Thankful for doctors and nurse practitioners today...

So, I went to the walk-in clinic this morning for this cough I've had, thinking I may have bronchitis or something. I figured I better get in and checked since I had the day off. The place was packed, so I had to wait. Boring, but I lived. The doctor/NP was great with me, but she said my chest sounded tight. One X-ray and another hour later, they call me back again to advise me to head to the ER. She said she saw some deflating in the sacs at the bottom of my lungs but wasn't sold on it being pneumonia. She wanted to be sure and apologized profusely for taking my time. I tried telling her it was okay and that I'd rather be sure than worse off later, but she seemed to still feel badly. 

I wasn't at the ER too long. The doctor there confirmed what the clinic had seen and explained everything to me. While I am sick, I'll be okay, and the doctor/NP did exactly what she should have. He told me once again how sorry he was... Like they did something wrong. I told him how much I appreciated him checking and explaining it all to me. He smiled, then told me how much he appreciated my words, because so often people get angry when they're sent in for a check or follow up, saying things like it's a waste of their time. 

That really bothered me... 

So, no, I didn't want to be at the doctor and hospital for several hours today, but I'd rather know what's going on and be able to be treated correctly than for her to misdiagnose or - worse - ignore it. So, to the lady who treated me today and followed through with something she knew wasn't right, thank you. I got the proper medication because you took your time with me and sent me to another doctor for immediate attention. 

Let's remember to be patient with one another, especially those people working to help us. 

Control.

I did not mean to let three weeks pass before a post; my apologies.

Somehow, school (reading, writing, researching, grading...), laundry, organizing (cleaning, moving, unpacking), appointment-going, and flu-fighting (among many other things) stole me from you briefly.

Allow me to catch you up on our lives.

Our house, you ask? It's for sale. Still. Yes, I know... it's only been a few months. But, it's beginning (Who am I kidding? It did from the start) to drive me crazy. We just want it sold. No, we need it sold. No, you don't have to buy it, but I sure hope someone does. :)Soon. Our realtor - God love him - works hard; we are so lucky to have him!

The hubby, Landen, and I have all managed to be sick. Landen is doing much better since my last update and is currently enjoying his spring break. The hubby and I had a 24-hour flu, which was a nightmare. How is it that we manage to get the boys flu shots and forget about ourselves? Note to self for next year: get that flu shot!

Graden - knock on wood - has managed to stay healthy.

Since my last post on March 14th, though, G has had six doctor's appointments, some blood work, swallow therapy, a neuropyschology test, and I'm sure I'm forgetting something... all of these things followed the sleep study and the V-EEG. Tough kid. Stressed Mom.

We have been using the BiPAP machine, and it seems to be helping him sleep a bit better - although, there are still nights...

We haven't heard back from the bloodwork, which usually means it's okay. Maybe I'll call them today...

We received news from the Neuropsychologist yesterday. The good news is there are no concerns cognitively. (Duh. I knew he was smart.) :) 

The not-so-good news is that there are still concerns about his attention and impulse -- side effects from his brain defect, although the same could probably be said about me. Ha!

We will be meeting a therapist soon to work on "things." They seem hopeful that we can work on preparing him for the school setting... Can you believe my baby will be in Kindergarten in August and SIX YEARS OLD in November? Whew!

The biggest stressor has been the anticipation of Friday's appointment at Riley. We thought we sort of knew what to expect (how's that for confidence?), but so much has happened since our last visit -- three long months ago. Graden has had so many tests and new developments...

I'm just going to put it out there: We are worried. I am worried. Graden is... well, Graden isn't. He's his usual witty, energetic self. Thankfully. But, this time, that doesn't make it any easier.

I can't help feeling like I'm not doing enough. I want to handle it for Graden, carry the burden, the weight. I want to control it. To fix it.

But, I can't.

I hear myself making excuses. I try to be so patient, but I am not. I want answers. I try to explain what the doctors, nurses, and specialists say, what the tests results mean, but I can't. I can't stress the urgency in their voices to my family, my friends, Graden's friends. I hear myself downplaying, hoping with others, but I worry myself sick. Literally. He has obstacles, challenges. I see them. Every day, I see him struggle.

But, I can't fix it.

I try so hard to live "normally." I want him to play and just go about his childhood, and he does, but he's different. Every child is different (boy have I learned that!), and different is okay. Good, even. Graden, and his special-brain as we have all started calling it, is a "normal," ornery, little five-year-old who still gets in trouble for peeing on the toilet seat, sneaking a fruit snack, or not sharing with his brother. Honestly, those moments may drive me nuts, but I'm so grateful for them... they make us "normal." Right?

And, so, while I work through my own issues, I'll say this again (my fault, not yours) - I miss my friends, and I'm sorry I come and go. I will get better. I will. Thank you for continuing to ask me to do things even if I repeatedly cannot join you. Please know that there are just days, weeks that go by before I even realize that I haven't blogged, responded to an email or text, or called to make plans. Time is not something that has been on my side this past year.

Yet another thing I cannot control. :)

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.