Delay

My apologizes for the delay in posting however I have been under the weather for over two weeks now. I am still not feeling very well and I now have an ear infection. I have been doing my best to take care of Dear Son, work and get some sleep when I can and not much else.

Dear Son just completed his Spring Break which meant over a week of 24/7 caregiving which can be a lot. I was fortunate to have his Dad split up the time with me, taking the first four days so I only had the last five days to care for him. It is a lot of work now that he is physically much larger and even more challenging when I am not feeling very well. Thankfully, Dear Son is not getting sick so that helps a bit even though his seizures have been increasing.

I suspect I will not have another post for at least a week until I can get to feeling a little better. It's hard to be creative until my head clears a bit. Thank you for being so patient.

Follow Up

As a follow up to the last post on Dear Son’s choking, I e-mailed the ENT. She is the one who performed Dear Son’s botox injections on January 22, 2008. She called me this morning however unfortunately, there aren’t any other meds to try and most likely the next step will be removal of his saliva glands and a Nissen. If that doesn’t work, a trach may be necessary however I hope that is not the case. We see her in clinic next month.

On a different note, one of the students from Big Academic Medical Center contacted me a few weeks back about conducting an interview for the college newspaper. She is a senior and has been reading the blog for over a year now. She states that she guessed it was the Big Academic Medical Center she attended based on the clues in the blog. She was doing a story on the Air Transport Team and since we have used there services several times over the last few years, she was interested in interviewing me. The story was supposed to print a week or so ago and she was going to send me a copy however I haven’t received it yet.

On another publishing note, my blog was published in a Big City newspaper. As you may recall, I was invited into the Blogburst Network in November of 2006. BlogBurst is the world’s largest blog syndication network.* Once you sign a contract, any of their publishers can view your blog and print your content. Recently, a Big City Newspaper published my blog in their on-line edition. You can see about it here. Ironically, it was the same post that I submitted to Newsweek’s “Your Turn” a few weeks ago.

But most of all, I’d like to thank you. It is your support that is always a pleasure to us. The comments are always so beautiful.

*Note: Pluck Corporation operates BlogBurst, and distributes the content to media sites and newspapers around the world. In 2006, Reuters formed a strategic alliance with Pluck Corporation, to syndicate third party blog content as part of Reuters news and information service. Under the terms of this agreement, Reuters will offer BlogBurst’s syndication service to thousands of its media customers worldwide including The Washington Post and the Gannett newspaper chains, among others.

Dear O'Son

Happy St. Patrick's Day!

Dear O'Son is all ready for the holiday today. It took a while but I managed to get a smile out of him. Yay!

The last few days have been quite challenging. Dear Son started having more seizures lately and when I couldn't get them under control, I called the pediatric neurologist. The medicine change helped the seizures however his choking increased significantly at night (one of the side effects of the meds is increased drooling) due to the increase in saliva. This is compounded by the fact that he is not able to clear his airway very well. He's fairly weak and has great difficulty coughing to clear the airway; at best, he'll simply yell out to clear it. I have elevated his hospital bed as high as it will go however it still isn't enough to help much with the choking. As a result, he is choking most of the night on his saliva.

The botox injections we had on January 22nd peaked around the three week mark and were less effective as time went on. He was scheduled for a second injection on May 6th however it is clear he will not be able to make it until then. I had scheduled another appointment in April with the ENT to discuss possible next steps-removal of the saliva glands and a Nissen (he did not have the Nissen when his g-tube was installed in 2004). I suspect that is where he is headed based on the failure of the botox.

In the interim, I'll speak with the ENT today to see if perhaps there is another drying agent or medication that he could use to assist in the reduction of saliva.

Winning Ugly

I’ll admit Dear Son’s inability to process his food a few weeks back threw me for a loop. I know it shouldn’t, I mean, it’s not like he’s been eating or anything. It was just the realization of another milestone in his downward spiral was achieved, if you call it that. Kind of like walking downhill and then slipping on the ice and nearly falling. You get hurt trying to stop the fall and then you realize what could have happened.

It’s a little more fun on the other end, when they are doing things to get “to” a milestone. Like maybe standing for the first time, even in a stander, now that’s moving forward. But the whole tasting thing, and not being able to eat, was just a reminder that there were ugly days ahead.

I remember lying him down that night to hook up his feeding tube. The cat walked by and I thought of how odd it would be if the cat were hooked up to a feeding tube or had a g-tube. It would be weird and we just wouldn’t do it for a cat. But somehow, it seems like a pretty good idea for our kids. After all, it’s a stop gap method for them. I remember we did it because Dear Son was having difficulty taking his seizure meds. They were mixed with food and he had so many of them that it altered the taste of the food and he no longer wanted to eat the food. Once that happened, he’d have more seizures and eventually he needed to get the g-tube, which solved that issue. It wasn’t until the MRSA pneumonia that he went to g tube feeds.

This whole deterioration piece is not fun. The botox injections, that were to assist with the choking at night, peaked at around the three week mark. For the first three weeks, it was great. Dear Son slept well since he was no longer choking through the night. It never seemed to impact his drooling though. After the three week mark, things went downhill. There are some nights that he has a pretty tough time. He’ll yell out the entire night and be exhausted by morning. It’s not every night but it happens enough. I am back to elevating the bed every night again. True, there were benefits to the botox injections, such as he’s not choking as severely as he did before, and for that, I am thankful.

But I ask myself, after the whole tasting incident and the realization that he’ll never, ever eat again, what’s next. His paternal Grandmother says to me from time to time, “that there is nothing to look forward to.” She would go on and on saying how Dear Son has nothing to look forward to and then sometimes that we, his Dad and I, had nothing to look forward to. For the most part, I just listened and it never really bothered me because I was so excited just to have Dear Son around for another day. I know that might sound silly but I am so thankful that I get to spend all of these days with him and I know that’s a blessing. I am glad I got to see him mature into a man; I am happy that I saw him grow up. I absolutely love seeing him smile. It really makes my day. But his inability to do anything more than taste his food changed all that. I knew then that we were headed backward. There was no more going forward. Ever. And that’s when I realized that there wasn’t much more than ugly days ahead.

It’s getting a little harder for him to get through his day. I work hard in the morning to get him ready for school and to get him to smile. I try to do and say things to make him laugh. More often than not, I might be lucky to get a smile out of him. He seems exhausted. After school, is worse, in some respects. He gets off the bus and looks like he’s been beaten to a pulp in his wheelchair. There are no smiles, his head is down and he sometimes has slept on the bus. He does perk up once he’s inside, and he’s happy to sit in a rocker for thirty to forty five minutes, but most of the time, he sits in his rocker listening to his music with his head on the table. After that, I take him in to his bedroom and he falls asleep the minute he hits the mattress, like within a minute. He nap until dinner time and when he wakes up, I’ll start dinner, which is Pedia Sure in his bag. And that’s it. He sleeps until morning, yelling out for diaper changes, choking, seizures or simply for me to roll him over.

I don’t know what more I can do for him. I just wish it were different for him. I mean, what’s next? What happens when he’s hospitalized for pneumonia, or something like that. What will I do? When is it enough? When do you stop? How do you stop? I just know I don’t want to be there. I don’t want to have to make any decisions. I want it to be natural. I don’t want to be put in any positions where I have to make any decisions. It’s just too hard. Because if I save him, I have nothing. He’s too tired and it’s physically exhausting to get through his day. I can see that. But if I lose him, I have nothing. What will I do? And how will I ever reconcile the fact that I made that choice? I can not do that either. Ever.

In football, when they fight hard to win, they call it, “winning ugly.” But in this case, I’d just call it “ugly.” Just plain, ugly.