Tuesday, April 13, 2010

He made it

I wrote this post yesterday, but had trouble with the photo. Ben continues to do well today although he's already asking when he can get "up" and unfortunately that won't be for six weeks! He still has an epidural infusion which is keeping him pain-free and an IV, which he can't wait to be rid of. He was able to sit in a reclining chair for a while and had some pizza tonight.

He made it

My son Ben had his hip and knee surgery today and I'm very grateful to be on this side of it! Here's a picture of him after he was taken from recovery up to the room he'll be in for a few days.

I wrote about how anxious I was before this surgery and many of you sent kind wishes, prayers and encouragement. Thank you for your support!

Ben was receiving excellent pain medication (an epidural) when I left tonight and he was very mellow and comfortable and enjoying watching movies on his portable DVD player (D'Arcy is staying with him). He has a large cast around his trunk (I call it "armor") and a mix of cast and bandaging on his leg that's huge. It was overwhelming to see him in the recovery room because he was also catheterized, which I didn't expect, and had so many wires and leads. Apparently he got very cold during the surgery so they had him under what looked like a giant inflatable mattress that was heated. When we first came to his bed, we couldn't see his head.

Surprisingly, Ben's biggest concern in recovery was whether he could go downstairs to the playroom to use the computer and what he was having for dinner (unfortunately, nothing but clear fluids!) He's also anxious about when the catheter can come out and when he can go home (hopefully Friday).

The day was challenging early on when Ben's surgery was delayed two hours. It wasn't a big deal for Ben, who was absorbed with video games, but it was hard for us old folks.

When it was our turn, I accompanied Ben into the operating room to be put to sleep. It was terrifying for both of us. Ben's always gone on his own in the past, but when he had a recent CAT scan, I was allowed to rub his back while he inhaled the anesthetic medication through a mask. I've never been in an OR before and I was taken aback by how massive it was, the imposing lights, the technology, and all of the frightening "materials" laid out waiting. Ben was scared and refused to get out of his wheelchair. We negotiated that I would bring him a surprise when he woke up later. We went to pick him up and transfer him to the bed and the anesthetist accidentally banged his head with her stethoscope. Unlike the CAT scan folks, who took time with Ben and showed him all the equipment first and cheered him on, she pulled the mask out from behind his head without showing it to him. Of course he balked. I tried putting the mask on Ponda Babba, his favourite Star Wars character (wearing the orange jacket in photo above), but the staff weren't patient and placed it on Ben's face. He resisted and it was horrible to force him to inhale while he shook his head and thrashed around. When he passed out we lay him down and I bent over to kiss his cheek and breathed in the foul smell of the anesthetic. They took his hospital clothes off and it was wrenching to leave him lying there so vulnerable.

I wonder why they aren't able to put children to sleep in a "safe" room and then take them to the OR? So much is done to make the rest of the hospital child-friendly, but it's cancelled out by the trauma of the OR.

The operation took about five hours and the surgeon was pleased with how it went. They removed the benign bony growths, called exostoses, and repositioned and realigned the hip that wasn't growing properly because of the mass inside. The doctor was a very caring person and reassured us that things had gone well.

The medical fellow who spoke to us in the waiting room said dozens of exostoses all over Ben's body showed up on the CAT scan. It's possible the ones they removed today will grow back. However, hopefully that won't be in a matter of months, but years.

The nurses in the recovery room and on the unit were professional, skilled and compassionate.

Thank you so much for all of your well wishes. They are truly appreciated!


I'm glad Ben came through the surgery well and is in good spirits. The OR does sound traumatic. Our daughter always gets a choice of getting the initial anesthetic via IV or mask and she always chooses IV b/c the mask is frightening and smelly. It does sound like the OR staff was not as accommodating as they could have been. I'm sorry it was so traumatic for him and you. Best wishes to you and your son!

Thank you Ellen -- and thank you for all your tips on the spica casts. Does that mean that your daughter has her IV and is asleep before she goes into the OR? Or is she given the IV in the OR? (e.g. does she see the OR)

Unfortunately, Ben has an aversion to IVs. However, after yesterday I think the IV would have to be preferable! It makes me think of the more than dozen times when I haven't been in the OR with him and I wonder what happened?!

Thanks so much for your support!

It is disappointing that a hospital dedicated to the care of children and children only, would not have the step of making the child comfortable mastered! This seems like an obvious priority. When my daughter had dental surgery in a dentists office, they took more time to show her the equipment and make her aware and comfortable with what was going to happen. It sounds like Ben will handle things in stride. It is you that I am concerned about. Seeing your child in pain or discomfort is absolutely one of the hardest things to deal with. It is great that you have the support of your blog followers to give you a virtual hand to hold.

Wow. I agree. There should be a safe room for children and parents to transition from!

I admire Ben's strength. Children are amazing, aren't they? I think Ben may need his own laptop! LOL!

I am very happy to read your update and to "see" Ben "on the other side", too!

Thanks everyone for your support. Unfortunately, Ben had a very rough 24 hours. His epidural line fell out during the night, but they didn't realize it, so he went from massive, continual pain meds to nothing. He was inconsolable and given morphine, but it didn't help. When the pain team finally came at 10 this morning he was switched to a narcotic, which worked. His catheter was taken out this morning but he was unable to pee 10 hours later, so they had to put it back in. They had problems getting it in and D'Arcy had to hold Ben down on the bed while he screamed and cried until they finally gave up after 20 minutes. We were wrecks! They sent the urologist up and he put freezing gel in and this time it went in okay. I asked why they didn't always use the freezing gel and the nurse said only 2 of every 10 patients have a problem.

He was finally comfortable again tonight.

He won't be coming home tomorrow and things are going to be more involved than imagined. His body cast makes it really hard to carry him -- he needs 2 people to be moved. And he also has to be repositioned frequently -- he began to get a pressure sore on his heel.

I think yesterday was too good to be true.

Thanks for all of your kind wishes and encouragement. They mean so much!! Hopefully tomorrow will be a better day.

Louise I was so glad to read that the surgery is over, but am so sorry things have not been going well since.

I have similar issues with Julia being stressed when people are rushed. It is so hard on the family, I wish they would do better.


Thanks for writing Lisa. You will have to do a guest blog for us sometime!