Violent Ink

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.

Grrrrrrrrrrr

Sorry this is so late in coming. We talked with the doctor from the specialist's clinic after the test yesterday and this morning, but literally everything he has said has been contradicted by the attending, so we didn't want to confuse things. Unfortunately, we literally did not see the attending until after 6:30 this evening.

 

Once he got there, we asked him to explain to us very carefully why Isaac is in the hospital because we are still confused about that. He went over Isaac's CT scan with us and pointed out some areas of concern. This included some pockets that appeared to have some mucous or something in them, though when they looked at them more closely in the bronchoscopy yesterday, they didn't find much of anything except minor inflammation.

 

He continued to talk about how he thought this really was a case of aspiration of food. We asked why, since Isaac hasn't ever displayed symptoms of it before -- literally hardly any coughing, definitely no frequent spitting up, and his doctor hadn't said anything about hearing any problems in his lungs at any of his checkups (plus, he saw the breathing specialist at the practice twice, and she didn't either). We asked why not reflux since that seemed more probable to us. Even though he doesn't really ever spit up, since we've started talking about it, we did realize that his cue that he didn't want to eat right then was to arch his back, which is a symptom of reflux. Plus, I have it.

 

It got a little weird because Judah and I had separate conversations with him. We tried to both go out in the hall to look at the CT scan, but Isaac wasn't happy being left alone in his crib, so I went back in and then we switched.

 

I had earlier asked if there was a possibility that the crackling in the lungs going away and coming back would have to do with Isaac getting over the bug he had when we got there and then catching something else. Dr. didn't seem to think that was it. Later, when he was showing me the scan, I asked if he would consider the timeline again. Two weekends ago, Friday through Monday night/Tuesday morning, Isaac had a bad stomach bug and threw up multiple times, which was his first real bout with throwing up vs. spitting up. Wednesday morning, when he finally was over the puking, he woke up with this congestion, which was the congestion he had Thursday when we went to the specialist appointment that landed him in the hospital. (Actually, now that I am writing this, I am realizing, too, that the crackling returned after he threw up after his albuterol treatment the other night. Hmmmm ...) So was it a possibility that he had aspirated then -- during the vomiting -- and was not aspirating every time he eats?

 

So the current plan is to start him on Prednisone and antibiotics tonight and try to calm the inflammation and get rid of anything bacterial in his lungs, then see how he does with bottle feeding again, then hopefully get out.

 

We are just supremely frustrated because they are fixated on aspiration and that we have to avoid all possibility of it -- they keep mentioning a G-tube as the easiest way to get him home faster. We would like to avoid that at all costs because it really does seem like there are simpler explanations to be had. And, oh yeah, there is the part where Isaac has been doing fine for the past 7.5 months.

 

Long story short, it was a supremely frustrating day, but at least we have a semi-semblance of plan for the next couple of days. Once they are convinced he can eat OK, I think they will let us out. So keep your fingers crossed that the prednisone and antibiotics kick whatever this nastiness is that is complicating things so he can eat again and we can leave!

Post-bronchoscopy update

Isaac had his bronchoscopy today (looking around in his lungs with a camera, plus taking samples for culture), and it went pretty well. They didn't find any structural issues or major signs of inflammation, just some very slight swelling in his vocal cord area, trachea and the area where the lungs branch to the sides. The doctor said the areas did not react badly to the test (i.e., didn't bleed when suction was applied), which means they weren't uber-sensitive or inflamed, which = good.

So we are still looking at reflux or aspiration. They were really focused on aspiration yesterday because his lungs sounded bad and "the only thing that had changed" was the reintroduction of bottle feeding. But we continued to do bottle feeds until 10 this morning, and his lungs sounded better again today. (So perhaps they were sounding bad because of something having to do with this cold?) Just to give him a break and to make sure there isn't any aspiration while he is getting over this procedure, he got the NG tube put back in (on the second try, grr), but they will reassess in the morning. He is on oxygen and coughing a lot, but that is partly due to the bronchoscopy -- part of it involves flushing the lungs a little, which in the long run should be good, but for tonight is not great but was expected. We're weaning him off the oxygen again, but so far, so good.

I tried to talk with the doctor some today about how if we are still thinking it's one of those two things that I honestly think it must be reflux. Though his breathing rate wasn't noted by his doctor at his checkups, I have to believe that if he had fluid in his lungs, especially over and over again, it would have been noticed. He replied that sometimes babies at first have a major response and cough to clear it out, but after a while, their bodies get used to it, and so they don't cough to clear it. Which I'm sure makes sense in some cases, but Isaac doesn't cough very much. He really only started coughing with any sort of regularity when he got this cold last week. Anyway, we'll see what they say in the morning, but the good news is, everything is still coming back relatively normal.

We're hoping (I'm tired of saying "fingers crossed") that he will be doing well in the morning. We're told, too, they should have some culture results in the morning, the rest in a couple of days.

Thanks again for all the kind notes and sweet words of support and offers of help. We so so so appreciate it!