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? :)