Lil Isaac

Some updates

2005-08-14T16:04:00.000-07:00

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

2005-08-03T23:43:00.000-07:00

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

2005-07-30T22:51:00.000-07:00

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!

2005-07-28T09:48:00.000-07:00

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!

2005-07-26T01:58:00.000-07:00

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

2005-07-23T02:19:00.000-07:00

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

2005-07-22T00:09:00.000-07:00

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

2005-07-20T12:57:00.000-07:00

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

2005-07-19T00:30:00.000-07:00

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

2005-07-18T01:02:00.000-07:00

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!

2005-07-16T01:36:00.000-07:00

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'

2005-07-13T16:26:00.000-07:00

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

2005-07-11T22:48:00.000-07:00

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

2005-07-10T20:51:00.000-07:00

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

2005-07-09T17:25:00.000-07:00

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

2005-07-08T14:32:00.000-07:00

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

2005-07-05T23:12:00.000-07:00

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

2005-07-05T00:57:00.000-07:00

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!

2005-07-02T23:35:00.000-07:00

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

2005-07-01T23:27:00.000-07:00

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.

keeping on keeping on

2005-06-30T17:22:00.000-07:00

we had a big ole conference meeting today with icu doctors, general practioner doctor, lung doctor, infectious disease doctor, chaplain, social workers, me and robert and his mother...

it seems like it's impossible to tell if isaac still has an infection. too bad, because i don't like the sounds of this antiviral medicine we're giving him. i'm really hoping he responds well to it.

his chest xray from this morning showed a little more air pockets, particularly in his right lung. this could be promising.

he's lost alot of his swelling... so he looks alot skinnier today. his ribs are quite visible... he's been sick over 2 weeks now and hasn't eaten all that much, so it makes sense.

they're feeding him formula through a ng tube that goes directly to his stomach (in addition to the iv nutrition bag). they'd prefer to feed him through his stomach instead of the iv because there's a higher risk of infection with the iv. our stomach's are sterile environments, plus the acidity makes for quite the hostile place for bacteria to grow. our bodies really do so much for us!!

he shakes and twitches quite abit. personally, i feel like this is good to see. i know he's such a vital little guy. when he's well, it is impossible to keep him still!

this weekend, they are going to give his lungs a try. c'mon lungs!! just a breath in, and a breath out. a breath in. and now... a breath out. and let's just do it over and over and over and over ... you get the picture.

holding steady

2005-06-29T01:18:00.000-07:00

isaac's doing ok on the ecmo. all his vital signs seem to be maintaining. today he was bleeding in a few spots and a couple of lumps appeared on his head and foot where they'd attempted iv's in the past. they have a lot of heperin in the blood which prevents it from clotting. they need to prevent clotting because otherwise the blood as it passed through the plastic tubes and the gizmo that oxygenates the blood would completely clot and clog up the machine. so the bad side to not clotting is that on isaac himself, they have to be completely careful to not cause him to bleed. they had to give him additional platelets to help him clot.

they're giving him an antiviral drug that might be effective against the adenovirus. i guess his cultures grew the virus in record time and in vast numbers; the lab had never seen anything like it. this adenovirus means business and everyone's guessing it's going strong, still. so hopefully this antiviral drug will kill it off and help save his lungs from any/further damage. the drug has had questionable success. they can't tell if it actually works. in some cases, it doesn't work. and others, patients end up with kidney problems. but what if it does work?!

it's an intense scene. the ecmo machine itself requires a fulltime nurse. isaac has a fulltime bedside nurse. and a respiratory therapist shows up from time to time. doctors continually drop by. people delivering drugs and blood drop by. the xray person shows up with their machine several times a day. this is intensive care. but i gotta say... the other rooms i walk by don't look nearly as busy as isaac's.

his bed's raised to about 5 feet high, you have to stand on a stepstool to see him. so i stand there at his head and i touch his head. i stick my finger underneath his. or i put my hand on his chest. i hope i'm doing something good for him.

we brought in some music which hopefully the nurses keep playing. he's getting some good bach, beethoven, brahms, schubert, and mozart in. i really love it when glenn gould's playing cause you can hear the joy in his playing as his music dances from the speakers to our ears...

oh, isaac! you are so my sweet sweet sweet of sweethearts.

ecmo

2005-06-26T18:05:00.000-07:00

isaac's lungs are failing. his oxygen saturations were in the 70s. his gas exchange (from oxygen to carbon dioxide) was getting poorer and poorer. so they put him on an ecmo, a device that oxygenates his blood and does the gas exchange in his blood for him. this will hopefully give isaac's lungs a chance to heal. and to eventually resume operation.

i'm not sure what else to say at this point except i'm doing everything in my power to give strength to that little boy. if you are reading this, maybe you will do the same.

thank you.

oh, the little guy!

2005-06-25T00:32:00.000-07:00

Oh my little Isaac...

Today, he's in the intensive care unit. He's been put onto a ventilator. They did a brochoscopy and it looks like there's some sort of seconday bacterial infection going on. He's pretty heavily sedated. And he's got a ton of monitors attached to him. Tubes going into his mouth, nose, penis, neck... It's intense, I guess that's why they call it intensive care. He's needing a ton of oxygen.

Anyway, I know my little guy's tough and full of spirit and won't take all this getting sick stuff sitting down. I just know it.

I love you, Isaac.

Still hospitaling it

2005-06-24T00:12:00.000-07:00

We get lots of doctors telling us what a special child Isaac is. Lots of doctors like to talk about Isaac because he's such a unique case. The best minds, the best doctors are all putting their best foot forward. *sigh*

We were supposed to come home today. But we didn't. One main reason is because I am sick with some strep like sore throat. I'm hoping hoping that the antibiotics work their magic. The second reason is he was needing a little too much oxygen. So hopefully, he'll have an easy night and morning and we shall see what transpires tomorrow.

He's on some exciting new drugs like steroids and this diuretic drug called lasix. plus he's still busting out fevers and we're giving him ibuprofen and tylenol. at least he's done with antibiotics. maybe that'll make his stomach feel better. poor boy!

Isaac's opening his eyes alot more. He stares quite abit with his mouth kinda dropped open. But he looks around abit, too. No smiling. His sounds are kind of a highpitched whine. And his coughs sound really highpitched, tough, and dry and less frequent. we are hoping that lasix is not drying and hardening things up in those lungs... He sits up some. Rocks back and forth and will practically fall asleep -- we gotta catch him.

Well, it's time me and the boy kick these sick things and get on with it, already!!!

sheesh.

Pneumonia

2005-06-19T22:59:00.000-07:00

ahhhhh, my little guy.

he's been in the hospital for the past 3 days now. and he's the most miserable i've ever seen him. he's got a viral pneumonia caused by an adenovirus, so there is nothing anyone can do but wait it out. and he caught it from me. for me the cold was a mere nuisance. i had mild low grade fevers with a pretty good sore throat. and then i was snotty for a few days. but for him... man, oh man. he started off with 104 degree fevers on monday and is still getting high fevers today. today he topped off at 103.3.

i sure am hoping for this thing to pass more quickly than later. go isaac go! you have that robust immune system, there... let's go!!!

i sure love and miss that little boy. he's been so sick that all he can do is sleep or cry. and so ... i guess i'm missing the healthy boy he was just 8 days ago.

da da da da da

2005-05-08T23:29:00.000-07:00

Hello!

It's been a couple of weeks since i have written last. Isaac's doing marvelously. He had a cold for a couple of weeks, all snotty. Fortunately it stayed out of his lungs. And he beat it just fine. And now he's eating more than ever. Breathing more easily than ever. As energetic as can be.

Last night he started to talk! "da da da da" Today we drove 5 hours from my parents' place. He slept for about an hour and talked all the rest. "da da da da da da" it was really cute. it's like he's another baby, now. occassionally he'd throw in one of his "mmmmm"s. accented by a good little shreak!

A few days ago, isaac awoke from a nap. my father picked him up. i think isaac was crying when he woke up. and my father put him down standing, isaac was still crying. i wasn't there to see it, but isaac was so busy crying he didn't notice he was standing all on his own. for a few seconds anyway. i wish i had seen it!

isaac's two top front teeth are coming in now. it looks like his right top front tooth may have just poked through the skin in the last day or so.

it's great to see this kid developing!! yay, isaac! thanks for making me your mama. :-)

Bye Bye Dr. Ochs

2005-04-23T00:55:00.000-07:00

About two and a half weeks ago, we made a quick trip to Seattle. Isaac was given a booster of the phage which translates to the bacteriaphage virus was injected into him again. Since Isaac already created antibodies to it the first time around, he should "remember" it and generate an even more robust antibody response to it the second time. We drew blood twice in the last two weeks.

And, the verdict is... Isaac generated a very healthy normal response to the booster. So, that's it. We've run out of tests that could possibly look for problems. Dr. Ochs says he'd like to hear how Isaac is doing a year from now. In a way, even though I liked Dr. Ochs, it is kind of nice to say good bye to a doctor.

Well, that was a fun path to go down, now wasn't it. Yay, it is confirmed Isaac has an immune system. Now, if only he'd just get over that cold. :-)

It seems like things are seriously beginning to relax around here. Time to concentrate on good times. Isaac's so much fun. Maybe I'll write about him and his loveable ways next. If you are lucky.

Pathology report is in

2005-04-07T15:44:00.000-07:00

dr nichols says he's only seen about 3 or 4 cases like Isaac in his entire career. i think he's around 50 years old?

here's the final diagnosis as made by claire langston at Baylor's down in Texas.

--------------
Lung, right middle and right lower lobes, wedge biopsies:
1. mild lymphocytic bronchiolitis
2. increased alveolar macrophages
3. mildly increased neuroendocrine cells in airways and mildly enlarged neuroepethelial bodies

There is no evidence of residual pneumocystis organisms. There is a very mild lymphocytic bronchiolitis without prominant structural airway changes. This could reflect resolving airway infection or possibly a subtle immune abnormality (note: supposedly leland fan disagreed with this point). The neuroendocrine cells are mildly increased in airways and neuroepithelial bodies are mildly enlarged, but the number of immunopositive cells and the pattern of immunopositivity is not that seen in neuroendocrine hyperplasia of infancy. We have seen a similar distribution of neuroendocrine cells in children recovering from viral infection and in a few children with mild chronic airway disease who have poorly defined immunologic abnormalities. The presence of increased alveolar macrophages suggests increased lung fluid and/or poor clearance secondary to proximal airway disease. Dr. Megan Dishop has also reviewed this case and agrees with the findings.

----------------

dr. nichols says isaac seems to exhibit mild symptoms of both an interstitial pneumonitis (the presence of excess lymphocytes and macrophages) and of persistent tachypnea of infancy (the presence of the neuroendocrine cells).

as far as treatment goes, it would seem that both dr. nichols and dr. fan are on the fence about giving isaac steroids. because his case is mild. so it is possible if that isaac gains significant weight -- he has been eating quite well as of late -- and his oxygen saturation continues to stay high that maybe he will just heal on his own. and that maybe by the time he was 5 years old or before everything would be cleared up.

persistent tachypnea?

2005-04-07T00:27:00.000-07:00

my scientist friend has access to all sorts of documents, and she sent me this one a while back but i only just read it tonight. anyway, the symptoms seem to fit what isaac might have. i don't know.

we have an appointment with dr. nichols tomorrow. i think he has received the results of the pathology work done by dr. langston at baylor's in texas. more on this after the appointment. wheee!

I call him lungs

2005-03-26T00:37:00.000-08:00

I also call him Slappy because he gets slap happy. Sometimes, I call him bootchie. I have no idea where that one came from.

Well, it's been nearly 12 days since he had his lung biopsy. Alls I can say is at least it's done. I'm not sure how revealing it will in the end. Ah poor li'l isaac to have gone through it. It really was a traumatic ordeal. But the boy's resiliant and is quickly getting back to good health.

Dr. Nichols says he has inflammation, extra cells, in the interstitia, the part of the lung that isn't the alveoli. And these extra cells "sluff off" (or collect) into the alveoli causing the crackling sound. Why there is inflammation, I have a feeling no one will ever know. We are waiting to hear back from Dr Claire Langston, a pathologist at Baylor College of Medicine in Texas. This lab specializes in examining for rare pediatric pulmonary disorders. Hopefully, by the end of next week they'll tell us what they know. Only to tell us, they don't know either...

I find myself thinking about the past four or five months. It's just been crazy, i tell you. crazy. on so many levels. dr. ochs says when considering isaac, it's a team effort. all the doctors must collaborate to decide what's best for him. i mean i know where he's coming from. but, at the end of the day, it's not. it's up to me and robert to decide what's best for isaac. we're his parents. i'm not sure what my point is. i'm still trying to figure out the best articulation... it's just that the doctors really don't know that much more than you or i.

ok, the baby wakes, now. adieu for now.

Optimistic Antibodies

2005-03-12T00:42:00.000-08:00

This time, when we sent blood up to Dr. Ochs' lab, they received it. Yes. Dr. Ochs left a message today saying the tests they ran looked completely normal for a baby his age. He is able to generate an appropriate antibody response to a foreign pathogen. Yay!

Since we didn't speak to him, we're a little unclear where this leaves us with continuing IVIG and prophylactic antibiotic treatment. I think he will still want us to get the booster -- where they re-introduce the virus into his bloodstream -- to see if his antibodies remember. I guess the idea is if they remember, they generate an attack to the foreign body much more quickly.

Well, so it's looking like it's just a lung thing. It's really good it's not both a lung and an immune system thing. Of course, the lung thing is no minor issue.

Isaac has his lung biopsy early monday morning. Fingers crossed, ladies and gentlemen! It will be nice to be past that point, let me tell you.

Meanwhile, Isaac's a scream. Literally. He has a bloodcurdling earshattering scream that leaves people a bit stunned. I _LOVE_ his vitality. :-) He's crawling all over the place. He loves bright colors. He loves his daddy. And his mama, too. Let's not forget Zoe the super dog.

Immunologically speaking

2005-03-08T15:24:00.000-08:00

ok, some updates here. two weeks ago we all drove up to seattle very very early one morning (5 am!) and had some blood drawn from isaac and infected him with a virus that is harmless to humans. they performed two tests on the drawn blood. the first test was to count isaac's white blood cells. they counted the various types of t cells. they counted the various proteins found on his t cells, like cd3, cd4, cd8, etc... i have no idea what all they are for or what they do. i know hiv folks pay attention to their cd4 levels, but that's all i know. obviuosly all these proteins are quite essential. they counted his hematocrit level which was a little high. he was slightly neutropenic but not such that it seemed to raise a lot of flags. all his other counts were very normal.

the rest of the blood drawn was used for what they call a functional test. in a test tube or some such device they would introduce pathogens to the blood and see how the b and t cells would respond. and, i guess, it all was normal. so that's very encouraging. this seems to rule out SCIDs (Severe Combined Immunodeficiency Disorder), a very terrible immune disorder. it is what the original bubble boy had.

and as far as the infection of the virus goes, well, we've drawn blood last week and this week. we are going to be sending up the blood to dr ochs this week to see how isaac is responding. as a background -- we've infected him a bacteriophage, a virus that attacks a variant of E.Coli. it was administered into him by IV. there should be no e.coli in his blood anyway. so the virus will just float around and get absorbed into isaac's system at worst. at best, the antibodies in isaac will recognize the foreign body and attack it. the weekly blood draws will indicate an immune response, i.e. his body will generate the necessary antibodies to kill it. at least this is my highlevel understanding.

meanwhile, pulmonogocially, we are meeting with a surgeon tomorrow to find out what all's entailed with a lung biopsy.

i've got a link to a document revised last year about the various chronic interstitial lung diseases of infancy that you should check out written by a very prominant peds pulmonologist named Leland Fan.

Second Opinion

2005-03-06T11:21:00.000-08:00

I wrote Edeana this week in an email (instead of rewriting this all over again):

we got an opinion from Dr Michael Wall of Doernbecher
children's hospital. he seems to think isaac's a "classic" (as
classic as you can get with an extremely rare condition) case of
chronic interstitial pneumonitis of infancy. he thinks isaac was born
with this, and that they'd completely misdiagnosed him at emanuel. he
suspects isaac's immune system is just fine. he says we need a lung
biopsy to be sure, however (about the pneumonitis, i mean). he says
there are only a handful of cases in oregon that appear a year (like 4 or 5). and
we need to treat him now, as opposed to later, to avoid lung scarring.
once the lung scars, there's nothing to be done. except perhaps a
lung transplant. so to fix him now, once the biopsy is complete and
labwork comes back confirming, we treat isaac with a huge dose of
steroids over several weeks, maybe months depending on how he
responds. yeah, most likely there'll be some side effects from the
steroids such as extra hair growth. perhaps some overall growth
slowing down -- but i think i'd prefer this to him having bad lungs
when he's older. i'd rather be short and able to hike a mountain than
tall and forced to sit all the time. i think the prognosis is good...
i'm a little unclear. i sure hope it is! and why does isaac have
this? well, that, i'm afraid, is a question we'll probably never know
the answer to.

this diagnosis feels a little more correct to me. mostly because
isaac's been breathing so fast his whole life. it says to me that
there was something wrong with this lungs from the start. also, isaac
really started to breathe nicely there towards the end of our first
stay in the hospital. more so than i have ever seen him. dr. wall
thought that instead of isaac responding to the antibiotic which was
given to him to treat the pcp, he was responding to the steroids (which had been given to him in conjunction with the antibiotic). and
i remember once he was off of them steroids, his breathing really took
a turn for the worse and he was still on the antibiotic...

it's interesting, isn't it? we have an appointment with a surgeon who
would be performing the biopsy next week. i think if this is really
what's wrong with isaac i'm very interested in treating him very very
soon.

in the meanwhile he's holding steady. and breathing as fast as can
be. he's crawling now. he's an energetic little feller... someone as
energetic as he needs those lungs!!!

Who needs answers

2005-02-16T18:40:00.000-08:00

ok, so a couple of updates.

regarding the CT scan from monday, the pulmonologist's nurse called saying that dr nichols would like to meet us and set up an appointment for another bronchosocopy. this does not entirely thrill me. i'm not sure what he's looking for. but i guess he will tell me this in the preceding appointment. it means, most likely, another IV put into him. i feel like for every IV, drug, or medicine that Isaac receives he is set back a little. his lungs were way louder yesterday, a day after the CT scan, than they are today.

regarding the blood that was sent up to dr ochs. yes, i think this guy's really brilliant in his field, but he and his lab seriously need to get their act together because they seem to lose blood. i am betting they misplaced my blood i gave them in november. and as for the blood that was drawn from isaac on february first, dr ochs had no idea about it; he was sure the nurse who drew the blood delivered it to the wrong lab. when i talked with the nurse she gave me the address and fedx tracking number which all went to dr ochs lab. go figure. i call him back up and talk to some lab guy who says, 'oh yes, we received his blood february the 2nd'. ok. great. dr ochs calls later to say that his lab didn't run that sort of test (the test that would do a count of the different type of lymphocyte cells). ok. great.

anyway, i guess the tentative plan is for us to go up to seattle on tuesday. take some blood, run some tests, and have isaac take a serum containing the benign virus which will demonstrate, hopefully, how functional his immune system really is.

and figure out what's going on with his lungs.

i swear, isaac's just gonna get better on his own without any of these doctor's help. that's my feeling.

CT scan

2005-02-15T13:17:00.000-08:00

Yesterday, Isaac underwent a CT scan. We hope to hear back the results today from Dr. Nichols. So here's where we are at thusly:

Two weeks ago we drew 5mls of blood and sent it up to the children's hospital in seattle to dr och's lab. we have yet to hear the results of these tests. my understanding is they are counting his Tcells with certain proteins like CD3, CD4, etc.. there were a whole swath of them dr ochs wanted to look at.

Last wednesday we visited with a pediatric cranio-sacral chiropractor. i thought she seemed quite good. she moved his skull bones around and that was kinda trippy. i could see isaac's eye become more or less squished as she moved the bone that makesup the forehead. she would touch him here and there along his spine, hips, scalp and sometimes he'd end up shuddering for about a minute as tension released from him. isaac didn't seem to mind too much. she also did a couple of adjustments on his back which left him screaming. i hope that those were not adverse...

Last Friday we visited with paul miller an osteopath in lake oswego. we visited with him for 3 hours. the first hour i gave him a complete history. and the next two he gave isaac gentle pressures here and there, along his hips, back, ribcage, shoulders, neck, scalp...he said isaac's legs were different lengths (not really, but that his hips were out of whack giving the effect that one leg's longer than the other) and that perhaps this was related to his diaphram tightening (making him grunt) and this was a result of his lung distress. or perhaps his hips and diaphram strangeness brought on the lung disease... hard to say, it's a chicken and egg problem. anyway, his approach is real gentle and he wants to work on isaac for a few weeks to see if he has an effect. so we're going to. we're not going to resume seeing the chiropractor until, maybe, after the work miller does. doesn't make sense to be seeing two different folks who are doing similar work. plus i feel like miller's approach is gentler.

well, hopefully we'll hear some informative news from dr ochs and dr nichols this week.

my dear little boy

2005-02-06T21:50:00.000-08:00

he's asleep on the pad surrounded by his toys. zoe's asleep behind the lazboy chair. i just wanted to list a few things i rather enjoy about my boy:

he loves to suck on tags -- you know, the sorts of tags you might find near the tail on a stuffed animal, or the inside collar of a shirt. he fingers them. and then he puts them in his mouth.
clear rubber tubing -- he goes gaga for these! 'course he's used to seeing them around for the past several months as these clear rubber tubings are used to give him supplemental oxygen and for my breast pump
he cries when robert blows his nose -- something about the noise scares him. and when i was making pesto in the electric chopper, tonight, he began to cry. it's a pretty loud noise. and his lips form the perfect little pout. you can't help but say, "ooh ooh, it's ok little boy, it's ok!"
sucking on my neck and cheeks. he does this when he's tired. i love it!
he gets so excited with any new toy you put before him. i'd love to have such enthusiasm.
zoe. he loves her. when she comes in the room, he hears her and stops what he's doing to give her a look. if he's in his jumperoo, he comes to a complete stop and stands at attention, and then he wiggles. and then he screams. a scream of delight, of course.

ok, that's enough for now.

pneumocystis

2005-02-06T21:05:00.000-08:00

they seemed to have changed the name from pneumocystis carinii to pneumocystis jirovecii. why? you can read it yourself here

so, i was hanging out at the CDC (center for disease control) website and thought i'd look up pneumocystis, just for a gas. well, some interesting articles popped up that caught my eye. in particular, one focusing on how common it is to find pneumocystis in normal healthy immunocompetent adults, and that perhaps it is spread from person to person. "Our findings may suggest that healthy adults represent a new dynamic reservoir and source of infection for human Pneumocystis species." There are other reports where patients in a hospital seem to have caught it from other patients. In this latter case the patients had undergone kidney transplants. More than likely these patients caught PCP because their immune system was supressed in order for the kidney transplant to take. The genetic strain of the PCP's found in these patients were all the same, suggesting that it can be transmitted from person to person....

why am i writing about this? well, hans ochs has questioned whether or not isaac really had PCP. i have yet to question the pulmonologist on how he made the diagnosis. is the presence of pneumocystis mean he's got PCP? or was it an overwhelming colony outbreak? i do not know. and wouldn't it be interesting if he caught it in the hospital? or perhaps from me? or anyone else?

the fact it can be passed from person to person doesn't really matter. i really do want to know, though, how the diagnosis was made. if he didn't really have PCP, then what did he have?

osteopathy

2005-01-29T18:34:00.000-08:00

today, isaac received an osteopathic treatment. it was interesting. my mother's cousin and his wife live up in tacoma, washington. they are both doctors. corinne, the wife, is an osteopath obgyn doctor. she recommended a DO (doctor of osteopathy) here in Portland. and she also mentioned she would be attending a retreat here in portland this weekend, and that maybe she could get us to come and have isaac evaluated. so she called this morning saying we could come over. i hopped in the car with omar and isaac and headed east on 84 to this retreat that overlooked the columbia river. it was gorgeous, even on a dour rainy day like today.

corinne and the doctor who she recommended we see (paul) listened to the isaac story. then corinne brought us into this really big room with big windows and a blazing fireplace. it was filled with massage tables. it was quiet and relaxing. felt like you could only talk in whispers. we laid isaac down on the table. she placed her hands on his back, between the ribs, behind his neck, the lower part of his scalp, the top of his head. she applied some pressure on his cheeks right above the jaw near his nose. he didn't seem to like that too much. whatever she was doing seemed very subtle. paul showed up and wrapped his hands around isaac's middle. another DO did something (and this was when isaac was sitting up) where touched isaac's solar plexus and his face and somehow that made isaac breathe easier. hey! now there was something! isaac's got some blockages.

the idea is he's experienced some trauma in his short life. the birth, because of the long labor, is considered traumatic. the intense uterine contractions ramming his skull down into my pelvis and squeezing/pushing his sacrum for well over 15 hours (i'm talking about the every 3 minute type contractions i had the night before he was born) probably is a good candidate for physical trauma. also, i think he's experienced a bit of trauma associated with the pneumonia, in terms of his lungs not fully recovering so far and his body having to adjust to his inability to breathe deeply. i'm not clear what sort of effects this has on him. but i think it makes his whole midriff pretty tight. for instance, paul attempted to raise isaac's arms above his head. it wasn't something isaac wanted to do and couldn't do easily. i remember before he was sick, isaac had the most endearing little stretch where he'd arch his back and stretch his arms over his head. and he hasn't done that in nearly 2 months. so perhaps his lung duress has caused his back and shoulders to tense up in some way... or maybe it's his diaphram that's contracted inwards... as you can see i don't quite know what i'm talking about.

what i like about osteopathy is it considers the body as a whole, especially in terms of fluidity. the idea is that the body can heal itself. but in order for this to happen, the fluid in your body needs to get to the places that are sick. and if you have blockages, then problems occur. i thought that this was an interesting website that describes osteopathy more at length: http://www.osteodoc.com/index.htm

we shall see what sort of long term effects this will have on isaac. but, so far, i appreciate the concept!

dr ochs

2005-01-22T15:44:00.000-08:00

This week we went to Seattle, and met with immunologist Dr. Hans Ochs. I liked him. He was a smaller fellow who has a very amiable way about him. He didn't seem like he was in a hurry or that he had to get down to business and be very serious. Instead, he had bright eyes which showed his genuine interest in immunology and in Isaac and in explaining what he felt was happening. He tells how it is. I'm glad he didn't talk down to us or anything... Also, I like him because he's not the bearer of bad news. Not yet, so far.

SO, Dr Ochs has told us there appears to be nothing unusual with Isaac's DNA. The strangeness he saw in the promoter region for the gene that tells the cell how to make CD40L, it turns out, appears in people with normal immune systems. Well, this was encouraging to hear as a defect in the DNA is pretty much set in stone, not too much hope of outgrowing a DNA defect.

ANYWAY, they drew some blood this week from both me and Isaac. They wanted to run this test that would that would see how much of this CD40L our T-cells were expressing. Remember, that CD40L is what allows T-cells to tell B-cells to make necessary antibody. Isaac's CD40L expression was 9% of normal when they tested his blood last November. Fifteen percent is the minimum amount needed to have an adequately functioning immune system. They were testing my blood to see how much I expressed. If it were around 50-70% then it might indicate that I have an X chromosome's not functioning properly. But I guess I was normal, which is somewhere between 90-100%. YAY!!! And Isaac's CD40L expression was somewhere near 35% of normal, which is WAAAAY above 9%.

SO YAY! Yay for Isaac. Yay for us. Yay for me in that it means if I have other kids, I wouldn't be passing an immune defect a long. But we're not out of the woods yet. We are still treating him as though he has some immune deficiency since we are not sure what's going on just yet. We will be testing other proteins expressed by his T-cells , making sure at least they are within a normal range. Then we will need to infect him with a benign virus (a virus that attacks bacteria) to see how his T and B cells interact. Meanwhile, we will continue to give him the synagis shots, the immunoglobulin infusion, and the antibiotic prophylaxis -- at least until he passes those other tests.

Well, what of the pneumocystis? what of his lungs? These are still questions to be answered. Dr. Ochs wondered if he had pneumonia caused by pneumocystis at all? He said the lab work only said that Isaac tested positive for pneumocystis, and that it didn't indicate how much was present in his lungs. Pneumocystis is everywhere, and at some point we all need to fight it off. It could be that Isaac did catch some virus which could have had some immune suppression side effects, and the pneumocystis was there taking advantage (it is an opportunistic type bug). It could be that Isaac's ability to generate this CD40L was just really immature. Dr. Ochs did mention cells found in cord blood express very little CD40L. And as a baby matures, he can express more and more. This coincides, too, with the fact it takes babies up to six months to be able to create all the antibodies they need on their own. And right around Isaac got sick with the urinary tract infection (2.5 months old) is supposedly when the antibodies he received from me during pregnancy begins to deplete (they are actually absorbed into his body) and when his body should start to generate his own. At this time, I've heard, is when babies are at their most vulnerable -- when he's not quite generating enough antibody, and doesn't have enough left over from mom.

So, bottom line, we don't know what the hell has happened to Isaac. And he could still have some immuno-deficiency. We are not sure. These tests will reveal much, I suspect. Infecting him with that benign virus will be the real test, I think. And I've a feeling he will be fine.

And in the meantime, we gotta get his lungs fixed. Hopefully, we can figure out what happened. Or, more importantly, he will just get better. And it won't really matter if we ever find out what happened. He is starting to eat more, which is very encouraging especially since we've been talking about getting a tube inserted directly into his stomach.

Well, I feel optimistic. Yay! Robert feels optimistic. Isaac's doing alright. He sits so well. And today, he moved from a sitting up position to a crawling position. He rocked back and forth a little. Then he sucked on my knee which was conveniently right there. And then he fell on his stomach. ehehe He's a little cutey-patooty. He even feels heavier to me. We might just have a practically healthy baby on our hands. c'mon Isaac's lungs!!

auld lang syne

2005-01-04T13:57:00.000-08:00

can you say that? anyway, happy new year to y'all!

our house is cleaner. robert and i seem to be getting on quite well. and isaac's sitting up!

i mean he's not a complete pro at sitting and he does manage to sit longer if he's propped up by his boppy pillow. but he really seems to love sitting alot especially when he's surrounded by all his toys. yeah, toys are now really interesting to him!

he's distracted by the world. it sure can be an interesting place for a little guy who's just opening his eyes. in fact, it can be quite difficult to feed him during the daytime just because he wants to play so much.

well, i've been wanting to resume breastfeeding again, and it's not been happening. he usually cries or turns away when i present him the boob. i'm not accustomed to such a response to my boobs, let me tell you!!! every other guy's always taken a great interest! i try to remind him of this, but he's not getting it. :-) he does seem to take it when he's tired, though, for a little bit. so i guess that's something. in the meantime, we just need to feed him by bottle with fortified breastmilk to keep him gaining weight, which we hope he is.... i don't think enough, but hopefully, some weight gain is occurring.

i spent the night at my Lily Pad last night all by my lonesome. it was AWESOME! nobody to contend with but me. no baby to worry about. wow, if only i could be like that all the time -- the not worrying part, i mean. i do feel quite abit more rested today. and that can be nothing but good.

robert's writing an arrangement for a pink martini song, and it sounds like it is going quite well. yay, robert!

oh, and isaac LOVES zoe!!! especially when robert is playing with her. he just laughs and laughs and laughs when zoe gets all excited to fetch something. it's awesome.

Happy Winter Solstice

2004-12-21T18:33:00.000-08:00

Hey all! Here's to hoping you are all healthy this winter. Drink them fluids and take your vites. :-)

So, lessee some updates:

1) We talked with Hans Ochs the seattle-based immunologist who has been looking into the underlying immune problems Isaac has. Here is the general gist:

the gene for producing the CD40 ligand (CD40L) seems to be intact; in fact, some of his T cells are able to express this CD40L. to review, his T cells need to be able to communicate to B cells to tell them to make different types of antibody. this communcation occurs because of the CD40L. when this protein is missing, the communication does not occur and the B cells never make those antibodies necessary for protection. this problem is called hyper IgM. the reason it is called hyper IgM is because B cells make a disproportionately large percentage of the IgM antibody compared to the other types (IgA, IgD, IgG, IgE). i think IgM does not require the T cell to tell the B cell to make it.
the promoter for this gene, however, seems to have a mutation. the promoter is a region on the DNA whose function may or may not (because i'm not entirely certain) is to turn on the gene. a doctor gave the analogy that it's kind of like a light switch. and Isaac's flickering. because he's able to express the CD40L sometimes. perhaps just not enough, right now, to properly defend himself.
there is one other case . and, no, i did not ask what happened to this other case. it is a question we have on our queue for when we talk to Dr. Ochs again.
sooooo, because this case is so unique... there may be a possibility he'll outgrow his immuno-deficiency ???? we just don't know.
they are testing my blood next to see if isaac inherited it from me. i guess he's not looked at my blood at all, and in fact, they may have misplaced it because they didnt' realize my last name was not Taylor. if i test positive, then they'll check Shell's, then Grandma's. If they have it, then my uncles and brother will be checked. and i'm not sure what exactly will be determined. only time will tell.

2) we met with the pulmonologist on friday. we discussed his rapid breathing, crackly lungs, etc... an xray was taken and it still looked cloudy but there were more clearer spots so that is a good sign. he said isaac's lungs were pretty expanded all the time. normally, your lungs expand when you inhale and relax when you exhale. well, his are inflamed and stretched out already. this accounts for his effort to breathe and high respitory rate. so we doubled his steroid intake. and we are giving him a steroid inhaler. already, it seems his breathing is easier. but it is still rapid.

3) today, i spent 7 hours at the hospital getting isaac set up with his second round of IVIG and synegis shot. IVIG is an infusion of antibodies that have been collected from a wide array of peoples' donated blood. supposedly he is quite well protected from lots of viruses, as protected as most adults. the synegis gives him live antibody meant specifically to protect him from the RSV virus. these shots and infusions need to be given monthly as his body will absorb the antibodies over time. and they are quite pricey, like over $1000 for each. our co-pay for these medicines is 20% and while that is a big break... well, it's still spendy.

today he weighed a bit less -- 14 lbs 2 ozs. he's been quite a finicky eater as of late. we're thinking maybe he has heartburn. so we're trying this anti-heartburn med to see if this has an effect.

i'm almost starting to think maybe we should let him be and let his body heal himself... but i just don't know. i guess for now we're staying the course the doctors have prescribed and so we shall see.

what else? isaac's sitting on my lap now. i think he likes my computer. his hands are exploring everywhere. really cool to see. his hands are cold, and i'm wondering why the heat's not on. i think this winter thing is really start to set in with its colder temperatures. i'm glad the days will start to get longer again. for isaac, until a day ago, the days have only been getting shorter.

oh what else??? i've written quite enough. this is it for now.

mama

2004-12-16T22:19:00.000-08:00

I gotta say, I think Sarah is a great mama. Her little heavy breather is one lucky boy. She seems to have infinite patience and limitless love. This new job of hers (the mothering one) is a far cry from the old days at CNET. Isaac's got a pretty far out papa too. Jeez, and he gets sung to by both of them. Why, I can feel the love from those three all the way down here in Bandon.

I'm glad to hear that Isaac is enjoying his jumperoo. He sure looked cute in it when he was down here even though his feet barely touched the ground. He's probably gotten quite proficient at jumperooing.

So come on little boy, make your mama and papa happy, and heal those lungs. We all love you mega much.

shell

heavy breather

2004-12-16T10:46:00.000-08:00

yeah, that's my boy. sometimes he tops 100 breaths a minute (avg for a baby is between 30 and 60). his breathing seems less intense when he's standing up. so it's a good thing mama-doodles got him his cool Jumperoo. his breathing definitely interferes with sleep and eating. but sure doesn't get in the way of his happy baby demeanor. when he eats, he has to take breaks to catch his breath. and i know he doesn't sleep as deeply. i can usually tell this by how much he's moved around in his crib. he moves alot when he's not sleeping as much.

he's sucking his thumb right now. he loves to spin and twist the little doohickies on the jumperoo. it's neat to see him starting to develop an interest in toys. he looks so intently at what i'm doing.

sometimes i get rather caught up in feeding him his 750 calories of food a day. this is no easy task as he tires easily and so feeding him 100ml every two hours can take a long time. and we never quite reach the goal. and i feel like i'm living the number game again. but he needs his food. and so long as he's gaining weight, i'm happy.

i feel like if his breathing would ease up, then he'd be able to nurse again. he'd sleep better... and well... it just would be better!!! so, isaac, if i've told you once, i've told you a million times, GET BETTER ALREADY!!!! :-)

Go Isaac, Go!

2004-12-14T16:26:00.000-08:00

Hello to all Isaac fans. I haven't seen the lad and his mom in over a month now but we (Sarah and I) talk a lot on the phone and I get to hear Isaac's many sounds, from coos to squeals, and I get a thrill every time (I also make strange noises back on speaker phone). We should be seeing Isaac and his folks and Omar in just another 10 days. Very much looking forward to that. Hopefully, Isaac will be even bigger and stronger and healthier by then. So, not much more to say except, "Go Isaac, Go!"

lots a love from Shell

tummy time

2004-12-14T12:48:00.000-08:00

hereslookingatyou
Originally uploaded by sarahswamps.

no big changes to report. he's still breathing hard and fast. but he's gaining weight. we checked in the hospital a week ago weighing 13 lb 8 oz. and yesterday isaac weighed 14 lb 8 oz. not bad!! a pound in a week.

i sure am loving this little guy. he always always has a smile.

Roll Over, Isaac

2004-12-09T13:27:00.000-08:00

Yes, Isaac had a turning moment, today. He rolled over from his belly to his back today several times. Sometimes he doesn't get it on the first try and he lets a shriek of frustration, but he tries again and succeeds. So far he's only rolled to the right.

Well, we've just returned from a two day stay at the hospital. We went because it seemed like Isaac wasn't eating as well and he was exerting a lot more effort to breathe. Isaac's working very hard these days. Working harder than George Bush, I would say. When he breastfeeds he breathes heavily about 5-10 times in between swallows. And his latch isn't always that strong. Fortunately, it is easier for him to eat from a bottle.

Anyway, we are home because we can support Isaac him as well as they can at the hospital. We have him on extra oxygen. He's been set up with a feeding tube for supplemental nighttime feeding. He needs as much sustenance as possible to fuel his labored breathing, his healing as well as his normal baby development. It's good to be home, I must say.

On the morning of our discharge I awoke with a stomach-ache which progressed into a nice debilitating bout of food poisoning. Yes, NEVER EAT HOSPITAL FOOD!!!!! I am all better, now.

Good bye!!!

2004-12-04T22:54:00.000-08:00

Roy and Edeana!
Grandparent kisses and hugs
We all miss you much!

(a haiku)

It was great to have them around, and today they are gone. And now, it's officially back to being on our own. We got the kitchen abit more organized. I'm in the process of setting up my Isaac files and getting all organized with that. And paying those dratted bills. You know how it goes...

ok, later!

Relaxing a bit

2004-12-04T01:58:00.000-08:00

Well...

Tomorrow, Robert's folks go home. It's really been great having them around. I can't seem able to convince them to stay. But, it's true they've got quite abit of a drive ahead of them. They've given me and Robert the chance to relax a little.

Really, it seems life is back to normal. Except for the fact that Isaac's got a canula stuck up his nose for the extra oxygen, you'd never know that we just spent 17 days in a hospital. He seems to be pinking up little by little. And he's eating alot! Thankfully. We figured out how to feed him some of his meds using a bottle and some organic formula I bought. I'm also throwing in some acidophilus for good measure. What with all these antibiotics and all. I'm eager to see some solid stool in his diaper! Solid as a breastfed baby can get, that is. So yeah, Isaac's taking to the bottle. I'm only giving him a little bit, 2 oz, so that he can still be up for some breast milk. It sure is whole lot easier than forcing medicine into his mouth with him hollaring and screaming and spitting it back out.

We still do not have a 100% diagnosis. I have inquired and received no response. hrmph! I sure do have a whole bunch of questions about this, one of the biggest ones I have is how protected from those viral, fungal, and bacterial antigens is he? How much of a functioning immune system does he have? And are they even testing for this? As I am writing this, I am realizing it's probably not good to be so kept in the dark. I think this week I needed to decompress abit. Next week, time to get on the ball.

What else is new? Well, Robert's reading and geeking out on the top chess games of 1993. It seems he'd stay up all night reading about these games. He gets all into it, trying to figure out what move each guy'd make. I've caught up on some sleep. Eating some better food. Trying to get back into a routine. I've thought about getting more organized, paying bills and exercising. But none of that has occurred, yet. Oh, and tomorrow, our new LaZBoy arrives. Yes, exciting.

Ok, more later!

Home from the hospital

2004-12-01T11:50:00.000-08:00

This house seems large and spacious after having spent 17 days cooped up in a hospital room. Well, we seem to have the distinction of having a very rare genetic condition affecting Isaac's immune system. An initial highly-accurate (90%) screening test has been performed on Isaac's blood determining he has something called X-linked Hyper IgM syndrome. Isaac's currently being treated as if has this syndrome. We will not have a 100% sure diagnosis for another few weeks, I'm suspecting. I have not been given an official ETA.

What is this hyper IgM syndrome, you ask? Well, a gene on the X chromosome is responsible for creating a protein called CD40L. This protein is responsible for your body's T-cells ability to tell your B-cells to make appropriate antibodies which help combat invading pathogens (these include viruses, bacteria, fungi, cancerous cells, etc...). With hyper IgM, the body is unable to make enough antibodies to adequately defend itself, the T-cells cannot bind with the B-cells to make all the necessary antibodies because of a lack of the CD40L protein. He has apparently inherited this from me. The reason I do not suffer from a lacking immune system is because I have two X chromosomes and one of my X's can generate this protein just fine. Unfortunately, Isaac got the bad X.

And how did this all come about? Why are we even suspecting problems with his immune system at all? Well, the pneumonia he came down with this past month was the raising of the red flag. He contracted something called Pneumacystis Carinii pneumonia (PCP). Pneumacystis is a fungus that is apparently everywhere and anyone with a normal immune system develops an immunity to it on their own. Only people whose immune systems that have been seriously compromised in a very major way contract the pneumonia. Usually those people have AIDS, undergone chemotherapy, or have some defect in their immune system.

What does this all mean? I dont' know! Right now, we are awaiting a 100% sure diagnosis. Then we will probably have all sorts of debates, deliberations, considerations, consultations, etc... In the meantime, I'm trying to take stock in the situation and appreciate this cute little baby I have as best I can. He is vastly improved and looks like he'll recover from this bout of pneumonia just fine.

That's it for now.

Yay Isaac's ureters!

2004-11-02T21:49:00.000-08:00

Good going being healthy Isaac. He seems to be a very hearty young lad. But I was very happy to hear the good news. Let's hope that was his one and only UTI. Good work Sarah and Robert for being as brave as Isaac.

I do hope, however, that we don't have to go through 4 more years with GWB - right now it looks very possible - yeech!

Come on blue votes keep on coming.

love you all,
shell

Isaac has good ureters

2004-11-02T17:00:00.000-08:00

Well, Isaac made it through the VCUG exam just fine. In fact, he very much impressed me. He only whimpered a couple of times and that was towards the end when he was getting tired of being in the same place too long. He didn't even flinch when they stuck the catheter in him. He sucked on my finger and looked at Robert. Isaac was in the zone. They filled his bladder with the dye and impressed the doctor with his bladder capacity. Anyway, the results from the test say that Isaac's quite normal, and does not have urinary reflux. Great news, I say! So that's done and done and done, and we don't have to go down this path again.

And I say, I much rather would have Bush in office once again than Isaac be un-well. So, here's to health!!!

One of my current joys with Isaac is when you stand him up, after he's been sitting awhile or nursing, he gets this amazed look on his face. His eyes brighten and his mouth looks like it might smile and he usually makes a very excited sound, "oooooooh"!

yes

2004-11-02T11:09:00.000-08:00

Yes he is a very cute little guy
even though he's kind of short
and drools a lot
he sure is a good singer
with his coos
and ahhhhs
and uhhs
and waaaaaaaaaAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHS
that's my little buddy
standing on my lap
resting his forhead against mine
smiling in his tiger suit...

kisses on Lil Isaac

2004-11-01T21:53:00.000-08:00

Okay all you Isaac fans out there, which one of you started this here blog? I mean, isn't he just the latest thing with his own blog 'n' all?

I'm hopin he and his mommy will come on down here and visit with us soon. I'm looking forward to seeing his drooly smile.

I was just reading about posting pics on here but it was a bit over my head. I might need some tutoring on that.

Well, that's all from here in Bandon Oregon on election eve with a Bach violin concerto playing and a toasty fire in the wood stove.

love to all Lil Isaac lovers,
Rachelle