An Update from the Homefront

Soooooo....let's see here. I suppose I should update you all on life around these parts. =)

It dawns on me as I review the posts since our last ER trip that Neil and I never told you Oliver's "official" diagnosis: pneumonia possibly due to aspiration (of his own slobber, I guess). Ollie never had a fever per se but we had been dosing him regularly with Tylenol and Motrin to help with his teething. (All four top teeth are trying to break through and have been for a couple weeks. Any minute now I expect to see a chomper on that upper gum.) He just finished his last dose of Augmentin last night. His secretions seem to be back to baseline (i.e., Ollie's version of normal). And he's also back to being his smiley, happy, talkative little self! With SMA, you consider yourself lucky to make it to 11.5 months old before getting your first pneumonia.

My cast came off on Friday 7/24. I may return to light-duty "work" with the restrictions that I should not lift or carry more than 10 pounds (Ollie's over 19 pounds now). I also should not do any repetitive twisting or turning with either hand. Makes for a challenging day, don't ya think? At least I can open my own soda cans again...hooray for small victories! I will be going back for yet another set of x-rays on 8/14. So far, it doesn't look like any surgery is going to be needed.

Due to my injuries, we got a temporary increase in nursing hours through CAP/C. They call them short-term intensive hours; I call them a godsend! We had been getting between 12 and 20 hours per week. Since my fall, we've been getting up to 16 hours a day which usually works out to 10am to 6pm (while Neil is at work) and then 11pm to 7am (overnight - so that everyone can get some rest). With Oliver's pneumonia, this was very helpful since he was getting albuterol treatments, CPT (chest physiotherapy), CoughAssist and suctioning about every four to six hours - including overnight.

Sadly, Grandma headed home yesterday (7/28). We had a great visit. She was a big help getting Oliver's room better organized, keeping the garden watered and harvested, mending clothes, and changing yucky, stinky diapers! Grandma also constructed a puppet show stage (out of a cardboard box) which Ollie and Mama helped to decorate with crayons. Ollie thoroughly enjoyed his Grandma's puppet shows.

I think that is all for now...I better scoot! Have a great day and thank you so much for keeping up with us.

Disappointment

Oliver had his swallow study done at 3pm. He got about 4 bites of applesauce mixed with barium (so we could watch on the videofluoroscope). The speech therapist stopped the feeding and began to massage his cheeks and throat. And then she stopped the study all together.

SMA causes muscles to weaken over time. Muscles like those used to swallow. Oliver would try to swallow the applesauce, but a lot of "residue" would remain at the back of his throat. When he would inhale a breath, the residue would be sucked into his windpipe and hit the top of his vocal cords. Any residue that enters the windpipe is considered aspirated and, if it enters the lungs, can cause pneumonia.

The recommendation from the speech therapist was to discontinue oral feeds. She was very sympathetic and told me how much she hated having to tell me that news. We watched the recorded video together and she showed me where the food had penetrated the windpipe as well as where food had entered Oliver's nasal passages. I asked her if she thought this was due to the Nissen or the post-op or SMA. She didn't even hesitate. It's the SMA progressing.

That was the first real blow since we've been in the hospital. Everything had been progressing nicely. And our goal had always been to continue oral feeds after the g-tube surgery. Especially since Ollie loves sweet potatoes and blueberry applesauce! Instead, SMA has stripped away another layer of normalcy.

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.