour. No one came. No one was in the hallway. All the nurses were MIA. Zane did not appear to be in respiratory distress, but still. Long story short…IT had emailed staff that the pagers would be down, but the nursing staff failed to check their email. I vented to the doc on the floor, Zane’s nurse, and the RT. This was not okay. What if he had been in respiratory distress? 

Wednesday: J hung with us in the hospital room for half the day. We played Hangman and Go Fish, then he took off with Grandma and Grandpa for the rest of the day. I got into it with Zane’s Support Coordinator who is completely worthless in her position. She’s done nothing to get services for Zane (nursing, PT) over the past year. When I asked for the name and number of her supervisor, I heard a shift in her tone of voice. As of today, we’re getting somewhere with finally getting in-home supports. Squeaky wheel and all.

Overnight was a nightmare. Zane’s nurse was not only useless, but she was incompetent. To begin with, Zane was set up with a nasal cannula and a separate monitor to conduct a capnography study (one that measures the exchange of co2 and o2). This already looked like it was a disaster in the making. The machine was set up to alarm each time the nasal cannula came out of Zane’s nose. And it came out. A lot. I mean, the kid didn't want it in to begin with. 

At 11:00, I requested Valium for Zane. His nurse gave it to him. But she left the med port on his extension tubing open, so all the medication, the water flush, and some of his overnight feeding gushed out onto his bedding. So no pain relief for Zane for another three hours since she couldn't be certain how much may or may not have gone into his stomach. When I changed and positioned Zane shortly after she left (one of 6 diaper changes and positioning changes I did on my own last night), I noticed it. Had I not been there, hours of his feeding would have wound up on the floor and in his bed.

Throughout the night, the capnography monitor alarmed. I’m guessing 20 times between 11:00 and 5:00. Much like the desatting problem earlier in the week, no one came in. Had it not been for me replacing the nasal cannula, the study would have been for nothing. In addition to this, I was the only one who repositioned him and changed him during the night. I only had 3 hours of interrupted sleep. By morning, I was very curt and grumpy. So Jeff brought his work to the hospital and unsuccessfully attempted to work from here.

During rounds, Jeff learned that the capnography was normal, and Zane is now being weaned off of easy pap and his inhaler meds. He’s heading in the right direction. And…it looks like he’ll have nursing care at home soon. As for PT, he’s still on wait lists for at least four different places.

I know a lot of this update illuminates the complaints I have with Zane’s care. But, as a whole, the nurses and case managers and doctors here have been amazing. More than not, Zane has received great care. His medical team has proceeded with caution in terms of Zane’s release, wanting to be sure he goes home with the appropriate pain management and respiratory supports he needs to be comfortable.

If all goes well tonight, Zane will be discharged tomorrow.

Thanks to everyone who provided support, sent healing thoughts, and said prayers. A very special thanks to my parents for taking J for the week. Without you, an already challenging (and at times downright difficult week and a half) would have been so much harder. 

Life is (Not So) Good

Things were looking up for Zane as we woke up in the hospital this morning. He had a good night last night, maintaining his oxygen saturation levels on 1.5L of oxygen, and he didn’t desat at all.

Mid-morning, Zane’s personality began to reemerge. He was pretty interactive and gave me his first set of smiles since surgery last Tuesday. It was so refreshing to see his beautiful, bright face. It looked as though things were well on the way to improving.

At 10:00, I started getting things ready to move Zane out of bed. I planned to have him sit up through his feeding and watch a movie on the room’s TV. The Child Life team had just delivered some new DVDs and a recharged CD player. All seemed promising and good. But just as I was removing Zane’s pillows and leg sleeves (meant to prevent thrombosis), he seized. For at least four minutes, which is the longest seizure I have observed with him. Ever. He was beyond miserable afterward, and his heart rate spiked significantly. The nurse administered Diazepam, and he finally settled down after a half hour or so. The seizure foiled my plans to get him up; he slept for over two hours in a deep and dreamlike slumber.

He seems to be stabilized now. I notified his neurologist of the seizure. The nurse believes it happened because surgery and the after effects of it have lowered his threshold for seizures. From the sound of things during rounds today, he’ll be inpatient for at least a couple more days.

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.