I need some reassurance!

I came on here this morning to find out about post op and where my 16 yr old daughter should be at, although I am quite aware that each person is different, but nice to have some type of comparison. My daughter had a VERY hard first week, then once the nausea and pain was under control, she just took off, seemed so happy to be on the road to recovery. Now she seems as though she is at a stand still. I should have known the other day when she said, "I hope Im not doing too much, I think I may need to slow down" it was a sign. She started back to school for 2, half days, stayed home the next day and slept or laid down all day. Today, the fourth day, she is laying down and resting, and trying to push a half day again today. She is exhausted, not a lot of pain, just hoping this is all normal. I just want my kid back, especially after putting her through all of this, I want results and am desperately trying to be patient. All I need to hear is that this is normal and she needs time, but over time, things will get better.

I'm 7.5 weeks post op and I'm starting to feel somewhat back to normal. I still tire easily. I still get some muscle aches and a fatigued feeling in the back of my head at the end of the work day. It takes a really long time to fully heal from surgery and the stress it puts on your body. I know between weeks 4-5 I could barely get out of bed. I actually felt more exhausted than the weeks before. It's a process and sometimes you end up needing to take a step back when you think you should be going forward.

Not at all have I ever felt offended on here, by ANYONE! But thanks for thinking of my feelings. I like your advice on the above...I do like the thought that she can just go fill a chair from time to time so she does not get robbed of Sophomore year, she has been through enough. I was a little disappointed in her teachers giving her too much to think about, but then again, they have NO CLUE as to what this kid has been through.

The school nurse just asked that I stop in today to talk with her and bring some paperwork from the neuropsych evaluation that made some recommendations for her educationally. I am going to head there soon.

These just TWO responses were exactly what I needed to read...I just want to know that it is all normal and I will have my daughter back some day...and I am willing to be patient.

Thank you soooo much, you have more help than you realize :)

Beeba said:

Pammyg, I think you know from my previous posts and responses that I do go for extreme caution. And I can't help wondering if I have actually offended you before due to my bluntness. I hope I haven't as that would never be my intention. I always have our members best interest at heart.

I do believe there is sort of a honeymoon phase. Strangely because it is pain(for me) beyond comprehension. But at least it is over. No decisions to make. Fear of death passes. You deal with the known as opposed to the unknown. That lasts for a bit of time. Then almost in a post traumatic experience it all sort of comes back to you. Like I had this why do I still hurt, why am I not 100% I feel good enough and people are telling me to get back to life..... A range of emotions combined with new and changing physical stuff. Goes on and on.

This is a major surgery and it does throw your body into shock a bit. You tire very easy and the more you push the more you can pay. If you have to force anything it is too much and will come at a cost. She is so high energy that when she feels perfect my guess is you will really have no say. Perhaps she can go and fill a chair but talk to teachers about no homework. At this juncture - again I am extra cautious - would you consider letting her take thru the new off? It will give her the freedom to rest when needed and allow her not to over do it. Also if she is in a public school she qualifies for home instruction. She will get one on one instruction and won't miss any class work and grades will be maintained. At this age her true motivation to get to school is probably more a social need. Don't you remember being 16 your friends are your life!! If you chose that route you have to commit to an 8 week absence to qualify but in actuality she can go back sooner - they don't tell you that. At 8 months I still have the occasional day where I just sit. And guess what? That's ok. Your goal is a great healthy future not a fantastic 16th year. This is really more about helping for life not for the immediate. As a kid I had severe mono - and yes I would lie to my tutor and say I had to go pick up stuff at school - and yes the vp had to drive me home because I would fall asleep on the picnic benches - but my mother said that illness changed me. This is way more severe I can't imagine it not changing her. She will bounce back and you can't stop her - but if you give her the out - see if she takes it - it will speak volumes. Good luck with all of this and hoping she feels better very soon.

My daughter is 14 yrs old, LOVES school and is a big time runner. She likes to live life 100% and isn't into wasting time. That said, today is 16 days post op. She is going to try a half school day today and tomw then take the weekend to rest. Some days she makes a ton of progress and some days there's no improvement or she feels even worse. Not to mention the emotional toll that 2 years of pain has caused, facing her own mortality: having to walk away from us and step into an operating room and fearing that was the end...life passing her by during the suffering and recovery...she has essentially LOST most of middle school, feelings of being different than everybody else for all these reasons...I could go on and on. This is serious shiz.

Last week at her post op follow up, one nurse pract was amazed at how well she's doing while another acted as if everything she is going through is do bizarre and she should have been in school at day 10 or 11. Typical.

For us, we just play it by ear. Push a little, back off, push a little, back off, listen, talk, listen, listen, back off,...

It will take times. Lots of it :)

* One thing I do though with the teachers and admin is I now TELL them the plan. For example, I'll say: "Since she's having such a rough patch right now, she's JUST DOING the review section on chapter 5. No need to spend time on each little assignment in between, as we went over the quiz at the end. She's all squared away there." OR I'll say something like: "She's now got the main theme of the book so I told her not to do the 2 essays and to get right into the study guide packet." I seem to get less push-back with this tactic. IF something is still marked as missing, I'll tell them: "We had discussed this..."

Normally, I am not so manipulative but as a CM mom, I had to adapt a little!!