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.