Tuesday, March 17, 2015

Big news.

Big news on the blog today. (Drum roll please......)

We have started weaning Theodore's oxygen! You can probably recall that many many months ago we took him off his vent. (Remember that terrible summer of 2012 that landed him on the vent in the first place?) His oxygen requirement since then has also come down. Way down. 

We took him to the pulmonary doctor the other day, who apparently did not remember that he no longer uses the vent. She was quite pleased that he was doing so well. She also was the first person, aside from his primary doctor, who actually showed some concern about the bleeding from his trach issue. If you recall, last year he was flown to Hopkins because he had a lot of fresh blood and a clot come out of his trach. This has happened 3 times since then. Each time it's over within 30 minutes and he shows no signs of distress but we have no idea what is causing this. So the pulmonary doctor asked several questions and ordered an xray but I've heard nothing back so the old rule "no news is good news" applies. Although it still leaves it all a mystery. 

In any case, his oxygen weaning has begun. Because we already have him off the vent we have saved ourselves from at least 2 sleep studies (thank God... those are the worst things ever) and he is way ahead of the game. If all goes well, we are possibly looking at him being off the vent within a month. And he is doing quite well, but what I didn't expect is that it's not so much his oxygen sats we are watching but his heart rate. It makes total sense I just didn't think about it. He's had several days where he has been without oxygen for extended periods of time and has had no issues. However, yesterday even on his oxygen he had elevated heart rate and low sats. I'm not sure if this is just par for the course or if he has something else brewing, but we kept him on his oxygen all day and we'll see if today is better. Either way, the process has begun and that is seriously exciting and a little bit weird.

On a side note... I've actually lost him. Without his tubing I have no idea where he is and I've had to go looking for him in our home on several occasions. This could get dangerous. :) 

 

Sunday, February 15, 2015

Out.

A few things for this blustery winter day.

#1: I can't recall a better coffee experience than I had this morning. The smell, the warmth, the taste.... everything was exceptionally nice on this cold morning. I'm savoring every second.

#2: I'm out of almost everything. Milk, flour, coffee, cheese, and butter.... what's a girl to do? And I am certainly not heading to the store in this weather. Ben being on night shift means hauling all of the kids with me and I won't risk that. Maybe tomorrow will be a little nicer.... I think we have a few Ramen packs to get us there. 

#3: Yes, I still like Ramen. Thankfully my whole family does so that's a plus. 

#4: Ramen Girl with Brittany Murphy was a good movie. You should check it out.

#5: (No more Ramen, don't worry.) I visited my Grandmother with the kids yesterday. I haven't seen her since the Christmas before last and I'm pretty certain she's only met Theodore twice prior to our visit yesterday. Not that he stood still long enough for her to see him yesterday but, none the less, we were there. I think the five of us wore her out pretty quickly which I feel bad about, but I'm so glad we got to spend some time with her. I love my Granny and wish I could see her more. Love your family, folks. We aren't promised tomorrow. 

#6: I'm not sure whether it's my view of winter or an actual fact, but winter hasn't seemed too terribly bad this year. I know we've had some bitterly cold days. Trust me, I know. But I think overall it's gone by kind of quietly. I usually hate winter and can't fully enjoy fall because I know it means that winter is coming. Just like House Stark. (DON'T SAY ANYTHING. I'VE ONLY SEEN UP THROUGH SEASON 3.) But this year, I decided to embrace to the best of my ability the winter season. It will hopefully be over before we know it, but until then we'll all be huddled in front of our one space heater trying to stay warm. 

#7: Not being able to communicate with Theodore fully is so frustrating at times. He'll come into the room visibly upset and he'll stomp his feet and clap his hands in frustration and I have no idea what is wrong. He has learned to ask for some things but hasn't learned how to sign feelings. I hate not knowing what is going on. 

#8: I would say that developmentally Theodore is around the 24 month mark. He's asking for diaper changes at times and usually needs one when he asks. He is learning his colors, and manners, and is standing from a squatting position. All his therapists and teachers say that he is doing very well and they have seen him grow this school year. 

#9: We have a pulmonary appointment next month and I suspect we will be weaning him off of his oxygen. He is doing really well with little oxygen and I don't think he'll need it full time for much longer at all. What does this mean as far as the trach? Well, in reality, not much at all. Don't get me wrong it is absolutely the first step. And a huge first step at that. And life without oxygen could be much simpler. But we haven't fully broached the whole trach issue yet. What we know is that he has to be able to swallow (which he can't- although I think he's starting to try) and, obviously, his airways need to stay open. As of right now, they still collapse. BUT no oxygen would be AMAZING. I'm not looking too far ahead and just trying to celebrate all the victories. 

#10: The kids found a mouse in their room last night. They screamed at first but then they named him Ralph and are now leaving bread out for him. Not sure I can let that last too long. 

 

Friday, February 13, 2015

Sleep in.

I've never been a huge fan of sleeping in. I am, however, a huge fan of naps. I've taken naps ever since I can remember. In fact, I can recall a particular nap where my mom and sister used a wooden spoon to snap me back to reality when I would not wake from a deep deep sleep for a phone call. (Thanks, guys... still have scars from that...) 

My point is this: I would do anything for a chance to sleep in. In fact, I feel like I live for mornings where Theodore doesn't have school because when that's the case I can roll out of bed just before 8. (Literally roll.) But when he does have school I need to be up and moving and dressed (yuck) and ready by 7. Every morning. And on the weekends I have to be up by 7 because that is when the nurse leaves. So I really don't have the chance to sleep in. 

And I do realize that 7 is not that early. A lot of you are up at 5 or 6 every morning and, basically, that just really stinks. So I don't envy you.

However, it's a catch 22 for me because IF Theodore is home from school, which allows me to sleep in, then our regular routine of schooling the other 3 is completely interrupted and it becomes ridiculously hard to get anything done. It's a lose-lose really. Welcome to adulthood, right?

BUT this morning was the best of both worlds because Theodore didn't have school AND it's a Friday. We don't do school on Friday's. BOOM. I think the universe stood still for a moment. 

Also, I think it should be noted that although Benjamin hates the fact that I take naps sometimes (he calls me an old woman) he's never woken me up with a wooden spoon, MOM. SCARS. :)  

Thursday, February 12, 2015

Fill a book.

I could fill a book- a big book- probably at least the size of one of those Readers Digest Condensed version books- of nursing stories. 

I genuinely have no desire to do this. Mostly for the fact that I am truly grateful for our nurses. And really, there's only one that I have an issue with. Like, I'm not sure how she's actually managed to live this long. It's scarey. But this post is not to throw her under the bus, or talk about how much sense I feel she may be lacking, or express my frustration over a folding door she just cannot figure out. 

This post is purely to announce that it has spilled over into my dreams. My dreams, people. Not that my dreams were anything really worth mentioning before. Usually they are made up of every day lack lustre things- the kind of dreams where you wake up and realize it could have been a reality in a really boring common way. It almost feels like my already overwhelming boring life was extended by 6 or 7 hours. 

Now that I think about it, it's no surprise that this nurse would make an appearance in my dreams. The only 'up' side was that we held no humility, grace, or decency towards her feelings and were able to express how we actually felt. Of course, even in my dream I felt guilty. 

Stupid.

Anyway, only by the grace of God I truly believe, we have had no major incidences. And her coming allows us to get out of the house which we are thankful for.

Moving on.....  here's two pictures of cutie himself before leaving for school this morning.


 

 

Wednesday, February 11, 2015

Confession

Guys, I have a confession to make. Here goes......

I threw out all my houseplants.

There. I've said it. All of them are gone save for an aloe, because God bless it that plant lives through anything, and a dying orchid just because I can't give up on that one yet. 

They're all gone. Including a plant I've had practically since we got married almost 12 years ago. I abandoned it on the deck to fend for itself and it finally gave in to the terrible conditions. It's dead. Dead dead. (Note: I am in NO way saying that it's a picture of our marraige.... or AM I??? )

It was time. Time to go out with the old; the dearly beloved, close to my heart, old. They sat and looked at me every time I walked into the kitchen with their sad droopy dry leaves and asked me why I no longer loved them. I could never answer. The truth is that I still loved them. I still do! Even though they are now compost. But I had to let them go. And now, the guilt they brought me from their presence is gone (for the most part) and it's quite freeing.

This may seem so silly to some of you. You may be wondering how someone could be so torn by plants. But I really loved them. I loved having green and life and nature inside my home. I loved the look and the feel. I loved the comfort and the familiarity and even the smell. 

But I couldn't keep them anymore. They unfortunately only represented clutter and another responsibility. It was time. 

So I said farewell, old friends. You've been pleasant and a happy place for me. I'll miss you. And then I realized I was talking to plants and the whole relationship was totally one sided; and I chucked them. 

 I've got to be honest---- I've only missed them a little tiny bit. I more miss the idea of them. The what-it-could-be part. I remember the happy days when they were, you know, alive and it hurts that I'm not in the right place in my life to keep them and care for them and enjoy them.  What I do know is that now they aren't that constant reminder of what things used to be like. What I used to have time for. 

My house feels cleaner, less cluttered, and alive. And I hope that maybe one day I'll be able to enjoy plant life inside my home again.