Operations Management

We've just returned from our day of baby doctor appointments and it looks like 2013 will be the year of the operations for little Torsten. Our first appointment of the day was with his pediatric ophthalmologist. For those of you that haven't yet met Torsten, his eyes can sometimes run a little wild. They don't necessarily cross, but they both seem to have a mind of their own. According to the doctor, we should give him a couple more months to let his eye muscles develop, then re-measure them. In the end though, he doesn't have hope that the problem will fix itself and that we'll have to fix them surgically. It looks like this will happen sometime this spring.

Our next appointment was with the pediatric neurosurgeon. Since we already knew going into this appointment that surgery would be necessary, there were no surprises. The good news is that according to the doctor, "this surgery is huge for the parents, but small for the surgeon". I can't say that this makes me feel much better about my son having surgery on his spine, but I'm at least thankful that it's not the most complicated thing on her schedule.

We asked quite a few questions, so I'll try to list a general Q&A below.

Q: How common or rare is this condition?
A: She performs ~20-25 of these operations per year (her office holds the only pediatric neurosurgeon practice in Dallas).

Q: Risk/chance of re-tethering?
A: She believes that she can completely solve this issue and that the chance of re-tethering will be ~1%, which is amazing.

Q: What is the link to Spina Bifida? Does Torsten have Spina Bifida?
A: The two (tethering and SB) are often linked, but Torsten does NOT have SB.

Q: Are Torsten's chunky feet related to this issue?
A: (quote) "Wow, those are some chunky feet, but no, probably not related." :)

Q: Is this condition genetic?
A: It could be. There is not enough evidence to say yes or no definitively.

Q: What is the surgery like?
A: The surgery itself should take 1-1.5 hours. Anesthesia before and after, adding another 45 minutes or so on each end. He'll need to spend at least 1 day and night flat on his back in the hospital and can go home once he seems fine, is himself and is eating normally again. Parents can stay with him and mom can sleep with him and cuddle him. :)

Q: Anything we need to do beforehand?
A: We have to see a urologist to check if any damage is already present and to have a base for comparison afterward. One of the most common problems associated with this problem is bladder issues. She said that we may not be able to toilet train him, but we'll deal with that when he's 3 years old if the problem presents itself.

Q: When should we have the operation?
A: As soon as we're ready in the next few months. It is planned that we will probably schedule it for February.

If you have any other questions about Torsten, sacral dimples, tethered spinal cords, etc., please don't hesitate to ask. We're educating ourselves along the way and are becoming better versed on the issues everyday.

Ryan and I are doing really well after the appointments today. Even though Google can be the enemy when it comes to researching your child's medical conditions, we were both glad to go into the appointment armed with some general information. Being prepared to hear that our child would need surgery on his spine saved plenty of unnecessary tears from being shed today and we were actually relieved to hear that it is not any worse than we thought it would be. I hate that our son has to go through all of this, but we're extremely fortunate that it's manageable and that we live in a time and a place that allows for such treatment.

Thank you all again for your sweet emails, texts and calls. It's been a long week, but things are really not so bad. Mister T will get through this and hopefully won't remember a thing about it. And we'll do our best to forget the bad parts and just be happy that we have him in our lives and that, in general, he's a healthy, growing baby boy.