Nicholas’ eight plate surgery went really well. We spent the night before at the Hackerman Patz House right across the street from Sinai. For the kids it was like a mini vacation! And we got to spend some time with family since one of my cousins had an appointment with Dr. Standard as well.
When Nicholas and I headed over to the hospital on Friday morning he was really calm. While sitting in the waiting room he told me that he was scared but I assured him that it was ok, totally to be expected, and I reassured him as best I could. By the time they were prepping him for surgery he was relaxed. One of the nurses thought he had his “happy juice” already because he was so laid back.
Nicholas had a great rapport going with Dr. Pepple the anesthesiologist. Steven and I both remember meeting Dr. Pepple the day before Nicholas’ first surgery back in February 2005. Dr. Pepple spent a lot of time with us and talked us through a lot of our fears. At Nicholas’ eight plate surgery I learned that Dr. Pepple was a pediatrician before becoming and anesthesiologist. This did not surprise me at all. He was really engaging with Nick. He discussed the side effects of the anesthesia including a desire at 4pm every day to do homework and he told him that every Saturday morning he would wake up and feel like cleaning his room. Nicholas did not believe him but when he visited after the surgery he asked Nicholas “what will you be doing tomorrow at 4 o’clock” and Nicholas responded “homework”. What a good laugh we had.
Walking to the operating room was still very hard but the hardest part is kissing him goodbye after he is asleep. Dr. Pepple was singing Old MacDonald with him and he only got to the 2nd animal before he was out. It was calm and went just fine but it is still that moment that kills me.
Nicholas took a while to wake up after surgery but when he did he was very calm and they let me be in recovery with him before he woke up which is not how it usually works. The ride home was uneventful and all was well till about 2am when he woke up hysterical. We had not woken up to give him his pain medicine and he was hurting. It was heart breaking because it really was our fault. Luckily I was able to distract him and we chatted till it took effect. That roxicet is really great stuff! Needless to say we did not forget another dose!
When it was time to take off his bandage he was really nervous. With all that he has been through he still gets pretty upset by the sight of his own blood. Luckily there was hardly any blood under the bandage and the stitches did not look too bad at all! The next few days we kept him on the medicine and tried to encourage him to bend his knee. He was really reluctant and it got to the point that I was really worried that something was wrong because by Wednesday he still had a lot of pain when he tried to bend his leg. Not bending was making walking really hard for him and he could not make it through the day at school. We had thought this little out-patient surgery would be a breeze and he would be back in school on Monday. Things did not go as planned! On Wednesday I called the RIAO and Dr. Standard called me back and said that we should give him ibuprofen round the clock because it was likely inflammation that was causing the pain and difficulty bending. Apparently for most patients the eight plate insertion is quite easy but he has had a few who have had a hard time like Nicholas. He assured me that within a few weeks Nicholas would be back to his old self. His knee just needed time. Just talking it over with Dr. Standard was such a relief. I knew that Nicholas would be ok and I finally relaxed and focused on helping Nick relax.
It was a rough week for Nicholas. I felt bad that we really did not prepare him for the surgery very well because none of it turned out like we thought it would. For the first time Nicholas was feeling really down and I wasn’t far behind him. On Friday we were out and he was running and playing but tripped and bent his knee all the way. He was in so much pain and I just got down and held him and came so close to crying myself. I did not let him go till I knew I was not going to cry because I did not want him to see that. But all I could think of was how much this sucks. Seriously he was in so much pain and there was no way to fix it and he just wanted to run and play.
The emotional difficulties came to the surface throughout the rest of the week. Nick started out saying that he would rather have a fixator than an eight plate because at least then he could still bend his knee. Then he moved on to saying that he wished FH did not exist then he started saying that he wished he didn’t have fibular hemimelia, “fibular hemimelia makes my life hard” and “sometimes I feel like I just can’t take it”.
I have always known that I could not just fix his leg for him physically. I still wish I could give him my leg. More than anything I wish I could do that. But I always thought that we could get him through it emotionally. I thought if I did everything right and supported him and said the right things that we could avoid this moment. Looking back it seems kind of silly that I thought that. I have had to accept that it is ok for him to wish he didn’t have fh. I have wished the same thing plenty of times but only really when he is suffering and I feel out of control.
Nicholas was also having some serious fits which is totally not like him. I was really unsure what to do and ready to call a child psychologist when I decided to email the RIAO parents yahoo group to see if any other families have gone through this and sure enough they had. I received some really helpful responses and one in particular hit home for me. In it a mom suggested that the fits mights might be Nicholas’ reaction to feeling that things were completely out his control. Even as I write this I am thinking more and more that it is true because I felt that way too. I actually wrote it a couple of lines up. It is hardest for me as a mommy when I feel out of control.
Responses to my email from other parents really helped me to see that Nicholas’ experience is not unique and neither is mine. There are people out there who really understand! I also emailed some supportive friends and their responses were helpful as well. One offered the following advice. “I have a feeling life will be ebbs and flows like this for him – there will be a time when he’ll be at peace with it and then there will be times – like now – when he wishes he wasn’t dealt this hand.” Another friend wrote “I’m sorry to hear about Nicholas he really is such a special boy! I can’t imagine the pain he feels or you but you are one of the best mothers to explain anything. I know it doesn’t help but you are really great at making someone feel better and I know Nic feels that too. He will one day look back and remember that he kept his courage because you made him feel so special. I’m sorry that you and Nic have to go through this pain but he will get through because he has you. I know none of this makes you feel better because it just plain sucks and is heart wrenching to see your child in pain… What I’m trying to say is your encouraging words that he’s special will last not the immediate pain or frustration.” and another favorite response… “Keep smiling on the outside. Somehow pretend it’s fun. Nicholas will get through it all. When they are all done, we’ll all have to get together for a huge party! (Sometimes I think we should get together for an endless supply of wine!)” See what great friends I have in my life. Friends who are supportive, friends who have been there and friends who love wine!!!
Their words really helped me to realize that just because he was down now did not mean that he would be down forever. I can’t make it ok all the time. I can’t take it away. I can’t fix him emotionally any more than I can fix him physically but I can be there for him and support him through it all. I have always been able to put my fears aside and be brave for him and that will not change. Words of encouragement from people you love and trust really go a long way. Having great support people makes me better able to support Nicholas. I can’t be ok all the time any more that my boy can. Maybe this time we both had to reach out for help in our own way. But the important thing is that we reached out.
Nicholas had a follow-up with Dr. Standard on Monday and everything looked good. He is bending a little more every day and he has not been down at all in the last few days. I am just so grateful that he is healing both inside his knee and inside his heart as well. Maybe being older for this surgery brought home the reality of fh. He knows he has a few more surgeries on the horizon. It is a lot for a six and a half-year old boy to take in. Heck it’s a lot for a thirty year old mommy to take in. But I am healing too and back to feeling that it will all be ok because we have the support of friends and family, the support of the RIAO staff (being comfortable with everyone and knowing they know and care for Nicholas means the world to me) and we have Dr. Standard to do the physical fixing and talk me down from my crazy moments every now and again. All in all we are blessed and I am hopeful.