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!

The Therapy Begins.

Before I update you on Graden's newest task, I want to give a "shout out" to the people at Lutheran Hospital Outpatient Rehab. Two of the ladies that work as Speech Pathologists (maybe therapists - I always get them flip-flopped) gave Graden his Swallow Study test a month or so ago, and (I said it then, but I'll say it again) they were amazing. I've never had someone (in all our test-taking) explain to me so efficiently what they were doing while they were doing it. They were honest, friendly, and wonderful at their jobs.

None of those qualities changed when we visited yet a 3rd lady, who was recommended by our friend M (who also works with these ladies but is on maternity leave) and who is now Graden's Speech Therapist (or maybe Pathologist is her title... goodness, I need to find out). Instantly, she was addressing me but engaging Graden. She made sure both of us understood and felt comfortable with our new therapy procedures.

Can I just say right now that one of the best qualities of any medical personnel is to be confident in their work? Not the overly confident that borders arrogance... No, the confidence that would tell you they know what they're doing and if it doesn't work, they'll try something new or find someone who can help. Yep, that confidence works best for me. I'm sure if you skim previous blog posts, you will see that I've said it before.

So, our therapist taught Graden 4 exercises that he will now do 3-4 times a day, every day. We will check in with her each week to make sure he's doing them and that he doesn't become hoarse. It sounds like a lot, and, at first, I was worried. But, he's already started today and knows that if he does them right and they work, he won't have to use his "medicine" in his liquids anymore. :)

Originally, I thought we would be driving out to Lutheran several times a week, so I am quite thankful that we can do this on our own. I just hope Graden continues to be a good patient for his Mom. (We all know he can be quite the stinker!)

The therapist didn't seem positive or negative, which worried me at first, but now I realize I'm thankful. She was straight to the point -- we have to do this, and we have to do it right. Apparently (as my medical education continues), there are very few "tricks" to strengthening the muscles Graden needs help with, so it's more about frequency than duration. Meaning -- we do them a 3-4 times a day for a few minutes instead of once a day for 20 minutes. My theory? Whatever the heck works!

We go back next Tuesday to check in; please keep him in your thoughts. We have a few months, when we do a new Swallow Study, before we'll know if we're in the clear.

Additionally, his Neurologist wants to follow up with a Sleep Study to check his other brain concerns to see if they're changing/being affected while he sleeps. Did I mention his last test showed a bit more "seizure activity"? However, they want us to get through therapy first so nothing throws the test off. Fine by me -- one thing at a time.

Either way, Grado was a trooper yesterday and did everything she asked. Let's hope this little guy can keep it up!

--

In other news, we are all moved in to the in-laws' basement. We are comfortable and the boys are adjusting quickly. We have a few random things in the attic and closets at the old house, but we'll get them when it's warmer. Moving in the snow is ridiculous. :)

Hey, do you know anyone who wants to buy a 3-bedroom ranch? :)

Sharing in the Spotlight!

Before I begin my usual update, I felt the need to shine the spotlight on Landen a bit.

Landen is amazing; there are many ways I could describe him, but amazing covers it all.

While he is your typical 7 year old in that he loves to play (especially outside), he tries to avoid veggies as much as possible, and he likes to stay up late and sleep in if I let him, there are also many things that aren't so typical.

Landen is smart.
I know you're thinking that all moms think their child is smart, but he is smart in several ways. Sure, he gets good grades and is always on the honor roll list, but his brain also works in ways that are beyond his seven years. He asks questions about everything -- not in an annoying way. :) Instead, he really, truly wants to know how things work, what words mean, and why things happen. Very inquisitive! Shoot, he's even been watching the DIY Network for fun! :) I love watching him as he learns new things; his teacher says his reading skills are excellent (just like his Momma!).

Landen is sensitive.
Again, I know what you're thinking. He probably fits the stereotype of "momma's boy," and I don't care. In fact, I love it! I hope he continues to be sensitive despite the gender norms that will push him to be "tough." I love that he gets his patience from his dad and his constant caring from me. Although, I can see he will be a "worrier" like me, too. (Boo!) Landen smiles at everyone, is wonderful with kids both young and old, and knows how you feel before you even tell him. He's very observant, especially when it comes to feelings. Sometimes he is shy -- he certainly does not like all the attention on him, but he is also very personable. I do not worry about him in social settings at all!

Landen is athletic.
Yes, yes, here we go again... All moms think their kids are awesome. :) And, we do! But, I also know that he has been recognized as being a good baseball player, which seems to be his sport for the past few years. He loves being outside, playing anything really, and, although he loves to read, write, draw, and color, he loves to play, too! The best of both worlds in my eyes... Someday, I'm sure he will be in college playing sports and studying something hard. :) From a very early age, he was gifted with excellent hand-eye-coordination. Often, I find myself daydreaming about what he will do when he "grows up." (Not too soon, though; I'm not ready for him to be grown.)

Landen is loving, helpful, considerate, polite, outgoing, and funny... and I'm sure there are so many more adjectives, but I'll stop, because the most important thing he is... is mine! He is my baby. My oldest son. My firstborn. My friend. Can you believe at 7 he is already my friend? Well, he is. He checks in on me, worries about me, wants to know how I am (especially on days when Graden has appointments), and loves me -- even when I'm crazy. :)

In the last two weeks, Landen has come home with 2 "Caught Being Good" notes, 1 Bowling Award (for being the top boy bowler in first grade), 1 Character Counts Award for Trustworthiness, an email from his teacher, and an excellent parent-teacher conference... And, again, that's only in TWO WEEKS! :)

Sometimes I worry that I'm not showing him enough attention when I'm worried about Graden, or quite honestly too tired to "deal" with him after a long day, and I know that isn't fair. So, I know, too, that I try to overcompensate and "brag" a little to my family about how awesome he is, and luckily, they don't mind. :) Deep down, though, I know that this kid is tough in a different way than Graden. He is "tough" for me, supportive in more ways than he may even realize. No, Landen would not do well if he were the one "sick" like Graden; he would worry constantly. Graden, however, can handle it, and Landen is the "support." Their relationship is becoming stronger and stronger despite the "brotherly fights" that happen here and there. :)

It's amazing that I was blessed with two little men who handle everything life gives them with grace, ease, and humor. As their mom, I honestly learn from them every single day and worry that someday my heart my burst with pride.

--
Disclaimer: Please don't take this post as me believing that Landen is better than anyone else's child. Goodness knows I love all "my kids" - biological or not. I just had to share why Landen is perfect for me!

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.

After The Break: I'm Back.

I could start by telling you every detail of the past several weeks, including how wonderful our holidays were, but I won't. Instead, I'll get straight to the point: We had the best Winter Break ever.

Not only did each of us make it through several weeks without being sick (minus some sniffles and sinus headaches), but we got to spend more time together in the past three weeks than we had in the past three months. And, no, I am not exaggerating.

Some of you know, this break came at the perfect time. I reached my limit last semester and almost gave up. I needed this break in more ways than one...


I'm sorry that I haven't blogged any updates, but to be honest, I stayed off the computer as much as possible. See, the boys think I "do homework" when I'm on the computer. So, I stayed away. I played all sorts of games, read books, watched movies, cleaned house, and reorganized closets, drawers, files... You name it. I'm sure that doesn't sound so fun to many, but surely a few of you can relate to my need to "reorganize" things. It makes me feel put back together and helped me relax over break, which is exactly what I needed. Well, that and time well-spent with the boys...

I don't mean the kind of time where we sit beside each other while each of us does our own thing. No, I mean the kind of time where we give each other our full attention. It was wonderful... Good for my soul... And priceless. Absolutely priceless.

So, now, as we get back in to the swing of our schedule, I am back, feeling stronger and more relaxed than I have in several months. I actually feel prepared again, like I did going into 2012. I feel like myself... Mom, teacher, writer. I even miss my friends and am working on making more of an effort. I'm Aunt, Daughter, Wife, Sister. I'm happy, that's what I am.

All because of some "me time" and time with the boys and hubby. Amazing what a little love can do.

Well, a little love and no work. :)

As far as appointments go, we are heading to Riley on Friday, January 25th for another MRI, test, and appointment -- all in the same day, so we should get results quickly. Keep your fingers crossed and send prayers and positive vibes to Graden. As always, it helps keep us (me) going.

Happy 2013!

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.

Speechless and Silent for Sandy Hook.

I'm not sure where to start. I'm not even sure I have the words.

You see, last week was bad. Horrible, actually. Then, this happened and things changed. 

Let me digress. 

I remember exactly where I was when I heard about Columbine and Virginia Tech, both of which happened after I graduated high school. I think that's important, clearly I paid more attention to the news as I became an adult.

With the exception of September 11th, I can honestly say I was not as affected by those events as I was by Sandy Hook's tragedy. 

Is this because I am a mom? I'm not so sure; I know many people sick to their stomachs by the thought of someone shooting 20 innocent little children who are not parents. 
Is this because among those sweet lives could have been my own angels? Landen is 7; Graden is 5. Yes, it could have been them, and that is too much to handle.

Even more than imagining my boys in the school, even more than the mistakes in the news' reports, even more than the contradictions in who did it and why, even more than the questions I couldn't help but ask, I hated the pictures I saw of the victims - the children. Let me explain.

When Columbine happened - or Virginia Tech, I read or watched the news. I wondered who and why and tried to understand. But, I never, ever remember seeing faces of victims, and I was okay with that. Sure, I prayed, sent love and positive thoughts, and mourned for the losses of so many families, but I never thought about their faces. I'm not sure why - I just didn't. 

But, last Friday, I was home - with both boys - when I heard about Sandy Hook Elementary School. Immediately, the social media sites were bombarded with stories, and shortly after, pictures of innocent little faces. Those faces had names. Parents. Siblings. Friends. They probably even had Christmas presents hidden in closets. Unfinished projects at school. Pets waiting for them to come home...

As I scrolled through Facebook, pictures displayed smiles of happy kids who had to die at the hand of person they did not know. A person who scared them, stole their innocence, and took them from their loved ones. More than being sad, I was so angry.

My point?

Each day I struggle with the possibility of losing my child. Deep down, I know I shouldn't live with that worry, and I should live each day like it may be our last together... and, trust me, I try. But, these little souls have stuck with me for the past few days as we continue to get news of Graden's newest challenges, and no matter how heartbreaking the news is, how frustrating this journey has been, or how much I hurt watching Graden struggle, I wouldn't change a thing, because he is still with me. I'm ashamed, but so grateful, to admit that it took these 20 sweet peas  to remind me. My hope? These lives do not die in vain; instead, I hope their families sacrifices lead to major changes in all our lives.

If you haven't seen "The Voice" tribute to the victims, please watch it. It is simply beautiful.

The journey that brought us here.

I'm going to do something I haven't done before: I'm going to share Graden's journey. 

Sure, I've told you bits and pieces, memories here and there, and relevant information so you could try to understand that he has been struggling from the beginning. But, I have never truly shared (other than with a very few) the horrifying details of Graden's past. 

Before I post more, though, let me tell you how his appointment went today!
Today, we visited the Doctor who, we truly feel, saved Graden's life. He is a Pulmonologist and is amazing; there was an immediate reconnection with Graden, and both Phil and I were smiling as we watched. 

Of course, I can't speak for Phil, but I'm sure he would agree: watching a doctor be so involved with your child, who is struggling with anything, is a humbling, calming experience. Needless to say, we were instantly put at ease.

Long story short, we are finally addressing the side effects of Graden's journey that began so long ago. And, maybe I shouldn't say finally, because, honestly, our Pediatrician has done all she could do -- she has been a blessing and today our doctor acknowledged that she had followed the same steps he would have. 

So, after a long "catch up session," he ordered a test, some new medications, and set us on a new path of treatment for Graden's inflamed lungs. We feel very optimistic today. We know how quickly things can change, but it's such a nice feeling to have for now.

His journey has been on my mind a lot lately; yes, even more than normal. So, I think that's what made my decision for me to share today: the "catch up session." It took me an hour to answer the doctor's questions of "what happened next" and "how long was he sick then" and "when was that diagnosed" -- an hour! Every single year -- every few months -- Graden has been dealt a new card:  RSV, a collapsed lung, seizures, hospital visits, MRIs, CT Scans, Xrays, EMS rides, 911 calls, Tonsils/Adnoids removed, Tubes in ears, more seizures, fevers, colds, coughs, pneumonia, bronchitis, trouble breathing, brain defects... The only thing that has remained the same has been his dimples and humor. :)

Today, when the doctor said, "We always knew it was a possibility he would have trouble from the trauma he experienced when he was young," I knew it was time to share the details. There have been bad days in between, but I'm just not sure I will ever truly get over this one specific day...

Warning: The words that are about to come out of my mouth may upset you. In fact, they probably will. Read with caution.

Here is part of a personal story I have been working on this past year (since we found out about Graden's brain defects); it's about his journey. Someday, I will complete this book and share it with the world. The chapter I will paste below is about "that day." Again, read with caution. If you continue, let me say thank you for reading something so personal, special, and important to me...

Here is the picture to go with the story; this was the 2nd day of his stay. You can see the feeding tube (his nose), the respirator helping him breathe - keeping him alive (his mouth), and his chest tube (under the white tape). The hand is Phil's so you can see how small he was...

Graden's Journey: Where It All Began

The morning of December 6, 2007 I was home with my sons: Landen, who had just turned two the previous September, and Graden, my 3 week old baby. I was on maternity leave and enjoying every minute home with my two boys. Graden had gone to the doctor the day before because he was running a fever and couldn’t keep his food down. He was so warm from his fever that while I was holding him to try to breastfeed him, my husband, Phil, had to put cool, wet washcloths on the both of us. According to our pediatrician, we were to give Graden milliliters of Pedialyte until his fever broke or until he could keep it down. Every few hours he could have a little more.

            Graden was to eat at 8 o’clock that morning, but he was finally sleeping so good that I decided to wait until 9 o’clock. Phil had class at 9 and left the house around 8:30 am. Landen and I were playing in the living room, while Graden slept in his bouncy seat across the room from us. We were afraid to leave him in his crib since he wasn’t feeling well; later, I remember being quite thankful for breaking the rule of letting him sleep outside of his crib.

            Just before 9, I decided to actually walk over and check on Graden. Since he was in the same room, I had been glancing at him obsessively; but, something told me to look closer. I wonder now as I type that how the hell I just knew. Is that what “motherly instinct” is?

            As I stood above Graden, I realized that he looked as though his fever broke because he was no longer flushed. Instead, though, I slowly recognized that he was gray. I remember taking a minute to question my eyes about whether it was really gray. Without thinking, I picked him up. I began talking to him to see if he would wake up. He didn’t. Surprisingly, though, at the time, I couldn’t imagine why, which sounds horrible to say, but it was as though I really did not understand what would cause my son to change color. I knew he was sick, but I thought it was me who was making a mistake.

            I know that I yelled to Landen to give me his sippy cup as I laid Graden down on our ottoman in the living room. He hated being naked, I thought, as I unbuttoned his sleeper. Even more than being naked, he hated being wet. Surely, the water would wake him; I think I said it out loud to Landen, but more for a reassurance to myself, as if saying it out loud would make my actions justifiable. Somehow, as I was going through the steps I could think of to wake him, I managed to hear a voice in my head that said, “Just don’t shake him” because, quite honestly, I wanted to! Again, how horrible to think as a mother of an infant… I just didn’t know how else to get him to open his eyes, and I was trying to suppress the panic that was creeping up my throat.

            Pleading to him to just “open your eyes for mommy,” I grabbed my cell phone – another thing I asked Landen to get me. I will never forget the message I sent via text:  emergency come home now. Simultaneously, I was calling the pediatrician’s office on the house phone – how did I get it? Graden still hadn’t made a noise. While I was going through these motions, I remember feeling like it was taking forever for him to wake up; in reality, it was a matter of minutes. I swear to this very day that I did not know he really wasn’t breathing. Every time I look back, I wonder how the hell I didn’t know… what kind of mom doesn’t know her child, her infant, her new baby is not breathing? He was only about 8 pounds while this was happening; he was small enough that when his heart was beating, it sent his chest up and down – as though he was inhaling and exhaling. He was so still, in fact, that I remember thinking his body was shaking. And, if his body was shaking, surely he was breathing… right?

Finally, after what seemed like hours, I got the nurse on the phone, and as I was trying to stay calm, through tears that began pouring, I started to explain to the nurse that Graden “wasn’t responding.” Just as I said those words, Graden coughed. The nurse heard him (so I know I didn’t dream it) and suggested I get him straight into the ER for testing. She said their office was full until that afternoon and she didn’t want to take any chances – another thing I will be forever grateful for. I had sent another text while on hold, apparently foreshadowing that I was going to need help, even though at the time, I don’t remember understanding how severe Graden’s situation was. The text (which I really don’t remember, asked for someone to come to my house ASAP because of an emergency) I sent went to my brother, sister, and dad, who all live and work close. I didn’t care who responded first, I just knew I couldn’t take Landen to the hospital. I had a horrible delivery with both of my children and could barely manage on my own at home. My dad called to say he was able to leave work and come right over to stay with Landen. I gave him little details when he arrived, because I honestly didn’t know what to expect. I just told him that the doctor wanted him in for tests as soon as possible. Phil arrived just before my dad, and I was ready to walk out the door. Phil, who still had no idea what was going on, had left his car running in the driveway. He told me he had just walked into his classroom at IPFW when he got my text – which was, thankfully, right before he was going to silence the ringer. He didn’t question me; he simply got up and left. To this day he says he tried calling me, but I don’t remember. Every day, I appreciate that we live so close to IPFW.

On our way to the hospital, Graden was awake, but completely lethargic. Phil reached back to Graden’s car seat at one point during our trip to see how Graden was. Usually Graden tried biting or sucking on Phil’s finger whenever he reached back, but Graden did nothing. It was as though Graden didn’t even notice Phil’s hand at all. I remember how much that bothered Phil, even though he tried not to show it for my sake. Through tears and the uncontrollable shakes of my body, I told Phil what had taken place in the last 20 minutes at home. I finished just as Phil was parking in the ER lot. Phil carried Graden in, car seat carrier and all, with blanket draped over the carrier since it was so cold out. We couldn’t see Graden, but took for granted that since he had waken up right before we left, he would still be up 8 minutes later as we walked into the hospital.

The ER registering nurse met us at the door. She seemed as though she was working on something else – maybe even a bit agitated that we came in during her “down time.” Why on earth would I remember that? Regardless, Phil sat Graden’s carrier down on a desk as I was catching her up. I remember saying things like: “not responsive,” “so sick,” “gray,” “hot to touch with fevers,” “our doctor said to just come here,” and so on. As Phil pulled Graden’s blanket back, the nurse looked down and demandingly said, “come on” – as if she instantly knew something we didn’t – and we followed her straight to the back. I remember her saying, “I’ll register you later.” I knew that couldn’t be good.

She took us straight back to the heart of the ER. She transformed into a drill sergeant as she shouted orders at every staff member around and available. Actually, I think she shouted at the workers who were busy, too! Horrible things that I thought I would only ever hear and see on dramatic TV shows. She told Phil to place the carrier down on a long, adult size bed, unbuckle him, and get him out. Phil did as he was told, and within seconds, she took Graden from us and told us to follow her. Instantly, I felt helpless.

We walked into another room just a few doors down that was set up with machines of all sorts, carts full of medicines, and enough staff members to run one of those dramatic TV shows I used to watch.  Questions began flying: “Did he fall?” “Did you shake him?” Shake him? Well, I thought about…“Tell me what happened?” “How long has he not been breathing?” … Wait, he wasn’t breathing? I swore he was. I swore. How could I not know? I was so mad. Mad at myself as much as at the dumb doctors who were spending time asking me too many damn questions when I just wanted them to fix my son. I know now of course, that my answers were helping them to determine what caused him to stop breathing, but it hurt like hell being asked such disgusting questions while I was watching my son suffer less than three feet in front of me. I couldn’t even hold his hand.
            While the doctor’s continued to fire the ridiculous questions at me, I realized Phil was looking at me with eyes that I’d never noticed before. How was it after spending years together that I’d never seen those eyes? “Are you sure?” he asked me with a tone that could’ve been accusatory. Those words hurt me to this day. Phil acted as though he wanted answers and he wanted them sooner than he was getting them. He continued to look at me with despair (which bothered me because now I couldn’t fix my husband either) then switched his gaze back to the doctors trying to establish what had brought Graden into the ER.

I told them every single detail I could think of from the past 24 hours of Graden’s life as they tried to resuscitate him. Apparently on the short drive over (literally it’s less than 10 minutes), Graden had stopped breathing again. I say again, because I’m sure now as I look back that he had stopped breathing at home, too. Later we were told that the nurse who met us at the door had recognized his condition immediately and kicked into action. The doctors told us how lucky we were because “just another minute or two and…” Really? They could’ve left that part out. As if I didn’t feel badly enough for not just calling 911 in the first place, the second I suspected something was wrong. I really just did not know how serious it was, and I certainly did not expect that he truly wasn’t breathing. I even started to doubt my memory. I questioned that maybe when I ran into the bathroom that Landen may have given him a bite of his goldfish crackers – maybe one got stuck. I searched for answers that I didn’t have: answers that I still don’t have.

After a lifetime of trying, Graden began breathing. They were performing tests of all sorts and tossing him around as if he were a ragdoll. Meningitis was their first thought, so I watched them drill a hole (yes, with a drill!) into his leg. He still wasn’t breathing on his own, so a nurse was pumping air into him manually by very rhythmically pressing a balloon-shaped mask over his nose and mouth. Gradually their guesses got ruled out one by one, until finally a chest x-ray got returned that showed Graden’s right lung had completely collapsed. I didn’t even know that was possible. “Serious. Not sure. Still not breathing on his own. Not strong enough. So small.” I remember fragments of the doctor’s statements. I remember knowing how horrible of a situation we were in when the nurses were crying, too. I remember squeezing Phil’s hand so tightly that I felt as if I was hurting him and him telling me he didn’t even notice my strength.

Within minutes of being told about his lung, they got us packed up. A medic transport team came in and made me fill out papers – I still don’t know what they said – to take us straight from Dupont to Lutheran’s Children’s Hospital. The team came in the room wearing suits that I swore made them look like a helicopter evacuation squad. Phil and I swapped looks and I couldn’t help the tears that flooded my cheeks: we thought they were flying him to Riley’s Children’s Hospital.  Instead, we were told we were going to be heading to the Pediatric Intensive Care Unit, which we later termed “PICU.” Thank goodness. They told us to make our calls now. Frantically, I called my dad and then my brother and asked them to spread the word. I remember panicking because I couldn’t remember my sister’s work schedule. Honestly, we weren’t sure Graden would make it through the trip, but tests had to be done as soon as possible and Dupont wasn’t prepared to do them. Whatever it took was my philosophy.

Phil had to drive the car to Lutheran – they told him he could follow the EMS as best he could. I felt horrible he had to drive – alone. At the time though, I got over it quick, because there was no way I was leaving Graden’s side. Phil was respectful of that and didn’t even question my decision to ride in the EMS. He called his mom on the way – who later told me she hurt so badly that she had to sit down when she took the call at work. She hurt for her grandbaby and she hurt for her baby (even though her son was grown up) – a position I’m sure that wasn’t easy. Even though I was allowed to ride in the EMS, they made me sit in the front so that I couldn’t watch Graden and the nurses – that were keeping him alive – in the back.  The entire way from Dupont to Lutheran took minutes (lights and sirens) and one nurse never stopped pumping air into my son’s chest – amazing woman.  I remember the EMS crew very vividly. I remember the driver asking me questions to pass the time and in turn I asked how frustrating it was to be an EMS driver as I watched some cars refuse to move out of the way. They’d move out of the way if their kid were in the back!

Phil got there as we were wheeling into a room they’d prepared. Dupont called Lutheran and told them all about my little fighter. I will never forget the feeling I had when I noticed the clock on the wall at Lutheran read 11 something in the morning. I couldn’t believe so much had happened in just a few hours. I felt like I’d been gone all day already!

Everyone was so nice; but, not nice because they had to be, nice because I felt like they honestly cared. The driver of the EMS even told me he had a son close to Graden’s age, and as he had tears in his eyes, he told me he’d be thinking of Graden. I believed him. I believe that he takes pride in his part in helping people – I admire people like him and I don’t even know his name. I wonder if he realizes the critical role he played in saving my son’s life?

I still couldn’t touch Graden and it was killing me inside. I wanted to hold his hand, remind him that I was still there, and whisper to him my plea that he not leave me. I remember noticing the room was spacious as our nurses came in and out, adjusting machines, moving Graden from the adult bed to a crib-like bed (which he still looked so tiny in). They introduced themselves and asked a few of the same questions that last nurses had, and I answered, robotically. My tears stopped and something came over me: shock maybe? I remember my boobs were throbbing (because I hadn’t been able to feed) and the incision from my c-section burned (because I’d moved around like I was as limber as a gymnast), but when anyone asked how I was feeling, I said fine. How was I going to complain when my son was fighting for his life, and I still didn’t know why? 

------------

Gradually, more tests were performed. Within a few hours of arriving at Lutheran, we met the most wonderful doctors. There were two pulmonologists that work in the PICU at Lutheran. Both of them came in to discuss what was going on with Graden; one (who was a specialist) ended up becoming “our doctor” for our entire stay. Blood work had confirmed what caused Graden to be so sick; they told us together that Graden had developed RSV. It’s a respiratory virus that attacks the lungs, much like pneumonia. It’s common, it starts similar to bronchitis, and most children have the virus before they’re two years old. Since Graden had been sick, when he developed the virus, his system was already “down” and he couldn’t fight back the way a healthy, older child could have. It hit Graden hard and fast. They said Graden was one of their youngest patients they had ever seen with RSV. The RSV attacked him so hard that it caused his lung to collapse. Graden had already been struggling to breathe because he wasn’t feeling well, and his body finally said “enough was enough” – and he quit breathing. Wow. At three weeks old, my son was a fighter – thank goodness.

 What now? That was my question, but I’m not sure I got a chance to ask it out loud. The doctors explained that it was a waiting game from here on out. Graden was on a respirator – that until recently, I couldn’t acknowledge was keeping him alive – for most of his breaths. We were taught how to read all the machines, what to watch for, and what to ignore. The nurses advised us to not stare at them, because they’d be upsetting. As if it wasn’t upsetting enough to just see him hooked up with hoses and monitors everywhere? Every few breaths Graden took were his own, but for the first few days, the machine did the majority of the work. They didn’t know if he would gain the strength to breath on his own again. First, we had to wait for his lung to heal. They had sent him into surgery for a chest tube, shortly after explaining to us what was going on.

Graden wasn’t allowed to have many visitors. No one young, no one old, no one sick and so on. We didn’t want visitors anyway. I couldn’t keep telling them that I was “fine” and that Graden was a “fighter” and that everything would be “okay.” I did not know. No one really knew. Plus, I couldn’t stand the looks that showed how upset everyone else was – and I still felt like I was to blame. I didn’t want to hear who was praying for me. I couldn’t even pray myself. I tried calling some people back here and there whenever I checked my voicemails. Sometimes it was nice to focus on trying to make someone else feel that everything was going to be “okay”… but all we knew for sure is that we would only know in time. I eventually came to hate that word: time. Our parents came up that first day to check on us, as much as to check on Graden. My brother had a cold so he didn’t come up – I remember hearing a sort of relief that he didn’t have to “see Graden that way” in his voice as he explained to me why he couldn’t be there. Our sisters stopped in and out – but I can’t remember who came when.

The first day felt like it lasted three days. They tried removing him from the respirator to see if he could breathe any breaths on his own – and he crashed. Again, visions of a bad TV show flashed through my mind as nurses from everywhere came running into the room. We stood as far back as we could to give them the space they needed and watched as they “brought him back.” They’d regulate the monitors, respirators, IV, and anything else he was attached to, in order to adjust to any changes he made: forward or backward. Every few hours they tested him to see if he could take another breath on his own and become less independent on the respirator. Sometimes it would work well, and other times he’d take a step in the wrong direction.

The first night, I got sick and had to go home in the middle of the night to take a shower and do something about having stopped breastfeeding so suddenly. I remember the nurses bought me cabbage, and I thought they were crazy but so thoughtful. It was so painful. I sobbed as I left my baby – but the nurses promised they weren’t making any adjustments through the night and would call if Graden made any changes while I was gone: good or bad. Phil was there, so that made me feel a little better, but I hated it, nonetheless.

I came back as quickly as I could and remember that I still felt horrible. Upon my arrival, Phil and the nurses asked, “Feeling better?” to which I replied, “Much.” Not at all, was what I should’ve said.