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.

Extubation Nation

Welp, yesterday at 9AMish, Isaac had that dratted tube removed from his trachea. He has seemed so much more at ease since. Except when he'd cough. That would make him cry. His throat is supposed to be quite quite sore. So coughing, while good for them lungs, is painful.

But today he's supposed to try eating for the first time in weeks upon weeks.

I haven't been in yet to see him today. But yesterday it was fun to be able to stand and hold him. or to sit him up into a sitting position. he's quite floppy. he did manage to sit up a little and be really interested in the id bracelet that's around one of his ankles. that's my boy with his deep interest in all things tags.

OK, i'll write more later after i've seen him.

withdrawals and extubation

the boy's going through classic withdrawal symptoms now... for me it's enough to know he'll be through it in a week or two, so watching him suffer, while no fun to see, doesn't bother me too much. yeah, he's not too happy right now. shaking. eyes dilated. he did some puking tonight and dry heaves. and he just gets really unhappy.

well, tomorrow (i realize this is already tomorrow) (tuesday) he has scheduled at 8am the official extubation -- where they take out the ventillator. he has been breathing all day on his own. his o2 sats have been very good. his heartrate overall is low (120ish). it seems to increase (up to 180!) when the withdrawal symptoms are at their worst which i guess is when he's in need of a fix.

they found a bacteria in his lungs today and started a course of antibiotics. he hasn't really shown too much in the way of symptoms except maybe for some extra sneezing, coughing, and extra phlegm. we uh... hope that sucker is nipped in the bud. last thing we need is another pneumonia. having a tube which is all warm and moist (perfect for little single celled creatures to plunk down a community) down his throat is a direct access for bugs to get into isaac's lungs. unfortunately, this is a lame side-effect of having any tube or iv or whatever other type of entry point into your body.

last year in this time, i was overtly large with baby... i'd tested negative for this group b strep (which i'd tested positive b4 i was pregnant from a bladder infection), so that was a relief! because i didn't want my baby to get antibiotics into his precious pure system!! and i think about all the stuff he's been through this past year... how pointless of it was for me to have even worried he might get a little antibiotic in him. yeesh.

it just shows to go you. worrying, even though it seems hard to help, sure is pointless.

ok, isaac, i bid you a sweet goodnight.

gas pains

poor boy's large intestine is filled with air. you can practically watch his stomach rise. it makes him really uncomfortable at times. but it's really great to hear him fart and make all those noises, because you just gotta know that it's making him feel a whole lot better. i hope.

supposedly the tube's coming out on tuesday if all goes well. i guess he's mostly been breathing all on his own today, but at some point he musta took a break as the machine did most of the work for a spell. the staff figures isaac got a little tired.

they've taken him off of the versed and fentanyl. at least the iv drips are done. isaac is still receiving doses here and there if he shows signs of withdrawals. and he's on the ativan (which replaces the versed) and methadone (replacing the fentanyl). these drugs don't make him high like the others but it binds to the same receptors as the others do -- this is to satisfy his body's dependence on those former drugs. and for the next 11 days or so they wean the new drugs. and then he should be done with all that.

he laughs readily except when his abdomen becomes uncomfortably taut with air. then he cries. poor boy. his movements are still abit jerky but he's grabbing onto objects now.

robert has found juggling and dropping the objects onto the floor and crying outloud "oops!" to cause isaac to laugh lots and lots. we like a laughing isaac. oh yeah.... isaac means Laughter.

as per usual... i'm quite proud of that little boy!!

Laughin!

OK, a real quick note.

Robert had Isaac laughing for over an hour today. I guess the nurses were able to suck lots of good stuff from his lungs today during this laughing session. I brought in a toy and he was grabbing at it pretty good with his adorable intent expression on his face.

The docs have been lowering the amount of ventillator support quite abit. There's even a possibility that his tube could come out tomorrow (Sat.). But WE SHALL SEE. It could be a few more days, too.

Yeah, it was awesome to see isaac so awake and in such high spirits!

OK, over'n'out for now.

Smilin'

Yeah, I caught him smiling today. The docs are giving him less sedation because they believe it might have been interfering with his innate drive to breathe on his own. So as a result he's the most alert I have seen him since before he got really sick. His eyes were looking all around. They still have that completely stoned look. But hey, he's still on enough drugs to knock a sober adult completely out. He definitely was responding to his environment and that was really fun to see.

I called the nurse a few moments ago and she said he threw up today. Perhaps he got a little motion sickness, who knows... maybe the stress of being conscious got to him.

Anyway, the goal now is to get him to breathe on his own. The settings on the vent are way down, low enough for him to be off. The vent is on a support setting which will allow him to breathe should he want to. And of course, we want him to. Duh!!! So that's what we're waiting for. There's this screen on the ventillator that shows this graph that indicates who's doing the breathing. It shows black when the vent does the breathing, and grey if Isaac is breathing.

So that's where we are at. i have a feeling isaac might need to get used to being conscious. what a concept. i suppose that could be applied to most of us...... but that's completely off-topic, now isn't it???

righto... that's it for now. as per usual... this mama's cheering her boy on.

Four weeks

Yeah, it's been four weeks since he came down with the virus. And when you look at him, you sure can tell. He's got no butt, now. You can see his hip bones. and his skin on his legs are all loose cause all his baby fat got used up. when he was on the ecmo, they were barely feeding him -- maybe 12 ozs of formula a day -- at a level the staff referred to as survival mode. now they're feeding him about 30 ozs a day.

Isaac's been consistently doing better. The peeps are down to 5. His O2 is at 30%. I was thinking, "oh boy in a day or 2, maybe we can get that kid off the ventillator!" so I asked the doc how much longer he thought... and he said he didn't want to have to put the ventillator back in once it was out so they want to be sure he'll stay off. and he also felt that isaac was still quite weak and wanted to build up those muscles required for breathing (which had been made weaker with the paralytic medicine he's been on and i believe he may be completely off of now).

they're starting the drug weaning process very slowly since he still needs sedation. they are doing this by spacing out the doses further and by giving him a little bit less. i imagine once he's off of the ventillator they'll start the weaning more in earnest.

ok, then. have i ever mentioned how proud i am of that little boy named Isaac Maxwell Taylor? He's doing most excellent healing work, that one.

Seeing Isaac

Yeah, he's had his eyes open a bunch today. I am pretty sure he can see me. It's great to be able to hold him again. One of these days it will be great to hear his voice once again.

His O2 sats were looking really good at 97%. He's at 6 peeps and 35% oxygen. so not too bad at all.

Oh, and they've been trying to grow the adenovirus and it's been like 7 or 9 days since they've been able to grow it. methinks he's done with that bug once and for all.

We like progress. :-)

Steady as he goes

Today I got to hold him for the first time in two weeks and two days. yeah. he seemed content and he had that look he has when he's asleep on my lap -- the look that says 'you are mine and i am sleeping here'. a look i happen to love very much.

And he even opened his eyes a little today! I wonder if he could see me. or i looked blurry. or what... he was flailing his arms some, too. the nurse said he was pulling at his tubing and such. I've always loved that kid's vim and vigor.

They swapped ventillators today. I asked the RT technician what the differences were. She said, "This new one has a computer on it. It can display an overall trend. It has some features the other one doesn't have. It's different. It has a different flow. It's just a different ventillator." Ok...

Not much to report. The doc has a hunch isaac'll be off the ventillator sometime next week.

We are very much enjoying the steady progress. Go Isaac!! Rooting for ya.

Two weeks down under

Yeah, it's two weeks today he's been in ICU and completely sedated. I always feel like Isaac's just swimming below the surface. I don't quite know how to put into words what I mean... It's like I know he's there but he's just not immediately available for comment.

ANYWAY! Isaac seems to be showing steady improvement. He's still on the ventillator. The docs seem intent on keeping him on it until the amount of O2 he needs is in the 30 percentage range and the amount of pressure the ventillator keeps his lungs at is down to 3 or 4 peeps. I have no idea what a peep is but it has to do with pressure in his lungs after/as he exhales. He is currently at 50% O2 and 8 peeps. So we have a ways to go.

They are reducing his peeps by one a day. And he's tolerating quite well. They're upping his nutritional/caloric intake. And removing all of the heart drugs. They're starting the narcotic-weaning process, now.

Today, I stuck my finger in his hand which seemed to wake him up. He was wiggling all around. his eyebrows raise up and down. his tongue moves in and out. he opens his mouth. his eyes are closed all the while. you can just tell he's itching to be free of the sedation and get to crawling or walking or something!!

He has this massive bruise on the right side of his head which is turning these incredible browns, greens, and yellow colors. this bruise is the result of a clot bursting and his inability to clot (because of the anti-clotting medicine he had to take while on the ecmo). it looks more like i'm a really bad parent and that he received a huge wallop to the head. the swelling has gone down tremendously as well -- so he's looking less and less like the kid with the football shaped head on that "Family Guy" cartoon.

When I think of that little guy I call my son, I sure get the warm fuzzies. I'm proud of my strong little son. Go Isaac!

One hurdle down umpteen more to go

ok! the coming off of ecmo went pretty smooth.

there was some business about his heart not pumping enough fluid, so they had to give him a whole bunch, but then that made his lungs get a little worse, temporarily anyway. and then he was bleeding quite a bit in the spot where they removed the canulas that connected him to the ecmo. he was still not able to clot completely on his own because of that heperin (anti-clotting) medicine had not worked its way out of his system... all this stuff.

BUT! he seems to be doing pretty well, now. he stopped bleeding. his lungs seem to be looking even better. he's on 45% O2 (we're normally on 20% oxygen breathing air) on the ventillator. he's getting this nitric oxide blown into his lungs which dilates his airways. the nurse said it would be really nice to get him off of this stuff. then to get off of the ventillator. then to wake him up.....

one step (hurdle) at a time. so here we are: off of the ECMO!

phew.

next, please.

i'm so proud of my little boy. keep up the good work. :-)

no mo ecmo

today (july 4th) the doctor decided to see how isaac would do if we took him off of the ecmo machine for 15 minutes. well, isaac did very well, indeed. his sat levels were quite high (98%) and they set the ventillator settings to 50% O2 and 50% air. when he got into icu initially he could never get past 92% saturation with 100% O2. so his lungs seem to be doing much better now that they've had some time to rest. yay.

the doctor seemed concerned about his heart as the ekg's were exhibiting some irregularities, and did an echo (an ultrasound of his heart) to see what was going on. he feared that maybe the adenovirus was attacking the heart. but FORTUNATELY, it was not. rather, his heart was reacting to the ecmo and was doing so by getting bigger. yeah, his heart's getting much stronger i guess. the downside of the heart's muscle becoming larger is the ventricles actually get smaller and therefore there's less blood to push to the rest of the body. i guess this is a problem? maybe not a huge problem but an incentive to get isaac off of the ecmo, just the same. especially since his lungs seem to be much better. more especially since there seems to be no more benefit of him being on it.

so tomorrow morning (tues morning), they're taking him off of the ecmo gizmo.

we're not sure how long isaac will be on the ventillator. but while he's on he will still have to be sedated.

what with all the sedatives and morphine he's been on the past week and a half, the doc's are saying he's quite addicted and will require methadone to wean himself of his habits... habits. yeah. like he had a choice.

ok, then. i'm sure i'm forgetting lots of salient details here... but i'm gonna end this entry now. you get what you get. lucky you.

and isaac, keep up the good work. you lovely little boy, you.

go lungs!

this morning they showed me his xray. and his right side was showing lots more black. and his left side, too. enough so that they're reducing the flow from the ecmo -- meaning they're giving more for his lungs to do. i could hear air flow through his lungs. i see his chest rise and fall some, now. this all seems positive. the docs are talking about maybe getting him off of the ecmo by monday?

tomorrow ought to give some clearer indications on what they'll do monday.

keep up the good work, dear boy.

have a heart

today, isaac's heart began to exhibit some signs of a little duress. nothing to be alarmed about, i guess. but it's just behaving differently, causing his blood pressure to go up some, and they're keeping an eye on it. the nurse assured me that it was a good sign he was peeing alot, he was digesting the food they're giving him as those are systems that shut down when things are going wrong.

anyway, we're in this holding pattern for a bit. it's kinda wierd -- i feel sorta like the single unattached person i was a little over 2 years ago... it's something i've done for years and it feels almost normal.

but this blog's about isaac. not me!

i am always glad to walk into his room and see the nurses bored. or just chatting about mundane topics, like what their child did that day. i always wish them a boring evening when i leave.

i'm rooting for you, isaac, my sweet sweet sweetheart of a son.