Friday Update

Happy Zane

Zane woke up this morning in a good mood, showing signs of his happy self again. So we decided he was well enough to go to school. But on the ride there with dad and brother, he started fussing. He was in school for maybe an hour when I had to head to town to pick him up. While the drive into Durango is a very beautiful one, I am growing quite sick of the scenery at this point. Our drive to the school is a 35-minute one. There is only so much iPod I can listen to, only so many mountain curves I can navigate, before it gets old. So Zane has been resting for most of the day with the exception of the ride back to town to pick his brother up from school.

 

Zane’s pediatrician called from her vacation spot to check on Zane. How awesome is that? She reviewed all the supplemental things we should be doing for him to make him well: extra fluids, probiotics, extra elderberry, and respiratory medications. Hopefully, he will rest enough throughout the weekend to be well enough to see his way through a full day of school on Monday.

 

Thanks again for the good thoughts and for the prayers for Zane and his well-being.

Our Second Home: The Pediatrician's Office

It’s been a rough couple of weeks. In the last ten days, I’ve been to the pediatrician’s office five times, which is especially challenging since we live 40 minutes away. We had strep, walking pneumonia, a UTI, and a cold in our household. In the last two days, I made the trip to the pediatrician’s office twice for Zane.

 

Yesterday the school called saying he was exceptionally fussy and crying a lot. I drove into town and checked him out of school. We headed straight to the doctor. Aside from the fact that he didn’t want to be picked up, looked at, or touched, there were no obvious symptoms of what was bothering him. They tested his urine, which was clear. We figured it may be a reaction to the antibiotic, so we formed a plan and returned home where he fussed until bedtime.

 

This morning, he awoke with a snotty nose. I had scheduled a follow-up appointment for this morning in the event he was no better. In the middle of the night, I had lovely thoughts of being able to cancel it and finally get something done outside of chauffeuring kids back and forth from home to town. The dream did not become a reality; we trekked back into town.

 

Anyway, Zane is now being treated for a virus (respiratory/GI) with extra fluids, saline, and respiratory medications. He’s currently sleeping. Again. Obviously, he needs the rest. I am tired. Oh, so tired. And I am sick, but have not had much opportunity to take care of myself. Thankfully, all I have right now is the common cold. Hopefully, things will take a positive turn health-wise for us. I’d be happy if I didn’t have to see another physician for the rest of the year. Unfortunately, Zane has to go in for another UTI follow-up next week. Ugh.

Our Pediatric Visit

Zane saw the pediatrician today. It was a loooonnng visit. Two hours in the office. I reviewed all the possibilities with her:

1. paper eating
2. head banging
3. dad being sick with strep
4. urinary tract infection

Paper eating didn’t seem to be a medical issue this time around. 

 

Head banging: she’s certainly not thrilled about this happening again this year. But based on Zane’s flushed cheeks and demeanor, she thought it looked more like an infection.

 

Ears and throat were clear. Initial strep findings: negative.

 

Urine culture: positive. It appears Zane has a UTI despite the fact that the October 2011 surgery was supposed to be 98-99% effective in preventing further infections. Why can’t our family fall into the 1-2% category when it comes to the good stuff?

 

Zane’s now on antibiotics (as is his dad). We’ll wait for the final cultures to grow before consulting with the Denver urologist. Needless to say, I am pretty upset. This may mean there are possibly two surgeries that were for absolutely nothing.

 

Now I want to bang MY head on the gym floor.

Misery

Zane has not improved at all over the weekend. I would take him to the ER, but the emergency room in our area is useless when it comes to someone like Zane. In fact, many families in our area have had horrible experiences with the hospital here in town. The personnel there know so little about pediatrics that they send almost all kiddos to Denver or Grand Junction. The last two times we took Zane to the ER, the doctors looked to us to answer the medical questions, provide insight into what we think is wrong with Zane. Isn’t that their area of expertise? Not ours?

 

So…while it is torturing me to see Zane so sick and miserable, I prefer to wait until tomorrow when we can see his pediatrician. She knows Zane and can often get to the bottom of what his issues are. Plus, she obviously knows the latest bugs traveling around.

 

Zane woke up with his left eye fused shut. I know that indicates possible pink eye, but there’s no pinkness or redness, no swelling either. From my days of teaching, I don’t remember pink eye causing this degree of misery in a child. He paid Jeff one courtesy smile over the weekend, but—other than that—he’s been crying, fussing, making faces, and wanting to do nothing but be left alone in his bed since Friday afternoon. He managed to sleep through the night, but has awoken a completely unhappy child. And we have absolutely no idea what the problem is. At first I thought he had a low-grade fever, but I honestly think our thermometer is on the blink. One minute it says his temp is 99.3; the next, 95.5.  

Why do these things almost always happen on the weekend?

Something is Wrong

Zane has been absolutely miserable since the end of the school day yesterday. We’re not sure why. The problem is, there were a number of factors that may have caused his misery, and he doesn’t have the words or a communication system to tell us what it is.

 

1) He ate paper in school yesterday. (Stomach issue?)

2) He banged his head hard on the PE floor yesterday (head trauma or pain?)

3) There are tons of bugs floating around in the elementary-school-o-sphere (sickness?)

 

It’s hard to say. We did the requisite checks: temperature, throat, bumps on the head. All seem fine. We administered the requisite care: heating pad to the stomach, Tylenol for pain, Pedialyte for rehydration. Nothing is working.

 

He cried almost immediately after school ended yesterday and didn’t stop for probably two hours. Now each time we look at him, he makes a pouty lip and gets ready to cry. It’s so hard to see him this way and not know what to do to help him.

 

One thing is clear: there has to be more training at school. While I know both the paper-eating and head-banging incidents were accidental, they cannot happen again. This is precisely why I am controlling, hovering, overly protective, and afraid to let go. Because when I do, things like this happen. Pretty soon, my trust in others protecting Zane is going to be next to nil.

 

Okay, I’m through ranting. Zane is usually so very happy and easy-going. This is so not like him. Something is clearly wrong. If any other Trisomy mommies (or daddies) have any ideas, please let me know.

Letting Go

As I sit here tonight with both boys tucked safely in bed, I cannot help but fret a bit. Tomorrow is the first day of letting go. Zane is in kindergarten. At a new school. I've been hanging out with him for the past few weeks, making sure everyone who cares for him is properly trained. They are not fully there yet. There have been mistakes: broken hearing aids, some minor issues with the tube feedings, not knowing him well enough yet to know what he's communicating. There will be more. There always are when someone else takes the reins with Zane. It's not me being critical, it's simply reality. But they'll get better with time.

I'm not worried about their treatment of him; everyone is super kind. But no one cares for him the way I do. As his mother, I am 100 % fully invested in his well being. Plus, I know the ins and outs of his care like no one else in the world because I do it all the time. I can usually read his wants and needs and meet them without frustration. Maybe if Zane was a verbal child, I wouldn't be so on edge about leaving him with people I barely know. He can't tell me if he has a bad day or if something goes amiss. But tomorrow I'll do my best to let go. To send him out into the world without me, albeit for seven hours, because that's what parents do. But I'll think of him throughout the day, wonder how it's going. Because that's what parents do, too.

Home Again

Many of you may or may not have known that we went to Denver. Again. Just about every time we go, Zane winds up with an illness. Must be all those germs in the clinics or lingering in the places where we stay.

 

Zane and I arrived home last night. On the ride, he threw up twice. With his reflux issues, I didn’t think too much of it. But twice in the night—once at 10:00 pm or so, a second time at 2:00 am—he threw up again. Plus, he was running a low-grade fever. We kept him home from school today, and he is getting rehydrated and rested as we head into the weekend. He should be ready to return to school on Monday.  

 

In Denver, Zane has his post-op appointment with the eye surgeon. I knew the doctor’s reaction before even traveling to Denver: absolute disappointment. Whereas in July the surgeon was cheerful and talkative, this time he was straight-faced, disenchantment spelled out on his face. In essence, the surgery was for nothing. While there is no rush to have it redone this year, Zane’s surgeon wants to revisit the notion of reoperating within the next six months. So we’re potentially looking at a spring surgery. I plan to keep in touch with him by phone and email, leading up to our spring trip to Denver.

 

Zane also went to his cardiologist for a routine check of the heart. I was nervous going into this appointment. I think I am now programmed to be ready for bad news. Zane had an echocardiogram (which he loved) and an EKG. I was very relieved when the cardiologist told me everything is still stable. Zane won’t need to return for another two years. She will continue to watch that bicuspid aortic valve for narrowing and leakage.

 

We’re glad to be home. Zane was quite vocal during our stay this time around, which made it hard to read or get much writing done. As always, the people at the Ronald McDonald House were so welcoming and wonderful!