The Next Step

Yesterday, we went to Riley's Children's Hospital and saw Dr. Ackerman from Goodman Campbell Brain and Spine. This was the appointment we have been waiting for during the last three months; once it finally came time to pack up and make the drive, I instantly felt nauseous.

The drive went well; Graden was happy as ever in the backseat with movies and Sprite. We played a few rounds of I-Spy and "Guess the Animal." We laughed as Grado would quote the movie he was watching or start a quick anecdote with "remember when we..." Those of you who know G know that means he's about to tell you something hilarious. :)

Upon arrival, we had to wait a bit to be seen, but we never complain. So many times I'm sure people had to wait because of us. And, as I became my usual anxious, fidgety self, I watched Graden with an increasing motherly-love. Isn't it odd how we are reminded of our love during the least opportune times?

Finally, we were called back to speak with our doctor. We knew this visit was to determine our next step based on concerns that have developed over the past eight months (from when we met Dr. Ackerman for the first time in August 2012), but more specifically since January. 

So, we went through the detailed results of the several tests Graden had during February and March, focusing specifically on the sleep study. We re-reviewed the MRI from our visit in January, and we began weighing our options. Gradually, I was becoming aware that she was leaning towards surgery as our next best option.

I think I went into Protector-Mode, with the help of some adrenaline, because I felt oddly numb to emotion and felt like I was researching options for what could have been anyone's son. Phil and I both asked questions, engaged in conversation, and agreed with our doctor, after a long appointment, that surgery was it. Brain surgery is our next step.

Will it fix him? Not necessarily.

Will the malformation go away? Not exactly.

Will it help? We hope so, but nothing is guaranteed.

So, why brain surgery? Well, because we at least have to try. Most concerning to the doctor are the issues involving breathing that are (most likely) caused by his Chiari Malformation. Additionally, Graden does have a diminished flow for cerebral fluid to and from his brain stem. At this point, because of their rapid development, we need to go through with the surgery as our best option to relieve some of the pressures and side effects in that area of his brain.

I realize this is a lot to read, to absorb, to understand, and to see... Graden does not "act" sick. In fact, he is "functional" - "normal" even... But, we see it. We know of his struggles. And, I promise you, they are there, and they are scary as hell. Watching your child have a seizure, stop breathing... even struggle to breathe is literally gut-wrenching. Heartbreaking. Frustrating. Sickening... I do not wish for any of you to see what we have seen with Graden.

What does the surgery entail? Well, this link: http://www.seattlechildrens.org/medical-conditions/chromosomal-genetic-conditions/chiari-malformation-treatment/ -- from Seattle Children's Hospital has the best description I could find of the surgery. Brace yourself. It isn't easy to read. (Here is another link that shows illustrations. It's more descriptive of adults, but the procedure itself is almost the same: http://www.mayfieldchiaricenter.com/chiari_surgery.php.

Obviously we have several concerns. But, we've looked in to this, we've reviewed our doctor and her abilities, we've researched, we've asked questions, we've debated, we've gotten more than one opinion... We know that it isn't a cure-all, a fix-it, or the end of his road, but we most certainly believe this is our best chance of helping him relieve some of these very serious health issues, primarily his breathing (central apnea) and flow of CSF (CerebroSpinal Fluid). Our hope is that this procedure drastically improves the issues caused by his Chiari.

Now, let me answer some of the most common questions we've been asked and respond to some of the most common responses:

1) This surgery has nothing to do with his other brain defect - the grey matter heterotopia, which causes the seizures and seizure activity. Dr. A did suggest, as did our Neurologist here in FW this past visit, that we may want to consult another Pediatric Neurologist at Riley that specializes in epileptic disorders and such issues as the seizure defect. We plan to do that soon.

2) We do not have a "percentage" of Graden's chances for success. It's based on each malformation, child, and other issues that may arise upon entering the brain. So, I suppose it's about 50/50. We do it and it works, or we do it and it doesn't work -- it can't hurt to try. Of course, there are risks involved with the surgery, but we, very carefully, weighed those risks to the risks Graden lives with daily without having tried the surgery, and again, we feel this is our best option.

So, surgery it is. We hope to have it scheduled in early June, as soon as Landen is out of school. We will be at Riley for the surgery, which lasts about 3 hours. Graden will be in recovery for about 5 days, as long as all goes well. During the 2nd week, Graden will be released, but he will still be recovering at home. After the first two weeks, and for the three months following surgery, activity for Graden will be limited.

As always, I will post details as I get them. I promise to continue to share our journey. So many people have reached out to me, us, Graden... It is beyond amazing. Your thoughts and prayers, more than ever, are so very appreciated. I try my best to think positive, but there are those days when worrying consumes me.

Today, though, I feel confident in our decision to pursue this procedure. I remind myself how far Graden has come and I find strength in witnessing his growth, his determination, and his care-free attitude towards doing what he needs to do to feel better. As usual, Grado teaches me how I should live life.

Thank you for reading this post today...

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!

The decision...

There comes a point in one's life...

Sounds like I'm starting a novel, doesn't it? Today, though, it is exactly how I need to start this blog post, because I (we) are most definitely at "that point" in our lives.

Let me begin by telling you how the past 24 hours have gone. Yesterday, Friday the 25th, we had our appointment at Riley's Children's Hospital in Indianapolis. We were going for an updated MRI and a "flow study," after which we would visit Graden's doctor for immediate results and "the next step."

We stayed with my sister and her family on Thursday night so we could wake up bright and early Friday morning. She lives in Noblesville, which is about 30 minutes away from Riley's. We had a great visit; I got to love on my newest, little nephew and play with my sweet niece. They are so fun! Graden loved playing before bedtime.

The day started out okay -- nice and easy. We arrived, registered, and got "prepped." The doctor doing the tests actually married a guy from Fort Wayne and went to Notre Dame; so, of course, Graden found her quite delightful.

After promising me she would take good care of Grado, it was time for him to be put asleep. I'm telling you -- it never gets easier. This was our third MRI; each time, immediately after receiving the anesthesia, his entire body goes limp. What was different about this one, though, was that he received a gas instead of a shot. He didn't mind it -- at first. Usually, the shot hits him before he realizes what's going on with his body. Yesterday, as the doctor warned him it might start to smell funny, he panicked and yelled, "Momma!" He reached out for me, and all I could do was half-hug him (he was covered and buried in tubes) and remind him, "Mommy's right here... You're okay..." All the while, I'm doing my best not to choke on my own tears.  I knew he was under when I actually felt his hug weaken, which about broke my heart. Again, the doctor promised she would take good care of him, and we had to leave the room... With him on the table, unaware of the test about to start.

I know he's tough. I know that he has great doctors. I know that it's all for a good reason. None of that makes it easier or better or any less of a "deal."

So, we waited... and waited. I brought homework to read; after reading a page and rereading it twice, I decided there was no way I was doing anything that would need my brain to concentrate. How could I? My son was on a table to check whether or not his spinal fluid had enough room to flow...

Eventually, a little later than we thought, the nurse came to get us, "Graden's parents?"

"YES! Right here!" as we hop up, we look at each other and share a quick glance that contains that moment of worry. In seconds, and without words, we wonder if he made it through okay. He has had trouble with anesthesia before, and, clearly, his medical history always poses challenges. As I type this now, I smile at the joy it brings me knowing that Phil and I can share thoughts without words. I'm so glad I don't have to go through this alone.

Turns out, Graden did great and was sitting up, waiting on us to join him in his recovery room. What a relief... I cannot even begin to explain.

After drinking some fluids and being watched, we're finally on our way to the other end of the hospital to visit the Neurosurgeon.

Again, I wait for it to get easier, but it doesn't. Waiting to hear the results about drove me crazy. Luckily, concentrating on Graden helps. And, again, we hear, "Graden's parents?"

Except, this time, a quiet "yes" barely escapes. As we go through the motions - height, weight, blood pressure - Graden smiles. He's tired, but he's pushing through. He is truly amazing.

We don't wait long. The doctor comes right in and jumps into the diagnosis. She's good like that... straight to the point, proactive, and positive -- all good attributes in a doctor if you ask me.

She goes on explaining and must have seen the questions in our eyes. So, she calls us to her office instead of the patient rooms. She pulls the tests up on her computer screen and walks us through it, explaining in detail what she saw and pointing out her concerns. She even calls the radiologist while we are in the room so we can hear her getting a second opinion - or a confirmation of hers. Either way, I liked it. No, I appreciated it. Apparently, the MRI didn't show much change. Then, we heard it:

"He has a slightly diminished path here."

Doesn't sound good to me, but she followed up quickly with it "not being the worse she's seen, but it isn't the best, either." Again, she sees the questions in our eyes; we go back to the patient room to sit down and discuss the next step.

You see, Graden's malformation has always measured "on the line." Because of this, we haven't had to do surgery. His current side effects have been minimal. However, with the recent changes in his health, we can't be certain they are all side effects from the malformation or from previous respiratory trauma. Since he is "on the fence," she doesn't want to jump to surgery... brain surgery! Again, she's straight to the point and proactive. We may be able to fix this side effect without surgery. (The side effects being his swallowing issues [have I mentioned these yet?], respiratory issues - coughing, pneumonia, etc.)

So, long story short (ha!), she is recommending swallow-therapy. Sounds interesting, and I'm really not sure what it entails. But, I'm on it. I've contacted a friend in the Speech Therapy/Pathology field that I trust very much, and she has agreed to help me get information.

The downfall? We have three months to see if we can correct or notice an improvement. We have a follow-up appointment April 5th at Riley's. At that point, if our follow-up swallow study doesn't show an improvement/change after therapy, surgery will, most likely, be the next step. And, despite my doctor's amazing track record and positivity, the surgery (BRAIN!) is not easy, nor does it cure all. There are still possibilities and side effects and risks and...!

So, you see, we're at that point when we had to make a decision. And, actually, we've made a few in the past 24 hours.

First, we're pursuing the speech/swallow therapy. I've got the ball rolling and will be working all week to get this started. We will put all our effort into doing what it takes to see if we can help Graden  before surgery.

Second, we're selling our house!

Sounds drastic and "all of a sudden" in this post, but, without going into too many details, the doctors' bills are piling up. We've been struggling for the past year, and this isn't the first day we've considered it. We've weighed our options, talked with our family members, and made the decision this morning. The realtor, another friend, is coming Wednesday to help us.

Yes, we have insurance. But, insurance doesn't cover what we need it to cover. Sure, it helps... but, as some of you know, medical expenses are expensive!

So, we will be moving "back home" with Phil's parents. They are amazing - those who know them know they are great, easy to live with, and certainly have the space for us. Thankfully, they are able to help us and know we are doing this for Graden.

Is it hard? Hell yes. Embarrassing that at 32 years old I'm moving to my in-laws? Yep. Do I know, though, that I have to make a decision that will allow me (us) to afford the best care for my child? Most definitely!

I'm sure many of you, especially those closest to us, are not surprised. Many of you have been there for us as we've struggled. Many of you have seen the piles of bills that come in the mail. Many of you know I don't make a ton of money -- and I couldn't have a "normal," higher paying job any way -- consider all the days I would have to take off! I'd get fired!

Regardless, this will be a challenge. Today, we cry. Tomorrow, we understand. A week from now, we may cry again. A year from now, though, we will know we did what we needed to do in order to help our family. And, Graden - our family - comes first.

I end with this...
A sincere thank you. I never stop being amazed by the prayers, thoughts, calls, messages, texts, emails -- all of it. I could never have imagined that so many people -- some close to me, some I don't even know, some I've known for years, others I  have just met -- would think of my son.

As I've said before, I know it could be worse, and I never forget that, but most days, I wouldn't change a thing. I have every single thing I need, and I'm reminded of that with every "Momma!" every message, every tough decision I have to make... So, yes, I'll miss our first home, but I know this is the "next step" for my family -- the right decision.

Thank you for helping remind me that my decisions are (typically) the right ones.