by Lillian Csernica on November 5, 2015
Michael and I are back in the UCSF Benioff Children’s Hospital Oakland. On Monday Michael’s R.N. noticed some swelling around his Baclofen pump. By evening a redness had developed. I called the surgeon, who told us to come to his Oakland office by 8 a.m. the following morning. We did, and Dr. Sun made space in his surgery schedule for Michael. That was a very good thing, because by then the pump area had gone all hot, red, and shiny. That meant infection.
Both the Baclofen pump and the catheter leading to Michael’s spinal column have been removed. The infection is being treated with antibiotics. Another problem is figuring out just how much Baclofen Michael must now receive via his G tube. That means Michael has to deal with at least some degree of Baclofen withdrawal, which is very unpleasant.
So Michael is back in the PICU. On the plus side, many of the R.N.s are familiar with him thanks to our spending most of the summer here. The social workers got me a room in the Family House right away, so I have somewhere comfortable to eat, sleep, and shower. I’m just happy we got Michael to the doctor in time. The last thing Michael needs is to become septic. That led to organ failure last time, so we cannot risk having that happen again.
Keep us in your prayers, folks. It’s just one day at a time until we’re out of here.
by Lillian Csernica on July 20, 2015
Michael has surgery on Wednesday morning. Bright and early, and when I say early I mean I’ll be up at 3 a.m. prepping him for the 5 a.m. departure to the Oakland Children’s Hospital. The anesthesiologist wants him to have a breathing treatment before we bring him in, along with his regular meds. Wrestling my poor boy into his percussive therapy vest at that hour will be hard on both of us.
Then we board our van for the long drive. Caffeine will be essential. Given my sleep patterns, I will probably just skip my insomnia meds and go for the long haul. I’ve pulled overnighters before for Michael’s sake. The fight-or-flight response brought on by seeing the medics wheel Michael away on the gurney should be good for a few solid hours of jittery alertness. Yes, I’ve been through this with Michael before, and no, I’m not really worried because our surgeon is the best, but Things Happen. Only fools tell themselves nothing could possibly go wrong and really believe that.
We’ve been told recovery time for this procedure is three to five days. That’s what they tell everybody. My husband is not thrilled about this, because our lives are planned very carefully on a day to day basis. Nursing schedules, what John might be doing, what appointments my husband, my sister, or I might have. I’m really hoping we get to come home by the weekend so Michael can recuperate in his familiar surroundings with all of his comforts.
And this time, I’m going to positively ENGRAVE our name and address on Michael’s enteral feeding pump. During one of our many hospital stays, the staff at that particular hospital sent our pump equipment home with some other patient. We raised hell about that, believe me. The hospital had to send a courier after the patient and parents to recover our equipment and deliver theirs. Different model pumps make a world of difference, especially when the particular formula for the food is different. The formula for Michael’s food tends to thicken up once it’s mixed. That means the tube size on the feeding bag and the related equipment inside the pump had better be matched to the viscosity of the formula. Otherwise the pump jams, the alarm goes off, and Michael doesn’t get fed.
Can you tell I’m already on edge?
by Lillian Csernica on March 26, 2013
It’s been a long day, the kind of day I want people to witness when they make ignorant, offensive remarks about my life.
I am not feeling well right now. Never mind the details. It’s enough to keep me from leaving the house.
John played a Narrator in his class’ Reader’s Theater production this morning. He really wanted me to be there. Fortunately, Chris decided to go in my place. Chris doesn’t get to be part of school day events very often. so it was a nice surprise for John. I was happy John’s teacher got to have some face-time with Chris. I was hoping for a smooth afternoon since John was in a good state of mind after the performance. Nope. He was uncooperative and defiant and things wound up escalating into a full meltdown, teenage version. By the time I worked up the strength to come downstairs and get in the middle of it, there was no way I could interrupt the cycle John goes through. His aide couldn’t prevent it, and the confrontational style of other people in the house didn’t help matters.
On top of all of that, there was Michael‘s day. It started off with a really unpleasant diaper situation. Once that was cleaned up, it was time to get Michael ready for his MetroParacruz ride to the dentist. (MP is a minivan service for the special needs and senior citizen population in our area.) Due to my being out of action, my sister rode with Michael and then later, after John’s performance, Chris went to the appointment to add any required parental authorization. Michael has what’s referred to as secretion management problems, which means he drools a lot. That results in serious plaque build up on his teeth, which can cause various dental problems. So every three months he has to get his teeth cleaned. The problem is, in order for the dental hygienist to do a thorough job, Michael has to be put under anesthetic. Michael needs more teeth pulled because more are coming in and the narrowness of his jaw due to hydrocephaly means there’s no room. Convincing the insurance company to give us the anesthesiologist for oral surgery is very very difficult.
And this evening Michael is showing flu-like symptoms including vomiting, which is extremely dangerous for him because it can lead to aspiration pneumonia.
This is why I have all three kinds of insomnia. I’m too stressed out to go to sleep for fear of what medical crisis might arise when I’m not awake to cope with it. After about five years of experimentation, my current doctor and I have finally arrived at a combination of meds that helps me sleep without turning me into a zombie. Sleep is good. Sleep is essential. Do not underestimate the importance of sleep. Lack of sleep screws up your brain chemistry and that does bad things to the rest of you.
Having said all this, let me close by offering my prayers and support for all special needs families everywhere. I know many of you have a lot harder than I do.
by Lillian Csernica on March 12. 2013
It’s high time I dragged myself into the 21st Century by joining the blogosphere. I’m a writer. Fantasy, dark fantasy, historical romance, horror, nonfiction. I have one novel out, SHIP OF DREAMS, under my romance pen name of Elaine LeClaire. You can find my short fiction at Tales of Old, Tales to Terrify, and soon in Midnight Movie Creature Feature Vol. 2. I’m very fortunate to have a career that lets me work at home because my two sons are both what’s now referred to as “special needs” children.
They’re not so much children anymore. Michael is sixteen. He had to be delivered at only twenty-three weeks, making him a micro-preemie. A pulmonary hemorrhage and a grade four plus brain bleed left him with cerebral palsy and later seizure disorder. He is medically fragile, an invalid who is either in his wheelchair or his hospital bed. He doesn’t let any of that stop him. He’s an award-winning artist, a great bowler, and he loves classic rock. Michael has a great smile and a wicked sense of humor.
John is fourteen. He went full term, but he did refuse to breathe. His brief bout of hypoxia is what we believe caused his speech delay. Speech therapy led to an evaluation by a neurologist which resulted in a diagnosis of autism. John is low on the spectrum, with a talent for drawing that began when he started watching “Blue’s Clues” at age two. He has taught “Drawing with John” classes at his elementary school both in the classroom and over the school’s closed-circuit television broadcasts. John loves digital animation and studies the Special Features options on DVDs which give him a behind-the-scenes view of how the artists and programmers work their magic.
It’s not easy finding time to write when each day I have phone calls to make, medical supplies to order, school projects to supervise, doctor appointments, prescription refills to keep track of, and the other random demands that crop up all the time. I tend to stay close to home for the boys’ sakes, so writing lets me run away from home inside my own head. I look forward to sharing the ups and downs of this life with you.