Saturday, September 22, 2007

What's Now

Im sorry I havnt been able to personally respond to all your emails and comments yet. Hopefully I will have some time soon.

Since I last wrote he has battled pnemonia and won, had some serious problems breathing-wise due to an occluded chest tube, gotten mad enough to pull out the pic line embedded in his veins, and battled some unknown infection and won.

Thursday, he was my little Face again. He was making 2 year old jokes that were only comprehensible to him but made everyone laugh with his obvious delight at his own hilarity. He was talking and ordering me around with his little pointer finger. Juice. Ice. Bottle. Elmo. The little prince.

Friday morning he went in for a routine maintenance procedure to replace his pic line and switch out his faulty chest tube for one that worked. During his surgery, he suffered a massive stroke on the left side of his brain which has left his right side mostly immobile. It has taken his words. It has taken his ability to suck, the very first thing we learn how to do.

He is disoriented. He screams in frustration that his body no longer responds, that he cannot comunicate, that he cannot drink. In a way it is a relief because I see my sweet Face in there, fighting to break free of his weak body.

It is unworthy of him. He deserves the body of an athlete, an Adonis, instead of this weak helpless shell. He has begun using his left side (weak from previous strokes) to grasp, to hold, to protest.

When he panics, I soothe him. I am teaching him how to smite people since I have sadly neglected his cursing education thus far.

They say he is in the first stages and that he may regain some function in the next few days. I have promised him that if he drinks for me I will give him as much of my ice cream as he wants. I have promised that if he keeps fighting I will let him open and close the door, any door, as long as he wants without getting impatient.

Bargaining, one of the stages of grief.

My heart has broken so many times that it is a wonder to me that it keeps on beating. Sometimes it is a burden to me. I grieve, I grieve.

Yet I cant get too far down without some consideration of the awe that is Face. He doesnt know how to quit. His left side, slow and still these past three weeks, moves. Jerky, but moving. He fights and fights and has never shown a moment of weakness.

They tell me he has half a heart but he has more heart than anyone I have ever known.

I am privledged to have his back.

Tuesday, September 11, 2007


I dont know how to explain it but there is a look a very sick person has in their eyes that tells the story of their sickness. Not the look of pain - that's a different look. The look of sick.

Last week Jake had the look of sick. And the look of pain. The video was the best he felt all week, and it was all too brief.

Now he only has the look of pain. He has such a fire in his eyes that I gotta check to make sure I havnt spontaneously combusted.

He hates me. He is so well he has energy for hate.

I couldnt be happier.

Monday, September 10, 2007

The Good the Bad and the Boring

Im trying to stay positive and all your prayers and good wishes must be working cause I havnt lost it yet.

Here's the latest: the horrible neck infection is clearing up. Those creeping edges that were expanding onto his chest have receded until now it is only the hot red center in the fold of his neck.

His heart is doing great.

Yesterday, he actually laughed.

(In case this YouTube video of Face doesnt show up on the web you can view it by clicking the title of this post.)

He has definite stroke-like symptoms in his face and left arm. I believe it must be a new stroke, since his face has never been effected before. It makes his smile lopsided and hard for him to chew. His left arm is just - there. I'm sure both will respond well to therapy.

He developed a high fever last night which means some sort of infection which normally would not be too worrying except for... Deep breath... he is leaking too much fluid from his chest tube. My 10.4 kilogram baby is leaking 1500 ML a day - 3/4 of a 2 litre of diet coke. Only it's not diet coke, it's fluid (and tissue that sometimes clogs up the tube and looks like ewwwwwwwww). The real danger of the fluid is that it is taking along all his nutrients with it. If it doesnt slow soon he will starve to death, in a manner of speaking. So tomorrow, they are opening him up again to cauterize his thoracic duct.

As an aside, I have to tell you that everytime they say that to me a little voice in my head starts saying Duck? What duck? I love Groucho but it makes it hard to keep a straight face.

Ahem. So, first they are going to detour him into an MRI whilst he is sedated so they can view his cranium to see about stroke stuff. Then they are going to wheel him into the OR, spread his little ribs, puncture his little muscles and burn stuff. They say it really hurts. Afterwards, that is.

In between the great bouts of absolute terror are the other parts. The parts where it takes me 2 hours to get my hair combed because it takes so freaking long to get anything done. Like this -

Face needs to get changed. Get diaper, wipes, diaper cream (and every two hours the thermometer). Speak soothingly while putting the bed into a flat position. Clean off the disgusting, (temp here if needed) cream, new diaper, bed up. Get new chuck (a pad with plastic on the back for leaks). Lift baby and change chuck. Raise bed. Position baby, who is now irritable or sad. Give bottle. Sooth. It has now taken you 10 minutes to change 1 diaper.

If your not impressed by the 10 minute diaper, consider this. He gets a full workup every 4 hours - blood pressure, temp, pulses. All require hand holding and possibly singing. Medicine, endless medicine. Vancomyicin, 2 lasixs, digoxin, full IV fluid, xylicon, oxycodone, Tylenol, sodium chloride, sodium citrate, albumen, fresh frozen plasma. When it's by IV it means that when it's done a loud LOUD bell will ring. It's louder than the heart monitor alarms, a fact Ive never understood. When it's by mouth (about 12 a day, 4 times) it means facing the inevitable refusal, the sometimes choking, the unhappiness.

Then there is the twice daily blood sticks, the IV flushes which he shouldnt feel but does, the blood draws from his existing line which he shouldnt feel but does, the twice daily x-rays. The exams at least once a day from his neurologist, cardiologist, dermatologist, cardiac surgeon. None of which are concurrent.

Dont get me started on how long it takes to bathe a kid attached to so many tubes and lines. Before the bathing, miscellaneous glue removal (1/2 hour minimum). After bathing, full body cream with two different kinds of cream.

I also try to cream his body at least 2 other times a day because the air is so dry in here.

3 times a day his neck has to be fully cleaned and antibiotic cream applied. It's way less fun than it sounds.

The there is the constant food ordering fiasco. Im trying to stay in a good mood so Ill skip it. Trying to feed Face, who has a hard time chewing. In between meals all he wants is water ice. Constant water ice fed to him.

So thats my day. And night.

I try to get him out of bed as much as possible. At least into his carriage for a ride around the hospital. He can be off of his chest suction for 1/2 hour so that is our limit. (The rest of the stuff is attaches to the carriage if you were wondering). We make the most of it. It takes about as long to get him in and out of the carriage as it does to ride around the whole hospital.

I decided that I love the word perambulator. I have taken to calling the stroller that. It has the added bonus of making J crazy. You have to really like someone to be cooped up in such a small room for days on end. Sometimes we get on each other's nerves (perambulator) but we miss each other when we arnt together.

It's 2 AM and Im trying to remain positive but I have to admit to a teeny tiny bit of apprehension. They will come for Face in 4 hours to cart him off for yet another operation. I will cry again. I will stop crying. J and I will wander around as if we lost our keys until they call us to tell us he is in post-op.

Then we will start this crazy roller-coaster again.

I'll let you know how it goes.

Tuesday, September 04, 2007

Devestated in Philadelphia

I was trying to remain positive, to think myself through to the end. Handing him over to them AGAIN so he could be anethestized made me cry.

I havnt even mentioned that they think he may have had a small stroke because it hasnt effected him cognitivly and the rest is all just physical therapy, baby, more and more of the same. No, I shrugged off the stroke with just a slight bewilderment that my life has come to the point where I shrug off strokes.

But today, when someone finally came to look at his neck. It was The Straw. His neck is not brokendown. It is infected by the flesh-eating staph. On his neck. And just centimeters away from his freshly-cracked chest.

I am terrified. I want to curl in a little ball and cry all night. I want to find the nurse (and I know exactly which one it is) who did a really crappy job cleaning him. I want to hurt her. I want to hurt myself because I saw her do a crappy job and I didnt call her on it or have a fit.

The good news for today is that Face probably isnt in a lot of pain. He is so very badly dehydrated that he has been unresponsive for the past 8 hours.

I. Fucking. Hate. This. Goddamn. Place.

Monday, September 03, 2007

1000 Words About Why Face Wont Talk

Quick Update

Thank you all for your prayers, wishes and emails.

Jake's surgery went great. The usual ups and downs. His biggest problems now are that the skin around his neck is breaking down which means it's basically a big open sore that constantly weeps fluid. He looks like someone tried to hang him.

He has horrid veins and none left that werent blown or infiltrated so they are going to inset a pic line for him (A permanent line surgically implanted).

Normally these kids have plureul effusions (fluid in the cavity between the lungs and the "outside wall". Normally, these effusions are about 100 ML per day. Jake is effusing 1000 ML per day and yesterday they turned in Chylis, which means they are leaking fat like mad. So poor baby has to go on a NO FAT diet - not one miligram of fat. Hopefully this will close up the drain. The amount and kind tho means that we are probably looking at a several week stay.


The problem is one of gesalt - everything effects every other thing. His heavy chest drain means no fluid to his kidneys. They give his plasma so his kidneys wont shut down and he swells up in his extremeties. So vitamins, then dieuretics to flush the swelling which interferes with the chest draining, etc. A vicious circle.

The only analogy (if you havnt nodded off yet) is that they are giving him food and then making him throw it up and hoping that he got enough nutrition for those few minutes he could.

I guess I blocked it out but the Fontan kids always have an easily discipherable look. It says Fuuuuck You! My face wont talk to any of us at all. If you talk to him he will look at you and deliberatly look away. It's the only control he has over his life right now and sometimes my heart just breaks for him. Open neck wounds, a zipper chest, 2 chest drains, nasal canula and skin that looks as if we worked him over. There is not a vein site left without deep bruises.

I wasted all this time taking him fun places and I neglected his cursing education. I guess he'll have time to learn since we are stuck here FOREVER (mom whine).

The only good thing is that I am far from the only mom who wonders the halls in socks, showerless, hair wildly askew having technical conversations. Nice not to be the only freak.

Ill try to update when I can. Thanks so much for all your emails and comments!