keeping on keeping on

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

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

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!

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

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

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.