Adventures in Freelance Insanity ----------------------------------------------------------------------------------------- More TV & Stuff So it's a given that I watch too much tv, but frankly, holding a baby while he sleeps is not all the excitement it's cracked up to be. So Ive been TiVoing documentries (Im a sucker for documentaries) in between re-reading some of my favorite books. So here's my documentry reviews: The Yes Men Paper Clips Im in the middle of watching 3 others, about a black activist, about Mr. Zinn, and one about Physics that's interesting. *************************************** My fund-raising season has started again so Im about to get really busy. Im hoping this will be my last year, as I intend to change my job situation this year. I will never understand why healthcare sucks so bad in this country other than pure greed. This hodge-podge mess we have masquerading as health care policy is a joke. *************************************** Jake is finally starting to feel better and get into a routine. His scar is healed. I think he's amazing. I know that I dont want to smile after the last 6 months and the last six months is all he knows. But that kid has the biggest, widest smile in the world. He finlly got to take a real bath and he tried to swim away, it's all I could do to hold onto him. He amazes me every single day. *************************************** Thanks to all of you who jumped in to defend me on my last post. Of course I obsessed for days, worried that I had hurt someone's feelings but unable to even know who that was due to the whole "anonymous" aspect of the comment. Ah, well. Nothing I can do. *************************************** Have a wonderful weekend everyone!!!! 8:43 a.m. - 2006-02-03 ----------------------------------------------------------------------------------------- I Deleted A Comment I deleted a comment because the (anonymous, of course) commenter named the hospital that I called BHOE (Best Hospital on Earth) in my rant, perhaps not understanding that I know the name and chose not to use it. So here is his comment, with my insertion of BHOE in place of the hospital name -
Here's my response: In case it wasn't clear in my post, I don't hate BHOE an iota as much as I hate the necessity of being there. I doubt there is anyone who loves being in the hospital unless perhaps it's the people who work there. Ironically, the post came from the hospital itself and chances are it got there because I brought up pictures of Jake to show a nurse (at her request). Although I clicked off, I knew she could find them again and scroll through to see the things I had written but I was hoping she wouldnt. So much for being nice. In case the nature of a blog is not clear to the author, then let me use an example. The social worker I mentioned - you know as well as I do that her appearance is, um, different. I actually put her in my post because J is terrified of her and will literally run away if he sees her coming, which I tease him about constantly. I know for a fact that she is a dedicated, caring person, excellent at her job. That is not in the post because it is a rant, not a letter to her or the hospital or anyone who may know her, or a serious collection of my thoughts about the hospital. I hope that addressed your concern. 3:05 p.m. - 2006-01-26 ----------------------------------------------------------------------------------------- 24 Hours in the ICU It's 4 PM and Jake hasn't had any morphine for 14 hours which means his pain is better or he's better at dealing with it. He is eating again after 2 days of refusing food. The surgery puts his body and lungs into a kind of shock - not used to so much blood flow, the blood "backs up", making his bottom half normal baby with a visible line of demarcation on his chest. Above the line he is the child that ate the blueberry candy in Willie Wonka's factory, face 5x it's normal size and bright blue. He hasnt been adjusting as well lung-wise, but he was a preemie and every child is different. He has pleural effusions, as expected - water in the cavity between lungs and ribcage, making it harder for his lungs to expand. He is given multiple diruetics to help the water drain, and X-rays every six hours to check his progress. He is sat-ing in the 70s, unexpected after his post-op low 90 sats. His eyes are disjointed from morphine, pointing two different directions at once. It's 4 PM, and he is looking at a speedy recovery, maybe even discharge in 2 days. At 4, they X-ray his lungs and discover that a tiny hole appeared in his lungs, probably from crying, causing a numo-thorax - air between his lungs and ribcage. His left lung cannot expand at all. I watch with a sinking heart as doctors mobolize in his room, breaking open sterile boxes filled with gleaming instruments. Shiny scissors, needles, scalpels and syringes all laid in a row on blue paper. My eyes are caught by the sheen of metal as they explain to me they will need to perform this minor surgery, possible risks include lung puncture, blah blah... his voice fades as I nod in time. It doesnt matter, I'm signing the paper and trusting you will save him. The instruments are so shiny. I wait outside his room for 22 minutes. They inject him with ketamine, puncture his skin with a needle to thread a tube. Instantly, air escapes and he sats at 96 - a new high for him. They lay a tube gently in the hole, allowing blood and water to drain into a plastic box that sucks slowly at his chest. They tape him up, turn out the lights and let me back in to stroke his head, his little form limp with drugs and the sound of bubbling from his new chest pump. It's 4:40. At 5:30, despite heavy drugs, Jake begins screaming in agony. The nurse attempts to inject him with morphine IV and cannot. When he snaps on the lights, we see Jake, bright red and covered in big welts. He is reacting to the ketamine badly but no one noticed until now. He screams in pain but he can't get pain meds because his IV is now no good in his welt-covered leg. They rush to get him codiene that they can shoot sraight into his mouth while his little body writhes in agony. It's 6:30. The codiene takes effect after a while. He slumps, wide-eyed and drugged to the gills, red-skinned and welted, tubed and be-wired. They poke him for the millionth time to give him a new IV in a brand new place. They are running out of veins. His eyes are still looking strange though they should be okay by now. It's 7:30. He sleeps and sleeps, broken by wild bouts of crying as his skin slowly returns to normal. I watch his monitor in awe - it is the first and last time I will ever see him sat at 100%. It's 3 PM the next day. His body has finally adjusted to it's new blood flow, he is pink-covered all over. They will take his chest tube out as soon as the surgeon is free. For the first time in months he has no extra oxygen at all. His hand reaches reflecivly for a tube that is no longer there. He is sat-ing, sans oxygen, in the high 80s, low 90s. He eats like it's going out of style. He smiles at the sight of me, arms and legs spazing in the baby version of joy. It is a mystery to me, this baby joy found in the midst of tubes and wires, flurescent lights and incessent noise. Opthamology comes to check the weird eye thing and reports his eyes are fine - that possibly he has a slightly lazy eye that reacts badly to stress and medication. Despite the past 23 hours he is doing so well 3 days to discharge is not out of the question. The worst is obviously over and we can be relived. Lessons learned in the ICU are quickly forgotton for self-protection. It's 3:30 and the neurologist also comes to look at the eye-thing. He is sure. Jake has had a stroke and cannot see on his left side. The next 24 hours will be echocardiagrams to check for additional blood clots in the heart, a CT to confirm stroke and check for head clots. I will endevor to ask the right questions and find out how I can help my beautiful boy overcome or adjust. But that's the next 24 hours, not these 24 hours. These 24 hours are over, 10 steps forward, 5 back. I try to count my blessings - the stroke only affected his left-side vision, not his legs or arms, not his speech. It could be so much worse. I marvel when he smiles at the sight of me. I never knew, Luckily, it's all just 24 hours in the ICU. 7:55 p.m. - 2006-01-16 ----------------------------------------------------------------------------------------- Post-op news Jake came through his cardiac cath and his open heart surgery with flying colors. He got the hemi-Fontan. For anyone who is new or a fellow parent, he was a 2 lb 14 oz preemie diagnosed in utero with HLHS (Hypoplastic Left Heart Syndrome). Jakes HLHS includes: Double outlet right ventricle (DORV) In people-terms it means he has half a heart with a little bit of every heart defect thrown in for good measure. Worst part of this visit: Explaining to 6 month old Jake that he can't have a bottle for 8 hours. Also known as an exercise in futility. Funniest part: They tried to do the cath through the femoral veins on either side of his leg but they were blocked by scar tissue so they went in through his neck. The post-op for the femoral sites was immobliztion of the legs for 6 hours and a pressure bandage. The neck site - a looney tunes bandaid. This is funny to me, I dont know why. 5:37 p.m. - 2006-01-12 ----------------------------------------------------------------------------------------- My Long Medical Rant or Getting It Out of My System Face will be getting a cardiac cath next Wednesday, followed by his second open-heart surgery on Thursday. NUTRITIONIST I know it says somewhere in your stupid handbook that nutrition is more important than constipation. I believe that is because it's not YOUR problem - you dont have to hold my baby as he cries for hours on end from the pain of constipation. Neither you nor anyone else has explained to me how getting extra calories makes up for the fact that while he is crying, he is sat-ing FOR HOURS in the low 40s. How many calories does that consume? Is that good for him or his heart? Understand that when you say to a family "We are going to TRY this..." it means that said family will have to be extra-alert and diligent, keep close track of symptoms and be able to sort out normal symptoms from possibly accelrating symptoms. Care of a newborn is exhausting enough without a ton of additional experiments. I tried your way already and IT DIDNT WORK. Accept it, move on, adapt. HE DOESNT NEED THE EXTRA CALORIES TO BEGIN WITH. Telling me that "He's growing but not as fast as we like." Guess what, tough shit. And oh yeah, I looked it up - weight gain in a newborn of 1-2 pounds per month IS good. Born at 2lbs. 14oz, up to 6 pounds by his due date 2 1/2 months later (lets not forget also recovering from open heart surgery). As of today, at almost 6 months he is 10.5 pounds. NEW NURSE Dont be scared. I know it's embarassing to screw up but apologizing and fixing your mistake - best solution there is. You did good. NURSES To 95% of you, I worship the ground you walk on. For the other 5%... Dont lecture me about any mistakes Ive made. If I tell you I did something wrong, Im just letting you know, not looking to be educated. Did I sue your stupid ass for feeding my son for 2 days on expired formula? I did not. I didnt even yell. Or lecture you. You fucked up. Welcome to the real world, we'll just have Manny haul your pedestal out. I have avoided exploring the notion that my son's chemical burn was caused by a nurse's carelessness. You told us it was normal but that stretches credulity. And it has disfigured him. It's possible I might have to sue you for this. On a side note, I wish there was a way that the hospital (if they did do wrong) could just say "Sorry we screwed up. We'll get him the plastic surgery he needs. Everyone's happy except the lawyers. I understand that you probably screw this up because it has nothing to do with your job and perhaps most people dont care or really listen but Im only gonna tell you one more time. When converting my baby's weight from kilograms to pounds, the result on your calculator is not in pounds and ounces, it is in POUNDS ONLY. So 5.5 is NOT 5 pounds 5 ounces, it is 5 pounds 8 ounces. This matters when you have A) a preemie and B) A snotty nutritionist telling you your baby is not thriving. Every ounce counts. By the way, I dont care if you come in my son's room so you can play PS2 or watch tv. I dont care if your playing games on the computer or surfing the internet. I dont care unless youre not doing your job. (Funny, most of the nurses I caught doing these things were the best nurses).
"Family rooms". Calling them family rooms does not somehow make them not a waiting room. Im pretty sure no one is in there for the fun of it. TVs in the waiting rooms. I have never seen a single parent whose kid is in the ICU watch tv (staring blankly at it is another matter). The tvs get watched by the other family - cousins, aunts, uncles. Besides kid's tv, which is essential, cant I get some silence somewhere? Go home and watch tv. Why are there candy vending machines on every floor of the hospital? Of course Im gonna eat more if it's right there and available and Im stressed. Your pillows and blankets suck. Although there is no sanitary way to address this, the couch is uncomfortable to sleep on. The system that creates the following comedy in 3 Acts: ME: I want to be informed when they remove the pic lines. Do you know when that will be? Repeat this scenario for removal of pic lines, endotracial tube, foley cath, venus line, chest stitches, and chest drain. Act as if I am being unreasonable when I say that Im pretty sure writing a note in the chart wont help. Get offended when we laugh directly in your face when you assure us that A) your particular note will be effective B) The doctors are definatly not removing anything today.
J calls you "the scary lady". I dont know who told you that dyed black hair, pale white skin and shockingly red lipstick is attractive but A) they were wrong B) the 70s are over C) KISS is not looking for backup. It's okay if I cry. Really. Sometimes when you are watching your infant being kept alive by machines and you measure his health by watching various fluids leak out of him the only sane response is to cry. It's also okay to cry when they tell you your baby died (as they try to bring him back). I swear, ask anyone. Seriously, ask someone because when I have a conversation with you and walk away and then cry it is not a bid for you to follow, it's a bid for you to leave me alone. Dont make me blog you. And dont touch me. I dont like being touched by strangers. Why is touching strangers okay?
You are learning. You dont always have all the answers. That's okay. Dont make answers up thinking that I will believe you. I call bullshit. Then I can never trust that you know what you are doing in any arena.
Just because you know what you are talking about medically does not mean you know what it is like. The hospital staff fuck up way more than you will ever know and trust me, caring for a handicapped child is just as difficult as being his doctor. You and your "experiments" that I have to chart can also kiss my butt.
For those who dont know what a fellow is, they are doctors, only cockier and temporary who are trying to learn while simultaniously being arrogant jackasses. When I asked you why you chose a certain treatment option and you said "You know, your son is very sick." CARDIOLOGIST VARIOUS ASSHATS Dude, I can see your the kind of person who needs to be the center of attention and you are hopefully distracting everyone with your colorful stories about shoplifting. When you start to intimate in a loud voice that maybe you should speak more quietly or one of us strangers might report you - you sound like a moron. Lady whose kid, it turns out, is fine and just needs to be followed carefully for a while. You are bitching to me that you will have to drive once a month for four hours to get to his caridology appointment. You tell me Im so lucky - I live close. I should appreciate that. The nurse who asks me every time she sees me if I feel how lucky I am yet. What is it with you people? Show me completed FDA testing for hearts individually cloned and grown in an animal and then I will... still not feel lucky. Grateful for scientists, researchers, my son's strength and surgeons, but lucky? No. Now shut up. Security guards whos main job, according to all observable data, is not to limit authorized people to authorized areas but to give people a hard time about where they park. When I can, at any moment, recite the elevator message "1st floor atrium, information, emergency and admissions" you need to change the message or give me valium. I hate you BHOE, I hate your flourescent walls, your sleepless nights, your cavernous sounds, the view out into the parking lot, the view out into the construction site, the view into the lobby where the light change colors, how McDonalds tastes at 4 am, the fact that McDonalds is the only thing open at 4 am, the ice machines that dont work, the floor that is annoying, the nutrionists who need a slap, the condescending doctors, the sound of children crying, the sound of my own child crying, the sound of hushed silence in the ICU, a nurse trying to "educate" me, the way the rest of reality drops away, lack of my precious Tivo, the fact that people only call the hospital room when good shows are on but no one ever interrupts my afternoon of COPS reruns, watching them wake up the baby when I just got him calmed down from last time, the sense of impending panic that overtakes me a many moments in the ICU, having to be brave, having to be civil, having to soothe the baby when all I can think is "This is all your fault", having to talk to anyone else during this time, having to listen to bullshit when Im savvy enough to know it's bullshit and keeping quiet about it, the gold gilt in the floor tiles, the ugly tile mural on the CICU floor, when the fire alarm goes off for testing, the knots in my shoulders that never go away, the sudden feeling in the middle of the night that my baby is dead, the nurse telling me that their already suck-ass pillows are scarce, and the color of the rooms. I will happily let all of that go next week. Just save my son. 2:08 p.m. - 2006-01-06 ----------------------------------------------------------------------------------------- The Very Best Present - Letting Pictures Speak for Themselves This -
3:45 a.m. - 2005-12-24 ----------------------------------------------------------------------------------------- 2005 - A Year in Review Dear Face, This is your first Christmas. You will never remember it. This is your first New Year, which you will also not remember. Let me recap the year for you… January Mommy found out she was pregnant. After 13 years. I was almost done – all I had left to do was get your brother to wear deodorant and force him to bathe regularily and Id be pretty much home free. Trade that in for sleep deprivation and crying and the “no!” years and the endless parent-teacher conferences – was I crazy? Apparently so. February Anyone who was anyone knew you were on the way and how happy your daddy and I were. We were convinced you were a girl and we decided to call you Lexie. Your ultrasound showed you laughing. March Mommy was miserable with her huge ankles and grumpy hormones. Mommy has always hated cake. I never eat cake and yet, with you inside me, every cake I see is fair game. You sure do love cake. April We found out that you had a special heart. Mommy and Daddy were sad that we couldn’t help you. We wished with all our hearts that we could bring you into the world without pain or hurting. May We tried to find all the ways we could help you once you were born. Our landlord began trying to kick us out of our house illegally because he knew I was too distracted to put up a good fight. Your dad was kind of glad because his OCD couldn’t handle living in a two hundred year old house anyway. Ah, those hardwood floors, break my heart. Mommy started packing things up and we began to look for a house we could all live in happily. We had until the end of September, after all, you weren’t even due until September 15th. June Mommy was getting huge and I told you you better not come early. I wanted to hold you so badly and I was so afraid I would never get the chance. I cried a lot and drove daddy nuts. Daddy became more and more frantic about finding a place to live. July Mommy had her birthday and you must have been jealous of all the cake because you decided to come. 10 weeks early! Mommy left her bed to come touch you for the first time for a few minutes before your first open-heart surgery. I told you how much I loved you and then they wheeled you away. I was so scared but you just laughed at me. August You got extubated! Mommy got to hold you for the very first time. In all the world there is nothing so wonderful as holding your baby for the first time. I love you so much, face. September Two months old and home with us – woohoo!! No more hospital treks, no more fast food, no more annoying people getting in between all the cuddling. We had so much cuddling to catch up on. October Three months old! You start dying, right before daddy’s eyes, then mommy’s eyes, then finally the doctors eyes. Back to the hospital we all go. You spend your very first holiday (and one of mommy’s favorites) in the hospital. Now mommy is even more of a nut job and aggressive to health professionals (when I embarrass you with my rudeness later in life you’ll know why). I trust no one when it comes to watching out for you. November Finally out of the hospital – four months old! So big, you went from a 2 pound, 14 ounce baby to a 9 pound chunk-a-monk. The cuteness is overwhelming. December Back in the hospital for 2 days – 2 days before Christmas! Almost 10 pounds your poor heart is trying so hard but a cold is clogging your nose and making it hard to get oxygen and food. You are now on even more medicine and they schedule your second open-heart surgery for January 12th.
Mommy 3:40 a.m. - 2005-12-24 ----------------------------------------------------------------------------------------- |
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