Ollie is now in Pre-op

The wonderful nurses and anesthesia team just took Ollie back for prep. He was grinning and working his binky for all he was worth. I think he already has a new fan club. Something about those big blue eyes and long eyelashes charm everyone he meets - especially the girls ;)

Thanks everyone for the wonderful emails and texts and phone calls over the last couple of days. The support we have received is fantastic.

We have beautiful friends and family!

Surgery has been scheduled...

I'm going to warn you now that this will likely be a bit of a rambling post. (Much like that last sentence...) It's been a long day. We were at Duke from 11:15am until around 2pm. I didn't sleep well last night. I'm tired. And I'm taking a pretty powerful antibiotic to knock out this residual crud in my lungs. Sorry.

So the pre-op appointment went well today. We came in armed with print outs and lots of questions (and statements, too, really). The anesthesia nurse practitioner met with us to go over any health issues as well as surgery and anesthesia issues. We gave her our print outs regarding special considerations for anesthesia with SMA babies and some SMA-specific pre-op and post-op nutrition guidelines. She also noted on Oliver's pre-op report several of our concerns regarding the "best" practices for extubation and the like. They should have a BiPAP machine and mask available for him to use following extubation.

And the date for his surgery is.....drumroll please....next Friday, March the 13th. (I've always like the rarity of Friday the 13th and how considered 13 my "lucky" number for some time now.) We won't know the actual time of the surgery until the night before when we call in to get it.

After the nurse practitioner, we met with a child life specialist. She went over every step of what to expect the day of the surgery: where to check-in, where the waiting room is located, who to ask if there are delays, where Oliver would go for anesthesia, what types of anesthesia might be used (gaseous vs. IV), where the operating room is located, who will be in the operating room during the surgery, where Oliver would go after the surgery. You name it, she covered it. Plus, she answered all of our questions: Can we stay with Oliver in the PICU? Where can we sleep? Is there somewhere to shower? What do we do about meals for us? How many visitors can Oliver have? Where will Oliver go after the PICU? She also physically showed us a G-tube and how it works. She told us suggestions that other families have made regarding this surgery and even what older kids who've had the procedure say about how it feels after the surgery.

I have to say I'm pretty at ease about this decision now. I feel as if we have thought about every possible angle - good, bad, ugly, indifferent. We've done a lot of research and spoken with several different families as well as medical professionals. Everyone at Duke seems to understand that we're the parents and, therefore, we're in charge.

There's one other thing that puts my mind (and stomach) a bit more at ease. Since Ollie is a special little boy with a special little condition, he'll get extra special attention. Cases like his don't happen very often so we'll have surgeons, anesthesiologists, doctors, residents, fellows and nurses observing his surgery. More eyes and ears to watch over him and look out for him in the operating room.

Neil and I have talked together about this before and we're glad that Ollie can help shape future doctors' minds and opinions about SMA.

That's all for now. It's time to get some rest. Please continue to keep us in your thoughts and prayers.

So, to Nissen or not to Nissen...

I finally found a good discussion on the Nissen fundoplication surgery - for children. Most of what I had read was relating to the surgery in adults.

So, we're dealing with several issues. The G-tube surgery has a relatively easy recovery as compared to the Nissen. The hospital stay would be much shorter. Less time in the hospital cuts our chances of getting an infection (staph, RSV, etc.). It also would be less time under anesthesia.

It would be ideal to do either or both surgeries while Oliver is still pretty healthy. Once his health declines or his breathing becomes more difficult, the whole anesthesia intubation/extubation monster rears its ugly head.

If we don't do the Nissen now, we pray that he doesn't have problems with reflux. Unfortunately, reflux is one of the major side effects of feeding via G-tube. Even if there have been no indications of reflux prior to the surgey. (Oliver's gastric emptying study only revealed one minor incidence of reflux just after starting the study. He has only spit-up 3 or 4 times - total - in his 6 months of life.)

If there is reflux, we could risk doing the Nissen surgery later or the tube into the stomach could be lengthened so that it empties into his intestines. Lengthening the tube means that his stomach would be bypassed and he would always feel hungry. Plus, if the tube goes into the intestines, you have to do continuous feeds. Bolus feeds are not an option. (Bolus feeds are feeds that are done 4 to 8 times a day for 15 to 30 minutes each time. This is more like a normal bottle-feeding schedule.)

As you can see, this is a complicated decision-making process.

We are leaning towards doing both the G-tube and the Nissen fundoplication. And doing it fairly soon. I would like to get all of his doctors together before the surgery to make sure that we are all in agreement on how to best handle Oliver's care. (I don't want to have to argue the pros or cons once we're in the hospital and have had the surgery.) I hope to do a little bit of educating with some of the info that I've found relating to these procedures in children with SMA. I'd love to get some of the standard of care guide information into his chart so that every doctor or nurse can easily reference it.

There is one other "fun" aspect of this process. One that we haven't really touched upon yet - the insurance company. I'm not looking forward to that battle.