I have to, so I will.

We got the new CPAP machine.

It looks, and sounds, scary. Here is a picture from his last sleep study so you can see what it looks like:

Last night, before bed, we set it up together. The machine itself is the exact same model as the one we used to have, which I think helped Graden's transition. The mask is different, though, and I was worried he may not like it even though he said he did during his last study.

As I was getting him attached, connected, and fitted, he struggled. I could tell he was tense, which isn't usually the case with G.

After I got him all hooked up, he snuggled into his blankets, and I turned it on, waiting for a response. He took slow breaths and looked so fragile. I don't know why I felt like crying... he's been wearing a mask for months.

Finally, I asked him how he was doing. He tried to smile and nodded. I gave him a "good job" and told him to close his eyes. Eventually, I tip-toed out of the room.

About 15 minutes later, I heard him... "Momma!" Before I could even get back to his room, he yelled again, "Mommmmaaa!" I panicked! (Although, have I told you how much I love him calling me "Momma"? It melts my heart that the "-ma" hasn't dropped off yet.

Luckily (if one can say finding their child sitting straight up in bed, with fear in their eyes, crying, reaching out for you is lucky), he was okay. When I asked him what was wrong, he answered that the machine was "breathing too hard for him" and "it was about to give him bad dreams." I almost smiled at his seriousness.

After calming him down, we went through the steps again, talking quietly about why it was so important to wear his mask... I sat in the room until he drifted off, with promises of leaving the door open as I left.

He did great through the night... the mask stayed on and he slept well.

Very proudly, he pounced into my bedroom this morning (bright and early) to tell me he really liked it, and he "even took it off by himself when he woke up."

Thank goodness.

I love him for so many reasons, but my favorite is his strength... his "I have to, so I will" attitude. He even told a friend of ours yesterday that "He got a new machine that will keep him alive." At first, I didn't know whether to smile or cry, but I held it together, smiled, and gave an "Aw." He pays attention to me when I talk, but I can't say for certain that I say his machine "keeps him alive." I know it does, but I think I use other words. So, when he summarizes my paragraphs and our talks and gets straight to the point, I'm awestruck by his candor. Sometimes I let myself be saddened by what he has to go through, despite knowing it could be worse, but it's never long before he reminds me that he can handle it... that he has to, so he will.

Try and try again...

The results came in: Graden is making the switch from a BiPAP to a CPAP.

Apparently, this usually happens the other way around, but Graden needs a continuous pressure without any varying adjustments. (The BiPAP is a bi-level system and offers a different pressure if Graden fails to take a breath within a certain period of time -- it reminds me of blowing in a baby's face and watching them take a breath; the same method applies in the BiPAP.)

They say many people move from the CPAP to the BiPAP because the BiPAP is easier to tolerate... They say, they say, they say! Who really knows? If there's one thing I learned, it's that it is different for everyone, and even then, it can still change.

So, instead of offering the second pressure when he doesn't take enough breaths, we're switching to have a continuous flow of air, which is supposed to help him breath regularly... Try and try again...

We get to pick it up tonight after school, and I must say that I'm anxious. Not that I'm not excited, because I am. Goodness knows I had forgotten what it was like to sleep with a baby monitor and don't miss the days of waking up during the night. But, that doesn't take away the worry that this machine still may not be what he needs... Yes, I know: If it isn't, we keep trying.

I just realized I haven't heard back from our Neurologist at Riley, so I'll be checking in this week. Time flies when you're having fun, and all that... :)

On a good note... Graden is doing great in school (well, with a few minor exceptions - ha!). Landen keeps telling me he's proud of his brother, which just melts my heart. I wonder if Landen realizes that Graden is trying to be exactly like his big brother? :) Both boys can be stinkers, but I'll tell you, I hope they continue to support each other.

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.