Some updates

Lessee, currently Isaac's feeding tube is out. But that's because he's thrown it up out twice. He's had some digestive issues this week. Some throwing up, some diahhrea and a nasty diaper rash.

He had his barium swallow study on friday. he still silently aspirates on thin liquids -- liquids like water, apple juice, and the like. but he did will on all the others. he doesn't seem to chew properly either. so now that the feeding tube's out, we're gonna be just feeding him thick liquids and mashed up foods.

And we'll see how that goes. His not being able to swallow liquids properly sure does make things a little challenging. But hey, that's our Isaac. :-) But we're gonna try to nourish him without the tube. Wish us luck! He seems to really enjoy the rice thickened water i've been giving him today! Until his stomach settles down, that's what i've been giving him to stay hydrated.

Well, he's currently in the midst of a 2 hour nap. how sweet is that??

Little boy

Isaac is doing well!

You can watch him get progressively stronger each day. We can feel him get progressively heavier each day. And we can hear his voice a little bit more, too. He's still pretty mute, but there's these high pitched sighing noises he can make. Hey, it's a start. He's crawling everywhere, now. Not quite as fast or as energetic. But jeez... i think he's doing fantastically.

The doctor visits have commenced. We've taken him to an osteopath and we're seeing him again later on this week to get some cranial-sacral treatments. We took him to an accupuncturist who was very good with him. She was working on his lungs and immune system and wants to see him for 14 weeks. We took him to his regular doc. Next week we'll go see the pulmonologist and have a barium swallow study done.

I think he likes his new home! Lots of trees for him to hear breezes. I've kinda forgotten how prepared a mother needs to be when she goes out with her baby. It's a little desperate when you realize you really need to change his diaper.

It sure is fun to be his mom, again!

Home sweet home

Though, it's a new home for him... but Isaac is, indeed, home as of last night. Six weeks to the day.

He's got new teeth, don't you know. Two new upper teeth. And his two front teeth are bigger. And so i'm still getting used to his toothy smile. I've got lots of opportunity, this kid's so happy!! He's happy to sit. He's happy to lay there. He's happy to go for a walk (in my little kiddie backpack). He's just gotta be so happy he's no longer going through withdrawals, no longer sick, and no longer in that hospital.

He did get pissed at me when i put him to bed tonight. this is so isaac. and he even pulled himself to a standing position several times crying. maybe the secret is to get him mad and he'll start walking.

It's strange to feed him, now. Filling up these syringes with this complete liquid nutrition stuff made by nestle, and then attaching it to his feeding tube and pushing it in. Somehow takes all the fun and joy out of eating. But i know this is a temporary thing. i'm looking into other foods to feed him -- stuff maybe a bit more organic and healthy. this stuff's loaded with sugar and "frationated" oils... and what in sam-hill is "fractionated"??? anybody?? sounds worse than partionally hydrogenated...

But the boy's crawling around. Not a whole lot. He just hasn't a whole lot of energy yet.

And the boy's home. YAY!!!

Happy First Birthday!

Yup, a year ago now this little guy was taking in his first breaths and his first swallows and his first sights of the world. Yay Isaac!! You made it through your first year. I'm cheering!!!

So, the hospital is talking about releasing the boy tomorrow. But we shall see -- it is dependent on how well Isaac does of course.

Some new developments: he's got an NG (nasogastric) feeding tube in right now and is not taking any foods orally at all. They discovered he does this thing called "silent aspiration". This means that sometimes when he drinks he inhales fluid straight into his lungs without any sign at all. He does not choke, cough, sputter or have any other reflexive reaction that normally occurs when food goes down the wrong pipe. In the barium swallow test, he just continued to drink as though nothing were happening.

I guess the thought is it is a side-effect of having the ventilator in him for so long. And that probably means sensation will return in his trachea once again at some point? I'm not sure... I guess time will tell.

Hopefully, this will avoid aspiration completely (there's still a chance if he refluxes) and his lungs will heal faster. we just can't have formula going into those lungs, you know???

there's been talk that perhaps it was aspiration that landed him in the ICU in the first place. as usual nothing conclusive -- except that he does aspirate for sure. at least, at this time.

he crawled for the first time yesterday, just a couple of steps. he even sat up from the crawling position. and went back into a crawling position and then fell on his face. and then he was exhausted. i think sometimes i don't appreciate how weak he had become.

OK, it's time to go celebrate with the birthday boy!!

Avocado!

Tonight, Isaac ate a half of an avocado. woo hoo. he seemed pretty delighted in picking up the slimy little pieces with his hands. it's such a great calory-rich food.

i think he's doing pretty well. i dont' think he's working quite as hard to breathe. he has enough energy to get pissed off at the nurses for sticking things on him, in him, about him. i like that. he can roll over now, and he can stay sitting up for a long time. he can't yet sit up on his own from a laying down position. and he doesn't seem to want to stand on his legs at all even with lots of support. and his voice is still muted.

tomorrow they're doing a CT scan and they want to do a barium swallow as well. it's just my opinion but i'm skepitical of the usefulness of the latter test. but i guess they want to do it so they can see how isaac's eating and to see if he's aspirating any. i've been objecting to the therapists and resident doctors who all explain to me the purpose and gently acknowledge what i'm saying ("oh yes, i hear what you are saying, and you are just so right to speak up" blah blah )... and i gotta say i find it a little frustrating. it seems to me that the mucos in his throat gathers when he eats is because he's being given milk-based drinks! anyway, i guess we'll see what happens.

i met a woman today who is here in portland to visit her 26 year old son whose heart stopped 2 or 3 times on the way to the hospital after a motorcycle accident. she said no matter if the kid's 1 or 26 these situations sure are intense. no doubt. it was sorta interesting relating to another woman in this way.

well, ok, then. onward and upward. as a man most dear to my heart says quite often: the best is yet to come.

:-)

Helping hands

Tonight, at the hospital... Isaac was being tended to by a really nice nurse and a respiratory therapist (RT). the RT guy was doing his thing -- giving him albuteril, CPAP. and the nurse was being really kind and giving isaac a massage -- she wanted to put this moisturizing lotion on him. and they were saying such nice things to him. I dunno... it just got me a bit teary-eyed thinking about all the people at the hospital rooting for him, working with him, thinking about him... I couldn't even begin to count the number of folks involved in the process of saving Isaac's life. Not to mention all the people not directly involved who were thinking about him.

After the nurse and RT left, Isaac was just laying there very relaxed. I walked up and he smiled. I didn't even have to make him laugh. I think he might have been happy he'd just hocked up a big loogy. We all were -- any way we can get that mucos out of his airways, the bETTER! I dunno, he might have been smiling because he was feeling the love.


He tuckers out pretty easily, and maybe that had something to do with a little scare this morning... his oxygen need had gone from less than a liter to three. robert called me and said isaac was having a tough time. it almost felt like 4 weeks ago when he first went into ICU. but i dunno... isaac resolved it in a short time... and he's down to .5 liters of O2. and smiling and laughing like a champ.

like a champ... man, i must be tired!!! :-)

lez go, Isaac!

Say hello, Ward

Yes, Isaac is officially out of PICU and now we're in the ward with the rest of 'em. Who are them? I have no idea... but it's one step closer to the general population, it feels like.

I think Isaac's doing really well! He's 3/4 - 1 liter of air and satting in the high 90's. that bacteria they found on monday turned out to be a hoax -- it was just part of our flora, or something.

So he's only hooked up to oxygen. he's still getting a few of his meds through IV like the steroids. i think he's getting all his others orally.

he eats like a champ. he WANTS that bottle. we can't give it to him fast enough. i hope we're feeding him enough! he gets great burps afterwards.

he's pretty silent, still. but i thought i heard a small peep out of him tonight. the nurses say they'll listen for him and i have to explain that they will never hear him, even if he's sobbing his brains out.

he smiles pretty readily. he is loving to get his hands on things especially blank id bracelets. he will finger and suck on those for hours.

he sat up a bit today albiet wobbly needing some support at his hips. he's holding his head steadier. he's really pretty weak, though, and his a long ways. but it's fun to hold up an id bracelet, wave it front of him, and his arms lurch out to grab, and i move it just beyond his reach... and he reaches...

i'm starting to feel like my boy's coming back!! yay. it's sure been awhile.