complications
Tuesday, October 30th, 2007We’ve had some interesting medical developments this week, some good and some not so great.
Last Friday, I took the oldest to a follow up visit with the plastic surgeon who has been reconstructing his ear which is malformed (birth defect). It was supposed to be a pre-operative appointment for the second stage of reconstructive surgery scheduled the week before thanksgiving. We were in the room for thirty seconds before the doctor, donning his ever present bow tie muttered, “This is not good” while examining my son’s still-healing ear. He went on to explain that the skin graph didn’t take in three separate areas and C. is susceptible to infection because the plastic frame shaping his ear was exposed. I didn’t like the way he said it, like I was responsible for his skin not healing correctly and not having the wherewithal to know that what looked like a scab was actually exposed but scabby looking plastic. I know the surgeon probably didn’t think that but the man has an interesting bedside manor, especially for someone who specializes in working with kids. For one thing, he doesn’t even seem like he likes children and is too blunt with them. I wonder how someone goes to school for 8+ years to specialize in a relatively obscure pediatric area without learning how to treat kids in a way that makes them comfortable. But, as a parent who has endured multiple surgeries on her kids, I’ve learned that some surgeons are just plain different. Many of them seem to have an engineering type mind and don’t relate to the patients and their families as people whose mental state is just as important as their physical state. However, I would rather have someone who is hyper focused on what he or she is doing but lacking a warm bedside manor than a warm, kind surgeon who does a terrible job. Perhaps their job requires so much concentration that they develop tunnel vision and neglect to develop their personal skills. This is understandable but unfortunate, especially when you are the parent nervously pacing in the waiting room while your child is under the knife.
Friday, we scheduled the surgery for this week because C.’s doctor was adamant that he go in as soon as possible. The only day he could have the operation this week was Wednesday. Tomorrow. Halloween. My son didn’t hear this particular part of our conversation so he knew he had to have another operation but didn’t know when. I planned on explaining the circumstances in the car so was horrified when the receptionist called out, “Sorry you have to miss Halloween honey!” while we walked out of the office. He looked at me, thought about what she said and burst out crying. He is a fairly sensitive kid but it takes a lot to make my tough 8 yr old cry in front of strangers. Thanks lady- I hope your house gets egged. After I talked him down and offered a bribe, he accepted that his Halloween was going to be unusual this year. We went to the city’s Halloween Carnival as a family last weekend with all the kids dressed up in their costumes. I found out yesterday that his surgery is going to be early in the morning so we are hoping he might feel well enough to trick or treat tomorrow night after all. Kids are tougher than adults because if it was me, I’d be in bed moaning and calling for pain relievers but he’ll probably be clamoring for bite sized Snickers (and who wouldn’t?).
After all the ear excitement, we went in for Lily’s follow up appointments with her lung and stomach specialists. Long story short, she is doing fabulous. We don’t know if it is coincidental but her health and development vastly improved after last February’s heart surgery and she has been successfully weaned from using a ventilator. The doc wrote a discontinue order for her vent and the medical company came today to pick up the vent and its related equipment. This is HUGE. Lily needed a ventilator to breathe for her for the better part of 18 months but has not needed it since last spring. The $20,000 piece of medical equipment can go to another child. No more high pressure alarms, apnea warnings, broken pieces, useless circuits, disconnected tubing from her trach. No more risk of death if her vent stops working- the girl can breathe on her own. She still needs supplemental, humidified oxygen when she is asleep and is fed 90% of her food through a tube into her belly so we aren’t all the way through yet but it is within reach (knocks firmly on wood).
She has come so far in two years. I would link to this post from September, 2005 when she was a month old but my older archives haven’t been transferred since the site change. I need to buy more space so I can move them over because I don’t even remember those days very well- they were a haze of pain, sleep deprivation and breast pumping. I read those entries now and wish I could go back in time and tell myself and my husband to hold on because two years later, little girl will be a 25 lb whirling dervish who beats up on her brothers and shouts, “I WANT THAT” over her trach. I would tell her that her brain will be unbelievably fine and she will have a trach and feeding tube for a while but it really is no big deal.
“all three of our babies are still in the neonatal intensive care unit at a hospital about 25 minutes away from our house. i try to go up there every day to talk to them and sometimes hold them. half the time, i don’t get to hold them because they are being too “touchy” that day and don’t respond well to being handled.
this week has been bad. our two boys are doing well but our daughter continues to fight infection and she has a reoccuring heart issue. yesterday, as soon as i walked in, a nurse told me that the doctor needed to talk to me about our daughter. i knew what was going on- her heart problem was back and the doctor was going to tell me they wanted to do surgery if she didn’t self-correct by early next week. open chest surgery on the heart of a sick infant who weighs less than two pounds. an infant who has been on antibiotics since she was born because she keeps getting infections. a baby girl who can’t keep her blood well oxgenated because a duct won’t stay closed in her heart. our baby girl.
they may do surgery next week but we have to wait and see. every drug they give her has positive and negative side effects and they have to find out if she’ll tolerate one more medicine to close her heart duct without developing bleeding ulcers in her stomach. if she develops stomach problems, things could go from bad to worse. but the meds that may keep her from having surgery can cause stomach problems. catch 22.
this news and the continuing roller coaster of three babies in the hospital results is a crushing stress on us. we sometimes yell at each other because we have no one else to yell at. sometimes we just stare at nothing and silently hope she makes it through.”