Saturday, March 14, 2009

The Next Stage of Bennett's Treatment

There's a part of me, and it's a big, giant, humongous part, that wants to be able to sign on to my Blogger Dashboard and sit down to write a blog that starts with 'Everything is fixed and Bennett is going to be just fine."

That's my dream anyway, and it will likely always remain a dream, because life isn't like that and his condition is not like that.

It's weird, I still don't know what to call it. Do I call it a disease? A condition? A disorder? Not entirely sure. When he has his seizures all strung together in a row, do I call it an episode? A group? A cluster? How do you figure out how to talk about your son who is in severe distress with a medical rarity? It's just one of those many little things that crosses your mind when you consider how everything in your life is just different.

Jen, Bennett and I went to Children's Hospital at around 10AM on Thursday to get everything set up to begin the next phase in trying to fix what ails him. Unfortunately, we found out around 12 that he would have to undergo another long term EEG. He hates getting hooked up to the leads, and who wouldn't, but to also keep them on for 14+ hours? Crap.

So he had that done, and then on Thursday night they gave him the first injection of the ACTH. Well, actually Jen gave him the injection while I held him down. She did great. For a woman that has been out of nursing with actual patients in a hospital for at least 5 years she handled the needle like a crack addict. He took the shot as he always does...with strength. The kid has that in spades.

2 more injections on Friday, and we came home from the hospital Friday night. It was super weird driving with $50,000.00 worth of medication in the trunk. Unreal is a better word than weird I think.

Now it's Saturday, another two injections today. He took them well, Jen delivers them great. His vital signs are OK, no spikes in blood pressure but definitely an increase. We have monitors here at the house to check him throughout the day. We check his urine for glucose, save a daily stool sample for analysis though I am not exactly sure what that one is for.

His appetite is high, as we expected, he is more agitated, more difficult to console. We expected that. He hasn't started to swell much like they say he might from the steroids. We're wondering when that will start.

And as for the seizures? No real changes.

We don't really know and neither do the doctors a time frame as to when we might see them stop. I mean, there are certainly protocols for how long he stays on the meds if they are working and how soon to take him off if they do not work for him, but we are talking about a window of a couple of weeks minimum as far as determining whether they might work for him.

It isn't like the movies, where the medicine goes in, the patient opens his or her eyes, blinks at everybody in the room and smiles and everyone breathes a sigh of relief. Like I said before, life just doesn't work like that. I just wish it did.

So we try to have some semblance of a normal life today. Jen's sister and her husband came by today for a visit, Bruce and his part of the family sent over an awesome set of balloons. My mom cooked some beef tips with noodles and my Step Dad installed a lamp outside that needed to get fixed. Jen took a walk with Carter and Bennett and Mandy, and I did some cleaning in the basement and some other stuff I had been meaning to do. Just an average group of people doing average Saturday things.

Except it wasn't average at all, and I don't really know how to explain what that feels like to anyone who has not tried to go through something similar to this.

And there is a range to that, sometimes it is as innocuous as watching your favorite TV show and a couple of times during the episode the feed is lost for about 10 seconds. But other times it's like trying to dance when you know one of the floor tiles has a bomb under it. There is no such thing as a totally comfortable moment. Probably never will be, but I'll get into that another time, the what if's and the what next's and all that, after I have a better bead on whether this medication is going to at least stop his seizures.

Monday I might actually try to put up some of the blogs I had already pre-written, I had about 3 weeks worth in the can (I like to get ahead of myself on junk like that). Might be good to try to focus on something else for a couple of days, though rest assured to anyone who is getting their info from this blog I will add something the MOMENT I have anything to report, either good or bad, about Bennett's journey.

As always, thanks for the support, the prayers, the well-wishes, the funny distractions. It's all very much appreciated and needed.

8 comments:

  1. As i am reading your blog I am in tears. i am so so sorry for what you are dealing with. ACTH treatments are pretty extreme. Ben Carson at Hopkins is the miracle man when it comes to pediatric brain/neuro-disorders. Always get more than one opinion as doctors are not always right. i'm sure you are doing everything you possibly can. i will pray for you and your family as you endure this struggle. Again i am so sorry.

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  2. Not sure who you are so can't thank you personally, but thanks for taking the time to respond.

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  3. Sorry, i did not tell you who on the response, not that i am looking for you to personally thank me. Just so you know who it was. i will put Bennett pon our prayer chain at our church too. He needs all the diviner intervention he can get right now. I did not sleep well last night thinking of Bennett and all of you. I will keep praying.

    Laura (Diamond) Watkins

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  4. I can't even imagine the hell you are going through. Nothing I can say, but we are praying for your whole family.

    -Steve Miller

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  5. I'm checking in with you just about every day. Diamond21050 is right when she mentioned Ben Carson, who belongs to the Seventh Day Adventist church, same as me. Although as famous and busy as he is, not sure how to get in touch with him, but if you need me to I can check through the church conference. But it seems for now as if you have a game plan and I'm praying for you and your family.

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  6. Thanks for this tough update post. Glad a treatment is underway. In reading what I can find on the I-net, I am hopeful for you all. I know this is the beginning of an uncertain and often dark valley. I will pray for you and your wife to hold tight to each other, just as you hold tight to your boys. Through medication and or surgery, I pray the four of you make it through together! God bless you guys! (And thank you for the note! You are generous to be giving such kind words when you are so taxed! Where is the old Kenneth who hit the floor at the birth of his first son...a distant memory huh! You courage is inspiring (to a daddy who inwardly freaks out over his daughters minor aches and pains.)
    Richard

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  7. I'm in tears reading this, Ken. I can relate a tiny bit to what you're going through - when my daughter was four months they thought she had bacterial meningitis and the two of us were airlifted to a hospital. But before my sense of unreality of the situation lifted, we found out it was viral and she wasn't in as much danger. So I can only imagine how you feel, and it's heartbreaking. I hope that your family and friends will be a source of strength to you and your wife. Of course if there's anything I can do please let me know, and I'll be thinking about you and Bennett.

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  8. Thanks everybody, appreciate the thoughts, sentiments and warm wishes.

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