Category Archives: Baclofen pump

In Need of Nurses


by Lillian Csernica on June 18, 2016

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I’ve been meaning to write more frequent blog posts.  Life has gotten in the way in the form of being seriously short staffed where Michael is concerned.  Right now I have two R.N.s and my sister, who does have experience with hospital and in-home care.  With Michael out of school, we’re running two eight hour shifts per day.  This means I have to pitch in as well.  I’ve had to take four of the eight hour shifts, three 6:30 a.m to 2:30 p.m. and one 2:30 p.m. to 10:30 p.m.

Michael takes seven different medications.  He needs at least two breathing treatments per day which include nebulizer treatment followed by three timed sessions with a percussive therapy vest.  Diaper changes can be quite laborious depending on the nature and quantity of his output.  Michael is twenty years old, close to six feet tall, and weighs 145 lb.  He’s on the gangly side, so rolling him from one side to the other requires considerable effort.

In the morning I fully expect to need Naproxen, if not my carefully hoarded stash of Vicodin.  I’m hoping the Vicodin won’t be necessary because I have an hour’s drive ahead of me in order to attend a writer’s group meeting.

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Adding to my joy this week is a breakdown in communications with the supplier of my antidepressant medications.  I did get an interim prescription for one of them from my doctor, but there’s been more difficulties with the other prescription.  Tomorrow will be Day 3 without Pristiq.  I will either be what some people might consider manic, or I will have no patience with obstacles and no filters in place to moderate my reactions to such obstacles.

Not really the best frame of mind for giving critiques in a writer’s group setting.

On Sunday we interview yet another R.N.  I’m really hoping she turns out to be a keeper.  We’re stretched mighty thin.  Summer school starts next week, but we still need a third R.N. to take some of the load off of my sister.

All of this leads me to think about what we’ll be facing once Michael is no longer in school.  He has two years left in the County program.  Then we’ll have to find other ways to get him out of the house and keep him occupied so he doesn’t languish in bed for the majority of his day.  That’s not good for his mental or physical health.

Doesn’t do a whole lot for mine, either.

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Filed under Baclofen pump, Depression, doctors, Family, frustration, Goals, hospital, Lillian Csernica, mother, parenting, perspective, Special needs, specialists, therapy, Writing

Routine Chaos


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.

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Filed under Baclofen pump, doctors, Eastern Orthodox Christianity, PICU

Clone Me, Please!


by Lillian Csernica on October 7, 2015

Stress.  It’s not just for breakfast anymore.

Today Chris took Michael in to have blood drawn so the doctors can see if his kidneys are still improving and the new diet is providing correct nutrition.

Tomorrow I take Michael to the specialist who will check his muscle tone, adjust his Baclofen pump if necessary, and decide whether or not Michael can return to school on Monday.

Tomorrow is also the day I see my therapist.  Thank God she’s willing to do a phone session.

I just got email from John’s teacher/caseworker offering me four dates and times in the next two weeks for John’s annual IEP.  Today is Wednesday, right?  The first of the four choices is this coming Monday.  I need notice, dammit!  We run on some very tight schedules around here.

The second date doesn’t work because in order to attend the IEP Chris has to take a day off of work.  The second choice is a week from today, also a Wednesday.  Taking a day off in the middle of the week causes problems.

The third choice is the 19th, which doesn’t work because I’ll be packing for a week away from home.

The fourth choice doesn’t work because I will be on a plane somewhere over the Pacific Ocean.

On the 16th I have a doctor appointment.

On the 26th Michael has a checkup with his gastroenterologist, whom we kept up to date on all of Michael’s travails during his two months in Oakland.  I should be at that appointment, since I’m the one who was at Ground Zero for all the hospital events, but I will still be away from home.

And the 31st is Halloween, of course, which is one of John’s favorite days of the year.  One of mine as well, because I really do enjoy seeing the costumes and giving out candy and/or little toys.  It will be nice to end this month on a festive note.

The 31st is also my deadline for two 2500 word short stories that must be set 30 days apart and relate to each other in some way.  I have a roughdraft on the first story.  I’m 1/3 into the second story.  There will be no doing five drafts per project on these.  I’m going to have to slam them out and hope for the best.

Think happy thoughts for me, my comrades-in-stress.  How do you folks handle this kind of high intensity scheduling?

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Filed under Baclofen pump, Depression, doctors, editing, Family, Fiction, frustration

Another Hospital Stay, Part 4: We’re Home!


by Lillian Csernica on September 4, 2015

Yes, it’s true.  We were discharged on Monday.  Michael is looking good.  He needs to gain back the weight he lost in the hospital, and he tires easily, but he’s in good spirits and that big grin is back.  We’ve had to replace his ketogenic diet with a formula that’s easier on his kidneys.  The nephrologist would like us to wait six months for full recovery before putting Michael back on the ketogenic diet.  He’s now on one additional anti-seizure medication which seems to be working.  He’s had a few very brief seizures, but nothing beyond the frequency and intensity he was experiencing before he went to the hospital.

I’m not good for much this week.  I’ve been reading and sleeping and binge-watching the first season of “Grimm.”  I’ve seen the occasional random episode of the show, but I’d never gotten the whole story.

Chris hired a new nurse.  We need her, because we won’t be sending Michael back to school for at least two weeks.  It’s always a little strange having somebody new in the house.  On her first day, which was also our first day at home,  the upstairs shower decided to just keep running no matter how I turned the faucets, even with pliers.  I thought I was going to have to start bailing out the bath tub through the window, but Chris managed to get a plumber to the house within ten minutes of me calling about the potential disaster.

Never a dull moment.  I think I might have that engraved on my headstone.

School is in, the neighbors are behaving themselves, and the cats are very happy to see me.  Every night there’s a competition to see who gets to sit on my lap as I lounge on the couch watching Netflix or Amazon or Hulu.  Now that I’m back, all is right in the feline universe.

I have two ten-page stories due by the end of October, then NaNoWriMo starts.  I worked on two or three new short stories while I was in the hospital.  I took a few big blank notebooks with me.  If I wasn’t writing in my personal journal, I was making notes or writing some piece of fiction.  I’ll have to devote a post to what happened as the hospital staff got to know me and word spread about me being a “real writer.”  Even in this digital age, some people still have what borders on superstitious awe toward those of us who can make the words keep coming.

It’s good to be home.

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Filed under Baclofen pump, charity, Depression, doctors, Family, frustration, hospital, mother, perspective, Special needs, worry, Writing

Another Hospital Stay, Part 2


by Lillian Csernica on August 1, 2015

I’ve been MIA because I’ve spent most of the past ten days at the hospital with Michael, and most of those days in the ICU.

The Baclofen pump replacement went well.  No redness, swelling, etc. at the incision site.  No problems in the Recovery room.

Then matters started to get complicated.  Instead of sending Michael to the Surgical floor, somebody in his or her infinite wisdom sent him to the Rehab floor.  The reasoning?  The staff on the Surgical floor weren’t as familiar with the Ketogenic Diet, and besides, the kids with Baclofen pumps all go to the Rehab floor.

Michael developed an infection.  Other bad things happened, but let me just say his left lung took a hit.  That’s his most vulnerable area.  His breathing was compromised, and sure enough, it looked like pneumonia.  I don’t want to hear the P-word.  That has been Michael’s #1 enemy for most of his life.

After two days on the Rehab floor, I had a polite, even-tempered, but very firm hissy fit.  Michael needed more aggressive care.  He should be sent to the ICU immediately.  The charge nurse agreed with me and called the ICU.  One of their attending physicians came to evaluate Michael.  The doctor asked me a few key questions about Michael’s history, then told the team of Pediatric M.D.s on the Rehab floor Michael did indeed need to be in the ICU.

This is why I work so hard to be calm and polite when I’m dealing with the medics.  I know when to get angry, and I know when to panic.  I also know how to make these feelings clear without actually taking them out on people such as the R.N.s who are always busting their butts, or the respiratory therapists, or the other People Who Aren’t Doctors.  Oakland Children’s Hospital is a teaching hospital, so there are teams of residents under the supervision of the attending physicians.  They do things a certain way in teaching hospitals, and that’s important to bear in mind.  I really liked the Pediatric residents who took care of Michael.  He’s just a complicated guy and needed what can be done better in the ICU.

Two days ago Michael’s kidneys and liver shut down.  Chris and I were living in absolute terror that Michael would need a liver transplant.  The liver specialist explained the whole evaluation process to us, the waiting list, the length of the surgery, and even what would happen if Michael rejected the transplant or was considered a bad transplant risk.  He would not survive more than a week.

I don’t EVER want to have this kind of conversation with a doctor again.

The good news is Michael is on dialysis right now and that’s helping matters.  His breathing is much better, with less equipment strapped to his face to help him breathe.  The kidneys and liver are amazing organs capable of considerable recovery.  Michael seems to be on his way to getting over all this, but we still have to be cautious.  Another infection, another fever, and all this progress would be lost.

I want to say a loud public thank you to my parish priest, Archpriest Basil Rhodes of St. Nicholas Russian Orthodox Church in Saratoga, CA.  He called a number of priests who reside in or near Oakland.  Fr. Ninos Oshaana was the first to arrive.  He said a molieben over Michael and anointed him with Holy Unction.  Fr. Ninos moved so quickly he got there before Michael was taken into surgery for the implantation of the dialysis catheter.  God bless you, Fr. Ninos!

I go back to the hospital tomorrow, suitcase in hand, to stay there or at the Family House nearby until Michael comes home.  Please keep us in your prayers.

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Filed under Baclofen pump, Depression, doctors, Eastern Orthodox Christianity, Family, frustration, hospital, mother, Special needs, specialists, surgery, worry, Writing

Another Hospital Stay


by Lillian Csernica on July 20, 2015

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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.

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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?

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Filed under Baclofen pump, doctors, Family, hospital, surgery