MooCow Posted March 2, 2017 Share Posted March 2, 2017 Praying for you guys Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted March 2, 2017 Share Posted March 2, 2017 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted March 2, 2017 Share Posted March 2, 2017 I can't even imagine how difficult it must be to have to wait- again. Praying for your daughter and you. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
Stacia Posted March 2, 2017 Share Posted March 2, 2017 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
mominco Posted March 3, 2017 Share Posted March 3, 2017 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted March 30, 2017 Author Share Posted March 30, 2017 (edited) The surgery is done! She had the brain surgery on March 15th (two weeks ago) and did great! Spent 8 days in hospital, 2 in PICU. Surgeon was awesome as I knew he would be! She had some rough days starting around day 3 but they tweaked her meds and she started to do better. Came home on a lot of medicine but finally weaning off many of them. It did not seem to change her head pain/pressure so they are still looking at the cause of that, seems like intracranial hypotension so they put her on florenif to see if that helped. She was on IV fluids and caffeine pills in patient but now we are just trying the new meds. They have also considered doing nerve blocks for occipital neuralgia but they want to give her more time from the surgery for the inflammation to go down and see if the head pain lessons at all. Her recovery from surgery though is going great. Her neck feels pretty good and her stitches are already out! She does look better! She has more color, she is forming words better, she is more present and more social. She keeps telling me she loves me and thank you. She is just different and both her surgeon and her pain doctor have noticed a difference. It's kind of like a little light has come back on. So it didn't resolve all the issues but I am so happy it's over and I do feel it helped. She says she feels happy and not anxious any more. The surgeon did say her cerebellar tonsils were very impacted and down to the level of C1 which the MRI did not show, and they were not able to pulsate at all. She had lots of scar tissue as well which he cleaned up. He also mentioned her dura was quite thin (sort of what he expected with the worry about leaks). They did a repeat MRI before she left just to check for leaks and everything looked good. The hardest part of the process was that no one from my family came to see us in the hospital, not even her dad so this was all on my shoulders as it has been for quite a long time already. That was really tough on her. But the surgeon was so supportive, the entire Neuro team and the nurses were great. They even washed her hair before she left. The surgeon really wanted her to do things that she wasn't doing at home to make sure she could do them, even made her take a bath before he discharged her. Post op is in three weeks but things are moving in the right direction. She is more then likely going to go into an intense rehab program there soon. This will probably be my last update as this thread is quite long and we finally have answers. Just wanted to share some happy news with you all as you have been so supportive for this whole journey. Much love and hugs to you all! :001_smile: Edited March 30, 2017 by fourcatmom 33 Quote Link to comment Share on other sites More sharing options...
school17777 Posted March 30, 2017 Share Posted March 30, 2017 So happy to hear that it was successful! 1 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted March 30, 2017 Author Share Posted March 30, 2017 I feel like a HUGE weight has been lifted! That was a very long year!! :o 7 Quote Link to comment Share on other sites More sharing options...
Barb_ Posted March 30, 2017 Share Posted March 30, 2017 I'm sorry your family sort of abandoned you. That must've been terrible. :grouphug: BUT also so happy for you that surgery was successful. What a nightmare year you've had. 3 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted March 30, 2017 Share Posted March 30, 2017 Thank you so much for posting the update! It's terrible that your family didn't come to visit, but you were there with her and th surgery was a success, and that's what matters most. 1 Quote Link to comment Share on other sites More sharing options...
displace Posted March 30, 2017 Share Posted March 30, 2017 I am so glad for you all! It's so uplifting she feels better :) 1 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 30, 2017 Share Posted March 30, 2017 Glad to hear it went well. 1 Quote Link to comment Share on other sites More sharing options...
creekland Posted March 30, 2017 Share Posted March 30, 2017 Glad to hear that went well, but please do continue to update. I plan to keep y'all in my prayers - that this works well and that they get the whole thing fixed. You've been on my mind lately - wondering. 2 Quote Link to comment Share on other sites More sharing options...
Reefgazer Posted March 30, 2017 Share Posted March 30, 2017 Very happy to hear the good news on the surgery! 1 Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted March 30, 2017 Share Posted March 30, 2017 I'm so glad you posted an update. I was hoping your dd had a successfully surgery after having to wait so long! It's great that she's recovering well. I'm sorry that your family wasn't supportive. That really stinks! Sent from my iPhone using Tapatalk 1 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted March 30, 2017 Author Share Posted March 30, 2017 (edited) Thank you everyone! I am pretty much beyond the whole family thing, didn't really surprise me actually and I am going to be pursuing a divorce but I have waiting because one big thing on my shoulders at a time was enough and i didn't want to do that to her either. But, it wasn't about our marriage, it was about her and it had just come up in counseling the other day and so it was on my mind again. Anyways, lots of recovery and rehab to do and will see how things play out with intracranial hypotension and/or occipital neuralgia. The other thing I didn't share was right before surgery I got the neuropsych testing results she did in January back and they were not good. Her scores had declined even more from the year before when she was tested after the TBI. Her memory, executive functioning, fine motor, some were in the less then 1% for her age, very low. She was actually diagnosed with mild neurocognitive disorder just before surgery which really hit me hard. The surgeon is hopeful that once she feels better and as long as she wants to get better that those issues will improve, especially with the surgery being done and knowing how tight she was in there. It's so hard to see things like that on paper. I have no regrets in doing the surgery and the testing just put fuel to my fire that we just needed to get through it. A friend of mine came over to the house yesterday and said she already sees a difference in how she is talking, just forming sentences better and not frustrated. it was like before she had to think to talk, it didn't just happen. Now, it's just flowing more naturally. It makes me sad how much this whole thing really affected her. So, i have hope that these things can get better with time, and therapy. If she goes into the rehab program she would have access to water therapy, PT, OT, counseling, group counseling, family counseling, school (i think 2 or 3 hours a day with credentialed teachers), and I think accupuncture and massage if she wants it. I am not sure what else I should push for, if anything else is needed beyond that. The only thing that comes to mind is some kind of vision therapy for her but I am not sure if OT would cover some of that or not. Edited March 30, 2017 by fourcatmom 7 Quote Link to comment Share on other sites More sharing options...
creekland Posted March 30, 2017 Share Posted March 30, 2017 Not quoting as I'm unsure if you want it quoted, but based upon your previous post I just want to add that many kids can have extremely good recoveries with a parent right alongside them cheering them on (after appropriate medical intervention), and in general, just being friends. I'm glad you are there for her. Many parents aren't. Some outright leave their kids (disowning them). I'll admit I don't get it - what goes through their brains. I can't imagine letting one of my kids down, esp over a medical condition that isn't their fault. 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted March 30, 2017 Share Posted March 30, 2017 Yes! With therapy hopefully she can make up some of those deficits in function. If there is one thing I am convinced of these days it is how amazing the brain is, especially with caring and involved people providing therapy and support. Speaking of which, we have an OT due here soon and I have cleaning to do :o Quote Link to comment Share on other sites More sharing options...
displace Posted March 30, 2017 Share Posted March 30, 2017 The rehab program sounds great with all the therapies! It's hard to do everything everyday independently. I think it's encouraging that others are noticing an improvement already in her too. (Hugs) for you too. 1 Quote Link to comment Share on other sites More sharing options...
Barb_ Posted March 30, 2017 Share Posted March 30, 2017 I admire your strength. Take care of yourself. 1 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted March 30, 2017 Share Posted March 30, 2017 I am happy she is so much better. 1 Quote Link to comment Share on other sites More sharing options...
mominco Posted March 30, 2017 Share Posted March 30, 2017 So glad things are improving! :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
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