Happy Birthday and the Little Things

 Happy Birthday to my beautiful 8 year-old boy!

  

I never really know what to write or post on your birthday because, really, words cannot effectively state how much you mean to me and how truly lucky I am to be your mom.

In the past, I’ve displayed slide shows and pictures, some years written only a brief message, other years nothing at all. So I stayed up at night, wondering what I should write—if anything at all. A lot of this blog is devoted to your milestones, which made me think: there is so much more to you than the big things that happen in your life. In reality, it’s the little things you do that bring so much joy like…

The raspberries you make

And your love of rock and roll

The way you hold my hand against your chest

When you’re not ready to let go

The unconditional love you have for brother

Your love of

Swimming

Explosions

And the “P” on your spinner

How you always find the vacuum hose

Or choose Maisy over Eric Carle

Your smile that definitely lights a room

Or your happiness expressed in air piano

J loves it when you study your hands

We all smile when you follow our drink cups

I like the wrinkled brow you make when you’re unhappy

Or when you eat too fast and get hiccups

There is so much more about you

The little things we appreciate

We’re so blessed to celebrate with you

On this day that you turn eight

Some Big Things

It’s been nearly two months since my last post, which can only be explained by how very busy I’ve been with work and life in general. Zane’s blog has slipped down the rungs of my to-do list.

So a lot has happened in the last two months, and it’s really all pretty positive.

Zane’s pain and trip to the ER in October were due to his spinal surgery. Nothing related to the hardware, but rather to the muscles undergoing excessive strain. Zane doesn’t realize when he’s overdoing it—and sometimes I push him a little too hard in his exercises, too. But Zane’s pain—when he has it now—is controlled with ibuprofen.

Zane now has a home health nurse for sixteen hours a week. She is so sweet and wonderful with Zane. Having her here has given me extra time to get things done and has allowed me to spend time with the rest of the family. Zane also has a home physical therapist. It took a threatening call to Zane’s case manager during his hospital stay, but he now has in-home PT once a week, and his therapist is excellent! Her goal for Zane is to eventually walk, which ties in well with my personal goals for him, as well as one of his IEP goals.

Zane has been back to school since the tail end of October. His second grade class is amazing with him. There is one girl in particular who is super sweet to Zane. In fact, all the second graders made cards for Zane while he was in the hospital. They truly are a special group of kids. I am so happy with his new school. It is the perfect place for him.

Since preschool, Zane has been eating food for taste on and off. In the past, he has always regressed due to digestive issues (mainly, throwing up the food he ingests). But in the past couple of months, Zane has done so well with eating by mouth (and with feeding himself) that we made a special appointment to see the dietician. Zane's formula prescription was for six cans a day via g-tube. But the dietician has reduced his tube feedings by one can with the possibility of reducing his tube feedings further as he progresses with oral eating. It looks as though that will happen sooner than later. He is now eating a twice a day and enjoying a variety of pureed foods. He is so independent now that he doesn’t want anyone to feed him. Zane wants to do it himself—and he does it really well. The only thing he needs practice with is loading his own spoon.

Tomorrow (on his birthday), Zane is getting his new wheelchair—a Zippy Tilt-In-Space. His old one has been slowly falling apart for a long time, so it will be so nice to have a shiny new one that fits him better.

Zane’s seizures have been under control since the beginning of November, and he is back to his happy-go-lucky self.

Thanks to those of you who have checked on Zane during our absence from the blog-o-sphere. You’re the main reason I write these blog posts, and your love and concern for Zane means everything to us.

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!