Hoping you may have insight for a single broke working Mom. My 6 yr old son willhave his decompression very soon. Assuming he has NO post-op complications, is it feasible to work at home on my computer a day or two after he comes home Post-Op to recover or should I anticipate taking FMLA leave for at least a few weeks? On a typical day, I somehow manage to get my work done when he's home sick from school and not sure if this will be much different.
I'll basically be a few feet away from my son working on my laptop all day, maybe a few brief phone calls and I can take breaks to care for my son whenever he needs me. I can also take vacation days or an extended lunch hour for any follow up Medical Appointments.
PS: I don't have family/friends to come over while I work 8 hours nor can I afford to hire someone even for an hour. This is basically all on me.
I hope you son does really well post surgical. He will rest a lot so you should be able to work from home. He will feel better being with you than anyone else. Please let us know how he does.
I work from home also and have a Chiari, brain sagging and large brain cyst. Neither one of my 2 boys has any of it, and I am divorced, struggling financially and medically. So although the situation is different in some ways, a lot is similar in that I can identify with you struggling financially and wanting and needing to work as much as possible.
If I had to weigh in, I would say that you could attempt to work from home, but maybe give him a few days at home first, before you start, to see how he does and is doing. After I had brain surgery for my brain cyst, I was laid up, but alert and did need the attention of others (my mom and ex-husband) to help me and take care of me. I would imagine your son will be the same way for the first few days.
I also wrote my story which is out now called, "It's all in Your Head," that you may want to check into. You may be able to relate to (your son and his circumstances), my story.
I am sorry to hear he has to have this. I couldn't imagine the post op care as a child. He will need his pain meds on time, my wife set an alarm to make sure I got them, even if I was asleep she woke me up. He will need help to get out of bed to use the restroom. You might want to get a urinal from CVS. Otherwise, he will be asleep a lot. I sleep pretty much for two weeks afterwards. Please be patient with him, he will still have extreme headaches for a while. I can handle pain very well (military) and there were a few times where I was dang near in tears.
I'm a single mother (broke, as well). I couldn't survive on the reduced amount FMLA would pay. My 14 year old had her surgery in January of this year. I stayed at home with her for nearly a month and really feel that working from home was something I could have managed easily. She slept a lot! She wasn't hungry much in the beginning either. When she was awake, she just wanted to be still and quiet and would watch videos. Best wishes to you both.
Another area to check into even with you at home is getting his NS to order a Home Health Nurse. It's covered by Most Insurance policies and Medicaid/Medicare and your state Vocational Rehab has funding for it as well. I wouldn't hesitate to contact my local Social Services to see what was available. You need help and that is what it is there for. You can send me a message and I can help you if you like. I work on special Programs for Ben's Friends Members and have a background in Healthcare Mgmt. and Health Insurance Appeals. I help many Ben's Friends Members. You are not alone. I promise.
In general, I give family members 6-8 weeks of FMLA. As mentioned, each patient is an individual and you will probably be fine working from home. Clearly, you need to make your own financial decision. I do always tell family's that there will be more to do when their child comes home than when they are in the hospital. I completely understand the desire to be with your child in the hospital. But there is help there. There may not be help at home. Make sure you are well rested and ready when you child comes home(sleep a night or 2 in your own bed if possible during the post-operative hospital stay).
You may want to prepare your job for you to be out for 6-8 weeks(certainly not excessive when your child is having "brain surgery.") No, I don't use that phrase anywhere but FMLA but it does gain the readers attention. that way, if there is enough flexibility, if you return early, you look like super worker. And you are not under any self-imposed pressure to return when your child may still need you.
I have a question for you. I'm wondering if you could tell me, for one, if you are familiar with a "sagging" or "slumping" brain? The reason I ask is that, I have a slumping or sagging brain. My Codman shunt was allowed to over drain for too long, being refused to come in to the office to be seen, despite all the odd anad debilitating symptoms I was living with. Anyways, I had to drive back to Barrow's in Phoenix where my fenestration surgery for my large Posterior Fossa Arachnoid cyst, was. I was living in Albuquerque. There, I was diagnosed with the slumping brain and Chiari, both significant. The surgery for fenestration was April of 2005 and the shunt placement was Sept. 2005. And the slumping happened in 2006.
Anyways, I live in NC now and see Dr. Alan Friedman at Duke. Great doctor! Love him. But he said that he was afraid to fix or operate on my Chiari, due to fear of making my sagging worse and that I would need to go to the Chiari Institute in NY to see if they can help me. I have not yet gone yet for multiple reasons. But am wondering if it is possible to fix a Chiari on someone with a sagging brain. I didn't want to waste my time going there if it isn't even possible. Are you familiar at all with this type of case? I m highly symptomatic from both problems and would love, love it, if I could get some relief. My now ex-husband and I divorced 2 1/2 years ago with him claiming he'd lost his compassion for what I've been left to live with, so now I am a single mom of my 2 boys; 14 and 12, and it is difficult. I would love to get some relief and don't want to do anything that is potentially more dangerous for me so I cannot be there for my boys.
My daughter had her Chiari decompression surgery at 6 years of age. I believe children are amazingly resilient and in my daughter's case her post op was actually quite uneventful. She was discharged 2 days post op and it was hard to keep her down and resting! I kept having to redirect her to bed or the couch.:) At one point I found her following her brother and the neighbor boy around the property and had to reel her in. That happened to be the day we arrived home from the hospital.
Again, as others have mentioned, everyone is different. Kids are amazing and heal quickly. You should be able to work with him nearby. I don't remember my daughter complaining or requiring much in regards to extra time from me during the day. I was not working though, but it still seems like it went smoothly.
Hey I hope his surgery goes well and you should be okay because he will be sleeping so much so you can have your quiet work time. My thoughts go out to your son and you <3
Sorry to hear of all those issues Maria. Sagging/slumping is common, particularly in cases where the Chiari is due to elevated intracranial pressure(something pushing the tonsils down, e.g. you cyst). the combination of the cyst/shunt/chiari makes sense and it sounds like Dr. Friedman would rather you go to someone who deals with it more frequently(he may also know Dr. Rekate personally). It can be treated but the decision tree will be more complicated. Is the shunt working optimally? Does the shunt or cyst need to be explored first? Can the Chiari be done with the location of the shunt? Does the shunt need to be moved? etc etc.
If you are that symptomatic, you do need to see someone who can help more.
Sorry to hear of all those issues Maria. Sagging/slumping is common, particularly in cases where the Chiari is due to elevated intracranial pressure(something pushing the tonsils down, e.g. you cyst). the combination of the cyst/shunt/chiari makes sense and it sounds like Dr. Friedman would rather you go to someone who deals with it more frequently(he may also know Dr. Rekate personally). It can be treated but the decision tree will be more complicated. Is the shunt working optimally? Does the shunt or cyst need to be explored first? Can the Chiari be done with the location of the shunt? Does the shunt need to be moved? etc etc.
If you are that symptomatic, you do need to see someone who can help more.
Thanks for the reply Dr. Trumble. Sorry, I guess I should have maybe explained more....my shunt was allowed to over-drain for several months. When I started having symptoms from the slumping brain and Chiari, I wasn't allowed to go into the dr. I was seeing and be seen. Still don't understand that, but.....my surgeon in Phoenix, I was living in NM, Dr. Spetzler...his office diagnosed the slumping and Chiari.
Anyways, they told me it feel due to the shunt over draining for too long. When it began to sag, then the tonsils herniated. The shunt is on the right side, kind of behind my right ear, and yes, Dr. Friedman wants me to see someone who deals with doing Chiari surgery, that has also dealt with the brain sagging,as well. So we shall see.
Thanks again for your answer. Maybe one day I will work up the nerve to look into the surgery. Maybe one day, I won't have a choice. Maybe....you'll look into my book, "It's all in Your Head." My experience of what I went through, and maybe tell others about it. I hope so. It was an interesting story - through a patient's eyes and have gotten a lot of good response from it.
Sorry to hear of all those issues Maria. Sagging/slumping is common, particularly in cases where the Chiari is due to elevated intracranial pressure(something pushing the tonsils down, e.g. you cyst). the combination of the cyst/shunt/chiari makes sense and it sounds like Dr. Friedman would rather you go to someone who deals with it more frequently(he may also know Dr. Rekate personally). It can be treated but the decision tree will be more complicated. Is the shunt working optimally? Does the shunt or cyst need to be explored first? Can the Chiari be done with the location of the shunt? Does the shunt need to be moved? etc etc.
If you are that symptomatic, you do need to see someone who can help more.