Graden's Surgery: Begin Countdown

I got the call confirming Grado's surgery.

He is scheduled for posterior fossa decompression for his Chiari Malformation on Monday, June 10th.

Let the two-month countdown begin...



*Click on the underlined words above for more information about the surgery and malformation.

Raising good boys...

My hope in sharing things about my boys, especially Graden, is to share his story, his challenges, his journey. I never want anyone to think I'm searching for compliments or pity; hopefully, you know me well enough by now...

In all honesty, I spend more time than I should deciding what to share and what not to share. I'm sure I'm not pleasing everyone, and I'm sorry if I upset you... never my intention; I always have good intentions. Always.

Trying to raise "good" boys is a challenge, whether your son is healthy or not. Shoot, trying to raise good kids is work... we all know that, whether you're a parent or not. I could go into the "back when I was a kid" lecture, but I'll spare you. We all know things have changed; influences begin at younger ages. Regardless, I'm a firm believer in communication. It's what my dad always did, and I think I turned out alright. (Please refrain from commenting on that.) :)

It's not a secret that I talk to my son. I talk to everyone. I'm like an open book... you know when I'm happy. You know when I'm sad. I can't help it. Because of this, I've always talked to Landen at a more "grown-up" level than I probably should. But, why lie? He can always tell when something is wrong.

"Mom, do I have to get a shot today?" -- a question I constantly hear from both boys as we go to their several doctor visits.

I've always been - and always will be - honest with the boys. A straight yes or no works fine. If I must say "I don't know," I follow it with an explanation.

I'm not telling you this to persuade you to change your ways if you answer that famous question with a "we'll see," knowing fully-well that you're going for vaccinations. :)

Instead, I tell you this because I'm trying to show you that this is what I've had to do for my boys. All they know is a life of going to visit doctors' offices; Graden more so than Landen, but still... They've needed me to be honest. They've needed to know what to expect.

And, Landen knows what to expect. Landen knows more than I even realize. Rather, he understands more...

This week, he hasn't been feeling well. He went to school Monday, stayed home Tuesday, and went back yesterday. As many of you know, I was in the hospital with Graden from 9 am Tuesday to 11:30 am Wednesday for his test. Needless to say, it's been a long few days...

When I picked Landen up from school yesterday, he was in bad shape -- burning up with a fever, as pale as his white t-shirt, and shivering with the shakes from his temperature. He said he was exhausted and fell asleep on the 4 minute drive home.

As you can imagine, I got him home, called the doctor and made an appointment for this morning, got him into comfy clothes, gave him some medicine, and wrapped him up on the couch for the night. When I sat down with him and asked him why he didn't tell his teacher so she could call me to come get him, do you know what he said?

"Mom, I was okay. I didn't want to bother you, because I  know you needed to be with Graden."

*sigh*

I couldn't even reply. Of course I would've made it work; I would have gotten him from school, but he tried to be tough for me. For his brother. For his dad, who had already missed a few days of work and was working out of town. What was I supposed to say to that?

I was mad (the worried-kind-of-mad) at him for a second. Then, I was heartbroken. My seven-year-old was putting the feelings of so many others ahead of his own. And, this wasn't the first time...

Raising good boys... Yep, there's some hard work in there, but mostly, I'm lucky. I'm lucky to have these two. They make raising them easy.

Today, after his doctor's appointment, we talked some more about this. I think he understands now that it's okay for him to need me, too. But, I won't be surprised if he puts his little brother's feelings first again down the road...

And, that little brother, well, he did great yesterday. He missed his brother and wanted him to come play. (Don't let me fool you -- they still wrestle and argue like brothers, but they definitely love each other in a strong way for being so young.) Landen got to visit Graden, though, and that made his day! (Well, that and all the snacks and nurses he flirted with...) :)

Now, as we wait for Graden's results from the Video-EEG, I sweat. I saw the monitor, and, as hard as I tried, I couldn't help but stare at it often throughout the day/night. Have I mentioned that this never gets easier?

Remember, Monday we started with the BiPAP machine (I said CPAP in my last post, but I was wrong.) The machine was scary the first night; I had to choke back tears as he asked me to stay in the room until he fell asleep. Last night, though, Grado was very proud to set it up himself and fall asleep without Phil or me.

He, too, is a good boy. He never complains about any of this... he does what he needs to do and never ceases to amaze me with his constant optimism and strength.

How did I get so lucky? So blessed? So loved...

--

Now, we lay low. We rest so Landen gets better, and we wait by the phone until the doctor calls with the results from the V-EEG. As always, I will keep you posted.

 

Today is one of those days...

While we've been on this journey, I've tried my best to stay positive, strong, supportive, and open. I'm realistic --  not too optimistic and not too pessimistic. I try to focus on making sure everyone else is okay, especially the boys.

 

There are days, though. There are days when I just feel like shit - to put it bluntly, honestly. There are days I want to just quit, pack up, and have it all disappear. There are days I'm selfish and ask why. There are days when I'm mad... then sad... then mad again. There are days when the "I know it could be worse" and "God doesn't give me more than I can handle" phrases don't cut it.

 

And, I'm not sorry to admit it...

 

Today is one of those days.

 

Today, I'm not "feeling it" -- It's been one call after another (yesterday and today), and I just don't want to do anything.

 

Friends, I'm sorry I've been MIA. Family, I'm sorry I'm grouchy. I hope you can forgive me and ignore me. I'll be fine tomorrow. Today, though, I'm done. I couldn't even get creative enough to blog, so I'm copying the email I sent to some of you earlier today.

 

Here it is:

 

Many of you know we were waiting for the results of the sleep study. We got a call from Graden’s Pulmonologist early this afternoon with the results. It wasn’t good; in fact, they said it was worse than they anticipated. Graden had several “episodes” throughout the night - they even saw other abnormalities than what they were looking for.

 

We are waiting for a call for a CPAP machine (continuous positive airway pressure);  it has a mask that he will have to wear every night while he sleeps due to the lapses in his breathing. The machine will help regulate his breathing and control the pressure in his breaths. (For more information on Central Sleep Apnea, click here.)

 

She did say this would be something he would have to deal with forever.

 

It could be a side effect from his malformation, but it is more likely that he has developed this because of all his respiratory issues/trauma.

 

After therapy, I called his doctor at Riley. The Neurosurgeon said she wants to keep our appointment April 5th to allow time for the remaining test results. Then, she can decide if surgery will help these side effects; however, she may be leaning away from surgery until we can get more information -- these issues may really be because of his respiratory trauma, in which case, surgery won’t be beneficial. At this point, the risks may outweigh the results...

 

More side effects from his Chiari Malformation are appearing and seem to be strengthening as his brain grows. We knew this would be the case, but it is proving to be more challenging than we expected.

 

Additionally, his swallow therapy has been extended through September; today, they told us they heard some improvements. One small step, but we will take it.

 

On another note, Graden will be having a 24-hour EEG next Tuesday at Lutheran; Graden’s Neurologist is concerned about the increase in seizure activity in his brain. We have seen this increase during other tests, but we will be able to specifically focus on this during the EEG. At this point, this is a serious concern... seizures and breathing concerns are a bad combination, especially considering the growth and changes Graden has experienced.

 

We know this can be difficult to read and imagine. Graden is our ornery, athletic comedian and we joke that you cannot tell he’s “sick,” but please know that just because you don’t see it doesn’t mean it isn’t there. I am thankful that I have always been the one to see these issues (seizures, etc.), but now, Phil and others are experiencing it as well. I certainly hope you don’t have to witness his “moments” and appreciate that you all continuously think of, pray for, and send love to our little man. As we continue this path, as scared as we are for Graden, he is still “living normally” and is happy as can be! Our wish is that through this all he is able to be happy, even if it means he won’t be “living normally.”

 

Love you.

 

Days go by...

It's true: Time flies. (I haven't decided about the "when you're having fun part" yet, though.)

Can you believe we began this journey two years ago? Graden had his last full seizure in March -- two years ago! During that time, we have gradually found out what caused many of his traumas from birth to 3 years old. During 2012 alone, we have had more visits and tests than we have in the past 5 years of his entire life. 

A week has passed, and we continue our therapy. At our "check-in" on Tuesday, we were told he was doing great with his exercises at home. While he worked/played with the therapist, she reminded him about little techniques until he was doing them on his own. It's bittersweet watching him do so well, be so grown up...

When we got home from therapy Tuesday, I received a phone call from our Pulmonologist asking if I could come in Wednesday (the next day!) at 11:20 for an appointment. I wasn't sure what to expect, because the nurse didn't give me any information. Needless to say, Phil and I both went, unsure of what to expect.

After a painful 24-hour wait, we arrived at the appointment, which lasted longer than many of our other visits. The Doc reviewed Graden's last month or so of files, test results, and current condition and informed us that he wanted to touch base and pursue the next steps now instead of waiting until after therapy (remember, our doctor at Riley is giving us until April 5th to see if we can see an improvement).

So, next Thursday we are doing that "sleep study" I mentioned in my last post. Graden and I will be spending the night at Lutheran so they can watch him overnight. Our doctor will be the one doing the test, and he will be looking for a "Central Apnea," which is defined as: when the part of the brain that controls breathing doesn't properly maintain the breathing process (cited here).

The doctor continued to inform us that because of Graden's minimal (but difficult) side effects from the Chiari, we need to determine if there are other concerns being caused by the malformation; one such issue would be the central apnea, which, combined with the aspiration, would be two major side effects and be grounds for surgery. If we do not notice any apnea - or slight - we may be able to report back in April at Riley that our therapy is working and no other issues have been produced (at this point) from the Chiari.

Obviously, we're are hoping for little-to-no apnea! As if I don't already worry, especially about the seizure activity he experiences, the thought of Graden not breathing while sleeping is horrifying.

The doctor also suggested we do a test with an ENT on Graden's vocal chords (which I'm pretty sure just fine -- the kid is LOUD) to be sure there is no pressure there like we've seen in his laryngeal muscles (swallowing). 

Before we left, he calmly told us that this was not going away; even if we did the surgery, he wanted us to understand that the malformation would be there. And, worse yet, the surgery isn't a "cure all." We already knew, but that doesn't take the hurt away when we hear those words.

So, we're still at it... one day at a time, and that time is flying -- thankfully!

A new (bumpy) path...

I will move past telling you how last week was challenging (read my last blog post) and tell you how interesting it was instead.

For starters, the kitchen sink broke. I don't mean broke as in water was spraying everywhere. I mean broke as in the water wouldn't go down the drain. It was interesting to say the least. After a few days of Grado and me doing dishes in my bathtub (can you picture that?), the hubby and his buddy finally managed to unclog some fifty feet of pipes.

While the sink was clogged, the washing machine, which has been trying to break for months now, officially sprung a leak. It works, but the loads have to be smaller and I have to check it after each use. It's painfully annoying, but I think we will live. We will be buying a new washer in the next few weeks... oh, the joys of adulthood.

Also, last week, while the washer and sink were having water issues, my laptop -- while I was attempting to grade portfolios -- decided to have a problem with some "driver." Again, incredibly annoying and frustrating, but it has been a faithful machine, and I won't complain about getting a new one (besides the cost!).

In addition to all of this, Landen was home with pneumonia from Tuesday-Friday last week. We visited the doctor three times -- just for him.

Graden, who had a swallow study done last Thursday, was in pretty good spirits and managed to stay healthy through Landen's illness -- a miracle indeed.

Yesterday, however, we took a turn down a new path...

While still recovering from the heavy hearts (again, see my last post), we were anxiously awaiting the official results of Graden's test. Originally, we thought it would be a test that we didn't have to worry about. We thought the doctor was being proactive and ruling things out, which was not the case.

During the tests, the therapists and nurses began telling me about what they saw, none of which was good. One even went as far as saying, "If you don't hear from your doctor today, you need to call." Lovely. They were helpful, though, and explained that Graden was, quite possibly, aspirating.

At the time, I wasn't sure what questions to ask. I didn't know how serious it was, and I surely didn't know what it all meant. So, I waited. I cried, and I waited.

Luckily, if I can even say that, I needed to focus on getting Landen better through the weekend and pushed my questions aside (right after I googled it). :)

On Monday, I kept busy and enjoyed every bit of the first day of my break.

Yesterday, my day started out great. I had a meeting and a long catch-up session with my boss, who is becoming a dear friend and mentor. I had a lunch-and-library date with Grado. Then, we went to his six-month check-up with his Neurologist.

I'm not sure what I expected. Honestly, I'm not sure I ever expect anything, but I sure didn't expect the words that came out of her mouth: "I think we need to touch base with Dr. Ackerman."

Do you remember who that is? She is Graden's Pediatric Neurosurgeon at Riley Children's Hospital. While I liked her very much, I'm not sure I wanted to see her again so soon... We were just there in August.

Regardless, our Neurologist here thought it was best to notify her of the changes (health-wise and a few other concerns that I won't go into here) Grado has been going through and the results of the test, no matter what they were (we didn't know them at this point).

No sooner than we walked out of the building, my phone rang. It was the Pulmonologist's Head Nurse called to let me know the results of the test from last Thursday.

Thus, our new path...

Graden has some issues with fluids. I could type out all the medical terms, but it is slightly confusing. I plan to do more research and post more. In the meantime, we have to be careful because of the possibility of aspiration. so, long story short, we have to thicken his liquids with hopes of fixing or improving the issue. In turn, addressing this issue should help improve other concerns.

After a 30 minute conversation, a promise to mail me more information, and a follow-up appointment scheduled, she said the same words I had already heard once... "Doc wants you to contact your specialist at Riley to run these results and changes past her."

So, I did. I made the call. I can't believe that dialing numbers could pose such a challenge. It was painful, scary, and frustrating all at the same time. It's hard to explain and sounds silly to type.

Another 30 minute conversation later, I had more information, some answers, an idea of what would happen next, and another test and appointment scheduled with our doc in Indy in February.

So, I'm not entirely sure where this path will lead us, but, as always, I will keep you posted.