Surgery Is a Go

Zane’s surgery is set for Tuesday, September 30^th. We met with the surgeon on Thursday of this past week, and he said that approval or not, denial or not, they are going ahead with the surgery. The hospital has their financial avenues covered regardless of what happens with the insurance company.

They have blocked out six hours for Zane. However, the surgeon believes the surgery itself (him performing the actual operation) may be less than four hours. A lot of the time is spent on anesthesia, hooking up the neurological monitoring, putting an IV in place or—if needed—a central line, plus any other preparations needed to make sure Zane is as safe as possible when he goes under. They will have blood on hand in the event there is significant loss.

I reviewed the various complications with the surgeon that can arise. Despite all of that, a parent can never feel fully prepared for what might happen. We certainly know this from Zane’s birth experience in 2006.

On Friday, Zane had his blood drawn, and Jeff met with an anesthesiologist. The only thing that will derail the surgery now is if Zane winds up with an infection between now and Tuesday. It’s happened before, back in 2011, so we’re not ruling anything out.  

Aside from Zane’s two very lengthy appointments this week, I also wound up taking care of my own labs (which were ordered back in June). There were a few not-so-happy results that I can’t focus on right now. Plus, Jeff wound up taking Justin to his pediatrician for an episode of contact dermatitis. There is a chain of knots running from my spine, into my neck, all the way into my head. No amount of medication or massage is helping.

I am very nervous and cannot help but run various scenarios through my head—some of which I absolutely do not wish to imagine. It is a major surgery. Zane’s other surgeries (while always possessing some degree of risk) were pretty routine compared with his one. My only worry with the other three was anesthesia and pain management. This one is a whole different beast altogether.

I will stay with Zane in the PICU the entire time he is there. I made the mistake of leaving him for a few hours back in 2007, and things went terribly wrong when I was gone. I don’t know how easy it will be to update his blog. But I will try.

Two Weeks Until Surgery...Or Not

To say that the weeks leading up to Zane’s surgery are challenging would be an understatement. I am definitely feeling the stress of it all. And I have promised myself that when the surgery is over and Zane is on the road to recovery, I am going to start running. I need a healthy way to cope with everything. I even downloaded a running app to my phone in preparation for it all.

As of this morning, we still do not have approval for the MAGEC rods. This is a problem. If the rods are denied, we have to embark on the journey of appeals, which will most definitely delay surgery. This, in turn, affects not only Zane and his well-being, but my job. The school I work for is in the process of finding a substitute to cover me during my requested leave time. So I kind of need to know now whether the rods are approved or denied. The surgery scheduler is looking into it.

Over the past couple of weeks, I have contacted nursing agencies in order to find post-op help with Zane. After researching and finding the ones with the best reviews, I contacted three different agencies. Not a single one has gotten back to me regarding my request. So it looks like I’ll be taking care of Zane on my own during the day, which is a little nerve-wracking. Bathing him and transitioning him without help will be interesting, to say the least.

Then—as if all that’s not enough—over the last couple of weeks, Zane has been removing his right hearing aid and poking at his ear. I took him to Urgent Care where they told me that it’s likely allergy-related. I increased his allergy meds. But the poking hasn’t gone away. So last week, Jeff took him to the pediatrician. Apparently, Zane has a retracted ear drum (which can happen with allergies). But if it doesn’t clear up in the next week or so, then Zane has to see an ENT for possible ETD (Eustachian Tube Disorder).  My thought is that it has to be related to allergies since he’s never had ear problems before. I left a message for Zane’s allergist this morning to find out if we’re overlooking something or if we need to change Zane’s meds. (Zane’s allergist is awesome, by the way). Unfortunately at the pediatric appointment, Zane was also tested for a UTI. The initial test was suspicious, so he is now being treated with antibiotics.

So that’s where we are right now: dwelling in the Realm of Uncertainty. If anyone tries to sell you a time share to this place, opt for the beach vacation instead J

Surgery Update

Zane’s surgery is scheduled for the end of this month, and to say I’m nervous would be an understatement. Already, there have been nights where I’ve snapped awake by the thought of it—too anxious to go back to sleep.

Zane’s been through surgery three other times. But the memory of the first surgery will be with me forever—the fact that he almost died back in 2007. And maybe that’s where the fear comes from. Maybe it comes from the fact that things seem slightly less predictable with Zane and his medical history and involvement. Yes, he’s a trooper. But he’s also human.

What am I afraid of?

1.  He won’t make it through the surgery (something will go wrong).
2.  He’ll be in A LOT of pain after the surgery. No loving parent wants to see his or her child go through that. He’ll need narcotics, but they were (at one time) his evil nemesis, sending him to the PICU back in 2007.
3. There will be complications after the surgery, such as infection, wound problems…who knows?
4. The whole thing is out of my hands. I have absolutely no control over what happens with him when he’s with the surgical team. I’ll regain some control once he’s in recovery because I can be his voice and his advocate there.

Zane now has clearance for surgery from both his allergist and his cardiologist. Zane’s allergist used to manage one of the floors of an area children’s hospital, and he highly recommends that I push to have Zane immediately placed into ICU rather than on the floor. He said the level of skill and care in the PICU is superior to that on the floor. And, in Zane’s case (where he has extenuating medical needs), it is not unrealistic to ask for this level of care.

The red tape surrounding the surgery is a whole other story. I feel like a circus dog jumping through hoops to simply get a leave of absence from my job. Plus, I am still waiting to hear whether Zane’s insurance company has even approved the MAGEC rods his surgeon wants to use. The nursing staff at the ortho office manages to dodge this question through every exchange of voicemails we have. We never seem to connect on the phone.

Zane’s pre-op and lab appointments are both set for the week prior to surgery. I am trying to get nursing care at home for post-op help. But like so many other customer service slights of late, no one will return my calls or messages.

But through it all, my main hope is that Zane’s surgery and post-op situation will improve his life and make him even happier than he is now.