Violent Ink

My grown-up boy

eIMG_4800
Originally uploaded by kicksie.

People say it goes fast, but seriously. Where'd my baby go?

I have been so bad about posting to this blog, and since this was going to be my version of a baby book, that is awful. But we're taking lots of pictures, so hopefully that counts toward something. Anyway, here is what is going on with the little guy.

-- Right around his birthday, during the two weeks that Judah was gone of course, Isaac took his first few halting steps. He got beyond that pretty fast, and started trying to run way before he had the balance for that. He has had bruises on his forehead basically since he started taking those steps, and after a face-plant on the playground, he also had a skinned nose and forehead for a little bit.

-- Now he is running around like a maniac. It seems impossible that someone with legs that short could move that quickly, but he does, and we're constantly chasing after him.

-- The kid has a sense of humor. He cracks up over the silliest things, and thankfully, for now at least, he thinks we are funny. Whew.

-- Last weekend, he got his first haircut, and suddenly, he looks like a boy instead of a toddler. There were long parts on top and in the back where his newborn hair never fell out, so it was getting really flyaway and uneven, and really long around his ears, so we hit the place at the mall. Unfortunately, is was the weekend before school started, so it was a zoo, but we all survived.

-- Isaac loves most foods. Today, I felt like we were being judged by the adjacent table when we got him chicken fingers and fries at a restaurant, but he loves green veggies and salad and fish and curry and jambalaya ... I'm not going to worry over the occasional french fry, ya dig?

-- The boy loves to say "hi," and is saying "bye-bye" every so often now. He says ma-ma and da-da, but doesn't exactly call us those yet. I mean, he says them to us and about us, sometimes, but he doesn't say them to get our attention yet, if that makes sense. Within the past few days, he's started imitating intonation, which is so funny (and has made me realize I REALLY need to start watching my mouth).

-- He adores music and loves to dance. Sometimes he does the "running baby," where when a song comes on, he starts running really fast in place. It's hysterical. Our current favorite, thanks to it being the first song on my running list on my iPhone, is "Just Dance" by Lady GaGa. You can't tell me that's not kids' music. Her name is GAGA.

We love him, and I need to update more.

Six months ago today

Peekaboous interruptus
Originally uploaded by kicksie.

On Feb. 9, 2009, we finally got home from Isaac's 12-day stint at the hospital, where they investigated what's going on with his lungs and why he breathes fast.

They didn't find anything specific, and we got stuck in an infinite loop of tests.

But I have to say, without a doubt, I am so glad that we pushed back against the doctor, who didn't want to let us leave unless we put a G-tube (feeding tube) into Isaac's stomach. He was sure that the fast breathing was caused by him aspirating food into his lungs, and we were sure it was not (since he hadn't had a single cold or cough until a week after starting day care).

Now, six months later, he is still breathing quickly, but he is growing and thriving and eating and drinking like a champ, and aspiration still appears to not be an issue.

I wish we had an answer, but I am thankful that we didn't get bullied into that unnecessary feeding tube. That was one of the most stressful experiences of my life, wondering if we were making a mistake in disagreeing with the doctor. But I learned that trusting my instincts is a good move -- especially at that point, when I had literally spent 24 hours a day, 7 days a week with my baby except for the previous two weeks (I had just gone back to work when this all happened).

I hope that things continue on the current track -- at Isaac's last checkup, they said he was doing great, and lungs sounded clear, and that in four to five months, if he is still doing that well, we'll start ramping down his medications. (Right now, he's just on two -- Flovent inhaler and Prevacid for reflux.)

I just can't believe how different things would be if they'd put in that tube before we checked out.

I have been remiss

Isaac and the bear are 1
Originally uploaded by kicksie.

and have barely posted to this blog lately. It's just been very busy since I returned to work, particularly since a gargantuan layoff a few weeks ago.

But, look: Isaac is 1! Isn't that crazy? My teensy little baby has morphed into a little person with a whole lot of personality. He babbles! He claps! He likes to dance if he likes the music! He loves playing with books! He chases the cats up the stairs! He giggles hysterically if you chase him up the stairs! He eats regular-person food!

He is simply amazing.

Isaac eats banana

It's more entertaining than it sounds, I promise.

In other news, the kidlet is NINE MONTHS OLD today. Holy. Moly.

Yay! And whew. And we were at Hopkins for 12 days why?

Isaac and I went for his follow-up appointment with the specialist this afternoon, and it was very positive. His lungs sounded fabulous, and he had gained 2 pounds in less than a month, so they were very happy with his progress. After talking with two doctors at the practice (our specialist always has to call in another doctor for some unknown reason), we determined the following:
 
-- Isaac doesn't need to be on oxygen when he sleeps anymore.
-- His use of the albuterol puffer is changed from 3x daily to only as needed.
-- When he finishes up his course of steroids (one more week, taking 1.3 mL), he won't need more.
-- When he finishes up his course of low-dose antibiotics (two more weeks), he won't need more.
-- We'll regroup and follow-up again in three months, at which point we might decrease his other puffer med, too.
-- For the time being, he will stay on the acid reflux medicine.
 
So that was all very good, and we are relieved. I got the impression that our specialist felt like the attending at the hospital was overreacting, but he was very junior to him and couldn't do anything about it. The other doctor from the practice who came in to talk to me said that we still don't know exactly what is causing his high breathing rate, but that it really could just be nothing -- something that he will outgrow. We are still waiting 2-4 more weeks for the results from the blood test from the hospital for a bunch of rare lung conditions, but this doctor said that he didn't expect those to come back positive, that if he had a problem as severe as that, it probably would have shown some signs during the other tests.
 
Anyway: Hallelujah!

Guess who's still happy to be home?

Laughing boy
Originally uploaded by kicksie.

Spencer? Well, sure.

Lucy? I guess.

Oh, I know! Isaac!

Yes, yes indeed! This is him on his 8-month birthday on Thursday. He was very happy on Thursday morning, and we took some pics before school.

Woooo!

Isaac is doing great at home. He's eating like a champ, having a grand ole time, very happy to have made his triumphant return to day care. He's dealing well with all of his medications and is doing so well with the oxygen at night that he wears the cannula without the tape or bandages on his face to keep it in place. (Still, we are really hoping they tell us at his followup that he doesn't need that anymore.)

He's still a little anxious about his food, I think a result of having lost weight with the stomach virus before the hospitalization, recovering from having a feeding tube for 10 days and maybe a growth spurt. Sometimes he gets really upset, and we can't figure out what it is, and it turns out he reaalllly wants a bottle or some solid food. But his old signals are gone, so we are all still adjusting to that.

Overall, though, things are great. We are hoping for the best possible news at his followup on Feb. 26.

Thank you again for your thoughts, prayers and support. We have appreciated it so much, I can't tell you.

The long road home

Ahhhh, we are all home, and that is awesome. It's a little strange because I kind of feel like we got stuck in that infinite loop of tests because we were seeing the experts, but that they are so used to seeing some of the worst scenarios that they felt they had to keep on poking around until they found something. (Knock on wood and all that dumb superstition stuff that everything really is OK and Isaac improves now that he is home, though.)

I have been rereading two different books the past couple of weeks -- rereading books being how I deal with stressful situations as it takes my mind off whatever is going on but doesn't require 100 percent of my attention to follow the plot. At the hospital, I was rereading Straight Man by Richard Russo. The main character, a wry English professor, keeps coming back to the topic of Occam's Razor (his dog is even named Occam), the philosophy that the simplest explanation is usually the right one (that's an approximation). Amusingly enough, the other book I was rereading, the chick-lit-iffic Good in Bed, had a similar line of thinking. When the main character was discussing something or another with a doctor-friend, they referred to "that old medical school line," "If you hear hoofbeats, don't look for a zebra."

Yes, thank you.

I mean, we still don't know for sure exactly what is going on with Isaac, but all indications are that it was really bad timing that he had a bad cold when we went to the specialist and that it's just something minor. But even though there were simple explanations available, it felt like the doctors kept pushing for it to be something else, something bigger. Maybe with black-and-white stripes.

Anyway, we're all back home together, and, um, Isaac is just a teeeensy bit happy about it:

Homeward bound!

Another guest post from Judah

The attending pulmonologist came around this morning (much earlier than usual) and gave us the ok to go home.  We will be bringing oxygen home with us for the short-term (just while he sleeps), and then we'll have a follow-up appointment on Feb. 26th with the clinic pulmonologist.  They're also going to draw some blood to test for a couple of rare lung conditions, mainly to rule them out.  That test will take 4-6 weeks to get results back.  The cultures they took when they did the bronchoscopy grew a small amount of a couple of different bacteria but not a large amount of anything, so they're confident that the antibiotics he's on will finish killing those off.  We'll also be meeting later today with the Hopkins Home Care people, just to go over the oxygen setup at home and make sure we have what we need.  The follow-up path is pretty clear, although he will probably need one more CT scan to see how things are progressing.  If things are getting better on their own, then nothing more will really need to be done.  If things aren't getting better but aren't getting worse, they'll probably want to do a lung biopsy (after they get the blood test results back) to see if they can figure out the underlying cause.  If things get worse, then they'll be pretty sure it's aspiration and they'll push for a g-tube.  Hopefully, we won't have to go down the biopsy or g-tube road.  Anyway, the short version is: we're going home today!  The antibiotics will continue for another week or two, and the prednisone will continue in diminishing doses for 2-3 more weeks. 

Getting closer ... maybe

All right. We are told that Isaac sounds better today and that if he "tolerates" bottle feeding for the next 24-ish hours, we can go home tomorrow. His "crackles" in his lungs are sounding better, he's had solids a few times, and they are willing to let us go home and re-evaluate in a few weeks if he handles the bottles OK. I have high hopes because I feel like the return of the crackles the other day didn't happen because of the bottle feeding. Hopefully I am right.

Oh, and yesterday we got moved to "intermediate care" on our floor, which doesn't seem to have to do with our care but more with someone who needed more acute care being put in our old spot. So now we are in a room with four patients, no closet, no space and the most uncomfortable bed-chair ever. Woo.

Anyway, if he goes home tomorrow, he will be eating solids and then his formula thickened with cereal, be on reflux meds and a course of steroid and antibiotics. We can handle that. Crawling and being at home will do wonders for him, I think.