Moms of little ones...what help is needed after translabyrinthine craniotomy?

[gracey79]

I know we are all different but I would like to know from a wife and mother, nothing against other people but there is just certain demands put on me and I need to know what I MAY and MAY not be capable of and how soon etc.

In our home we have a 9month old, a 3yr old and a 9 yr old who was diagnosed with some behavioral special needs.  My husband works for the railroad and when he is home he needs my help with the children so I am STILL needed.  My option for a caretaker works and their home is too small for the children to be happy in plus their rules and expectations are different. I do not want to be trying to recovery while feeling like I have to make my children do the right thing so they stay out of trouble, I am just not at mental rest there.  The other option gives my son severe allergy attacks which bring on asthma...so it is not an option at all really.  I was thinking I could try to wait till tax time and use that money to pay someone to care for me but if it is just going to be a few days till I can cook clean chase children etc then I will just tough it out at the first option, but they work too so not sure it will even work out there. 


 So moms of little  ones what help did you need and how long till you could do the normal tasks?

[Kathleen_Mc]

After my first surgey I certainly would not have been able to do what is on your plate.....I spent 80% of my time sleeping for the first couple of weeks and I was off work for three months post-op (I am a nurse). If my parents hadn't been able to be home a lot during the day I would have had to be in a rehab hospital for a while. After the second surgery (for regrowth) I had to have my children's father stay home for a month until I got back on my feet. (just to give you an idea, but everyone is different)
Kathleen

[Aussie AN Grad]

Hi

Having been there done that I'd recommend get as much help as possible and pay for it if you have to and can afford it. I have two young kids and post surgery I could barely look after myself let alone them for well over a month.

You need to recover and to do that you need to rest, brain and body, as much as you can for as long as you can.

This time needs to be about you (for once it's about the mother, awful that this is what it takes!). I was lucky I had family come and help for a couple of weeks and then my dad helped pay for a nanny a couple of afternoons a week for a few more weeks when my partner couldn't be around. And for a while you won't be able to drive (here in Australia it's 6 weeks minimum) think it's different in US.

Also I was told housework was off the list for a while too - post trans-lab - if it involved lifting anything or bending (loading and unloading dishwasher, washing machine, carry kids and baskets etc) - risk of CSF leak. I also lost my appetite so even thinking about cooking was too much.

But it doesn't last and it gets better given time and your kids will learn what a strong brave mother they have.

Take care

[Zinnia]

Hi there,
I had my surgery last October and my little ones were 6, 4, and 8 months. I had retrosigmoid approach but I'm sure a lot of the same rules apply. I had someone to help constantly for two weeks. I didn't get out of bed much the first week I came home and I did very little the second week. I gradually did more but looking back I wish I would have had more caregivers in place. I was on steroids for over a month after the surgery and they made me feel I could do more than I should have been doing. Not everyone reacts to steroids that way but I felt like I could lift and carry my youngest, no problem. Once the steroids wore off it was a different story. Now I'm dealing with headaches and neck issues and although I don't think they're related to not resting enough after surgery I'm sure it didn't help matters. All that to say, plan for at least a month of taking it easy even though you may feel like you can take on the world your third week out. Walk. Rest. Recover. You will be a better parent to your children in the long run if you can take those weeks you need to let your body heal.

My doctor said 6-8 weeks for recovery if everything goes well and I think that's probably a good gauge. But again, my approach was different and maybe translab is longer.

I sincerely hope you can find some good help - it is no easy task. Do let me know if you have any other questions.

Wishing you all the best.

Edie

[shannonbehling]

Hi,
I am 13 weeks post translabryrinthine craniotomy for my AN. I spent the first week in the hospital, my husband and sister at my bedside. The second week was pretty tough too. My husband travels for work and had to leave. My sister, who is a nurse, and some of my nurse friends spent that week caring for me at home 24/7. They made sure I could take care of myself safely before they trusted me on my own. I had a walker and shower chair. By the third week I was feeling more confident. I went to balance therapy and was discharged the same day. Yay! I am also a nurse who does risk managment and patient safety. I started working from home on week 4 for 10 hours, week 5 for 15 hours, and week 6 for 20 hours. By week 7 I was back in my office full time. As far as mommy duties... I can't imagine having to care for children the first 2-3 weeks. You will need a lot of assistance. I could barely take care of myself the first two weeks. My surgeon warned me it would be tough and I thought, my goodness, I'm a nurse. I've had a tubal and a chole and was back to work days later. Didn't need pain meds for those surgeries. This surgery was MUCH different. I was lucky enough not to have any complications such as CSF leak or infection. I did lose my hearing in my right ear prior to surgery and I am not bothered by that. I can hear well with one ear and have the option of a BAHA hearing aid in the future. My tumor was small 1.1cm. It did, however, wrap around my facial nerve as well as the hearing branch of CN VIII. Initially, my facial nerve worked well in surgery after the tumor removal and I could move my face in the recovery room just fine. By the time I arrived to the ICU, I started to lose facial nerve function. I am assuming it was from the swelling/inflammation. I was on high dose steroids for a few weeks and they just gave me insomnia and the jitters. I still have paralysis of the right side of my face but my surgeon is quite confident I will regain function. I am starting facial nerve stimulation therapy so I hope that will help. Otherwise, I feel great and life is good. I started driving on week 4, just short trips to the store. By week 8 I drove to Chicago for a bachelorette party. I was back running after my 6 week check up. I had to walk/run 1 mile the first few times but I'm back to 3-4 miles now. You really have to take it easy this first few weeks but after that take life by the horns! Hope this helps.