Having a tough time

[tammylh]

I'm having a really tough time. I can barely function. Work has been really slow this week and all I do is look through photos from Jesse's first surgery and read posts here and on FB. I know we'll get through this, but I really don't know how. I left work early today because I'm a complete basket case. Seven more weeks until Jesse's surgery. I can't miss anymore work or I won't have enough time off left. I got to get it together but I don't know how I'm going to do that. I get sick to my stomach every time I think about him going through surgery again. This has been so much harder than the first time. Maybe it's because we have to wait longer. I don't know really. It's just harder. I just keep trying to remind myself about how great he did, but I think its going to be harder for him this time because he is older and more aware of what is going on. And I worry that he'll swell up a lot more because they'll be doing more this time. He's going to do a split bone graft from the back to replace the forehead, so they'll be working on the back and front this time. I know Jesse will have a really tough time if he can't see and it just makes me sad that he has to go through that. We were lucky the first time and his left eye never swelled completely shut, but I just don't see that happening this time because of the amount of work that will be done. It just makes me so sad.

[evergreenmom]

No words of wisdom but lots of cyber ((((HUGS)))) for you Tammy....

[jjmc123]

Tammy, I think I wrote the same post a few weeks before Logan's last CVR. IT WILL BE OKAY. Jesse is amazing and will do great. We were told by the nurses that the kids swell less the 2nd time around due to the scar tissue from the 1st surgery. Not exactly sure why, but Logan did swell less.

[orsinger]

In March when it was confirmed that Lilly would need a second CVR/FOA it really hit me hard. Probably because I knew how hard the surgery was on our family the first time and now I know what to expect and I know it will be difficult to go through again. I had days like you are describing where I could barely function. I felt paralyzed. I literally would just sit and stare blankly. I talked to my doctor and she prescribed Lexapro. It has been the best thing I have done. I feel awesome and I'm actually enjoying my summer and not worrying the next few months away. Lilly's sugery is Oct 1 and although I know it will probably get harder as it gets closer I also know I can handle it and cope.

[Gingerjane]

Huuuge hugs to you. I understand the sadness you feel for your little one. It's just heartbreaking isn't it. It will be for the best, and one day soon you'll be able to look back on this time as a distant and horrible memory. I know, I know... No words help much. My little girl is having her CVR for metopic trig on Tuesday 17th, and I'm just about holding it together, but only just. Take care of yourself for you little Jesse. Xx

[Sophia's_mom]

I don't know how you are functioning Tammy, the thought of a second surgery makes my stomach churn and pulse to raise. Please don't be scared to ask your doctor for help during this time leading up to surgery. There are lots of mild meds that will help take the edge off. I asked for something like that prior to Sophies first surgery, and was offered it around one year post op (I was a mess, scared to death they were going to tell us another surgery was needed). There are lots of things that are non-habit forming to help you just get thru your day. Big, big hugs to you sweetie! I wish there was more I could do to help.

[*Jessica*]

I wish I could give you a big old hug!!! You will be on the other side, again, before you know it girl!

[tammylh]

Kristin - Thank you. :)

Cindy - Thanks for that info. Actually there is a woman on the FB group whose son just had a 2nd CVR for sagittal on Wed. with Dr. Fearon and he looks amazing! He hardly swelled at all. No black eyes or anything. I keep looking at the photos and just can't believe how great he looks, so that is comforting.

orsinger - Thanks. :) I was taking Trazodone, which helped some, but the side effects were awful. I'll talk to my doctor again.

Gingerjane - Yes, it is heartbreaking. I cannot wait for it to be over. It's been non-stop cranio for us for over a year. We just can't seem to get away from it.

Tessa - I don't know how I'm functioning either. Barely, but I'm getting by. I'll talk to my doctor. :)

Jessica - Thanks. :)

[orsinger]

I've taken a few different ones until I found one that worked for me. I also had some awful side effects on others. Good luck. I hope you find something that works for you.

[Monkey'sMommy]

Ditto on the advice about taking an antidepressant. I was on Paxil a few years ago and found it to be very mild and effective. Though I should say that I tolerate meds very well anyway. As for how it will be different going through it with a toddler instead of a baby, I planned for having a very active little boy in the hospital. I bought a Fisher Price musical seahorse that turns on by just pushing on the tummy. I put that in Monkey's crib with him about two months prior to the surgery so he was used to turning it on by himself, and he was attached to it & soothed by it by the time the surgery rolled around. And it was so easy to turn on by himself, he could do it easily even when his eyes were swollen shut. The other thing I did was bring his favorite DVDs to the hospital. Even though he couldn't see them, it was comforting to him to be able to hear his favorite shows. And many wagon rides around the unit, too!