Shhhhh. Asweep...

Mama and baby are both sleeping beautifully right now. It's good (great!) for both of them. Everything is still going superbly today. Ollie is doing great without morphine - what a little trooper - and seems to be tolerating the increasing quantities through his g-tube wonderfully.

As of now, it looks like we will be here at least through Tuesday. Tomorrow, they'll be showing us how to conduct a bolus feed (we hope not to need a pump for him, it would be a lot more convenient to feed as needed). He won't be able to take oral feedings until we have another swallow study done to make sure everything is working OK after the Nissen. That may happen before we leave the hospital or we may have to come back a couple of days later. You can tell the little fella wants to drink something, but now that the feeding volume through his tube is up, he doesn't seem to be acting as hungry anymore.

Once again, thanks everyone for the vibes and prayers you've been sending our way. And thanks to my parents for helping out so much over the weekend (Spring cleaning! That's just too much guys!).

Please also keep Rebekka's parents in your prayers. Her mom was supposed to visit to help with Ollie, but Bekka's father has had a bad time of it the last few days. I know they need the good vibes as much as we do. I know it's hard being so far away sometimes.

Until later...

Pre-Op Appointment

Well, we have a pre-op appointment on Tuesday at 11:15. I spoke with the pediatric surgeon's scheduling nurse, Marisol, on Friday. She was very nice and took a lot of time to answer my questions. And her answers were reassuring.

The surgeon usually does an open surgery for the Nissen. Marisol said that he often will try to start it laparoscopically but usually ends up doing the open procedure. Especially on a little fellow like Ollie, it's a bit easier to do the open surgery. Fortunately, the hospital stay with the open procedure is normally only 3 to 5 days. I know, I know..."only 3 to 5 days" isn't really a short period of time. But it is so much better than the 1 to 2 week estimate we had gotten from the pulmonologist.

I asked Marisol why a Nissen has become a standard procedure with a G-tube. She said to think of how it feels when you gulp down 20 ounces of water in just a few seconds. You feel really full and somewhat nauseous. When you get a bolus feed, it can feel much the same way. So the Nissen is done to make sure there is no reflux or vomiting that could be aspirated and cause aspiration pneumonia.

I've also chatted with a couple more moms of SMA babies. And they've all reiterated that the G-tube surgery was the best medical decision they made. (Again, a few said they wished that they had done it sooner.)

So, we're doing the pre-op on Tuesday and then we'll likely schedule the G-tube and Nissen surgery. I'm hoping to get all the doctors together - in person or via teleconference - to discuss the special issues related to anesthesia and surgery when a child has SMA.

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.