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.