Well, surgery on Drew’s left leg is complete and was a success. And, I’m excited to report that Drew’s pain level is very well managed and not nearly as intense as it was during the right leg surgery and Drew has been in relatively high spirits. Upon seeing Drew immediately after surgery, it was already obvious that this experience was a vast improvement from last time.
Drew was almost immediately coherent and calm.
Sure, there was some pain but he wasn’t writhing and it didn’t appear to be completely unbearable. He actually requested to be removed from the bed to sit in our laps which it was Nathan and I that were reluctant to oblige him dueour own fears of pain. The
doctors said it would be OK with them, but our own anxieties over his new leg was too much to move him around. During his right leg surgery, he would have never left the bed to go home if he had anything to do with it.
He spent two nights in the hospital and we got to come home Thursday afternoon. He camps out on the living room futon resting against a new reading pillow we got him since it appears his pain is less when he’s sitting. He’s even requested to go outside. Last time, we had to practically drag him outside more than a week after the surgery.
His fixator is pretty gnarly like his last one. I haven’t gotten a chance to count the pins yet but there seems to be about as many as last time, maybe a little fewer. He has one pin that goes between his big toe and the next toe all the way through his foot coming out the back of his heel just under his Achilles tendon! Ouch! But, his leg looks much better post-surgery than his right leg. It’s sitting in an awkward position due to his rotation. His leg is basically on its side leaving his body weight resting on the two large pins at the top of his femur. He’s going to require a lot of cushioning wherever he’s sitting.
We have some heart complications to follow-up on. During his stay, his blood pressure and heart rate were uncomfortably high despite medicine to control it. This is a concern because of the leakage he suffers in his aortic valve. They don’t want his heart to work as hard which can worsen the condition even having dire consequences if left untreated. So, we are following up with a local pediatric cardiologist to find out what next steps are. Next steps can include something as little as just a chest x-ray or ultrasound just to monitor it to, I suppose, surgery to repair it if it were necessary. They say that he has moderate to severe leakage and when you are under as much stress and pain as Drew is, I can imagine that it can exacerbate this condition.
We start physical therapy on Monday which we are not too happy about. Can’t they just give him a break?!? He just has two bones in his leg completely sawed through, large foreign devices drilled into his bones, and you want him to do exercise this soon after surgery? Sometimes, I think that the doctors need to spend some time in the hospital as a patient, then I think they wouldn’t be so quick to order painful and uncomfortable tests and activity. During our stay at the hospital, they wanted to check Drew’s platelets DAILY. He has never had to have daily checks, even when his thrombocytapenia was at its worst. And, did they do it in the afternoon to avoid interrupting critical and healing sleep? NO! At four-freakin’-o’clock in morning! Seriously, they came in to prick him in the finger, this boy who is justifiably scared to death of needles, at 4:00 am disturbing his and our own sleep. Doctors will tell you to get your rest to ensure proper healing but this rule does not apply when in the hospital.
So, now we are doing what we can to get our lives back to normal. I’m questioning more now than ever how I’m going to do this by myself. Drew is impossibly heavy. I don’t know if it’s because I’ve been used to the lightweight brace for so long and forgot how heavy the fixator was or if this fixator is heavier than the last, but it’s going to be nearly impossible for me to get his brace on and off for baths by myself. When it comes to carrying him, just imagine carrying a child with two immobile legs that have no flexibility to bend or move to accommodate a comfortable carrying position. And, the fixator is digging its solid rings into my forearms and the brace’s velcro scratching my other. If I so much as twist his fixator leg, bump it, or don’t situate it just right when setting him down it causes him excruciating pain. And, looking into his pained and desperate face is painful for me! But, I keep reminding myself that it’s going to get better. Last time, it took about 4-5 weeks until I would say that he was basically back to his normal self and as well as Drew has done so far, I’m actually being optimistic and thinking it will be much quicker this time. Will let you know!