Drains, physical therapy and stringy gauze! oh, my!

Apparently I was wrong in thinking we were trapped at Sinai. In speaking with Dr. Standard after we left the hospital it turns out he expected Nick to stay till Friday or Saturday. If I had know that I would not have said that we wanted to leave so fast. Talking with him after surgery is sometimes brief and it is hard for me to keep track of all he has said. I heard it went great and the rest was a blur. In any case it was OK that we left because Nick was doing fine on oral pain meds but it was really hard to get to the point of being able to leave.

Assuming is always a mistake and on Thursday I made one big assumption and it was all wrong. I assumed Dr. Standard’s PA had talked to him about Nicholas specifically. Apparently we did some horrific pt getting out of the bed and walking to the wheel chair for nothing. Nick really didn’t need to be doing that. I also got a prescription for physical therapy that Dr. Standard does not want Nick doing. His exact words “I don’t want anyone bending his knee”.

So it was a communication error. Communication errors are so common but I also feel like I lost my focus a little. I use to keep better track of things. I use to ask more questions. I do trust Dr. Standard’s team but Nick’s situation is unique and was not like the other surgeries, getting the ex fix, removal, eight plate insertion, super knee, in which I bet a lot of things are the same from patient to patient.

We had a rough time with Nick’s drain removal and that was probably in the realm of communication issues too. I did not like the way Nick was spoken to. In fact I was upset enough that I could not say anything for fear I would cry. I just focused on Nick and trying to calm him. When someone seems to be working against you in the calming department that is not easy an easy task. Drain removal usually isn’t a huge painful drama but it was. I know upsetting him couldn’t have been intentional but thats how it felt at the time.

After the drain and iv removal came the walking. I wanted to scream. I hated myself for pushing him. I try to be helpful and not resist letting the hospital staff do what they need to do if it is what Nick needs but then to hear it wasn’t was really hard. I know guilt is a waste of time at this point but I hate that I let Nick suffer. He was so upset he was screaming and then he had a terrible headache afterward from all the stress. He is still not walking but he does not need to be. He can’t weight bear for a while on his right leg anyway. I’ve talked to Dr. Standard about this discharge day and I know he will address the things that can be addressed but I still feel like it’s on me to be on top of it all. Next time I will simply ask “Is this what Dr. Standard said Nick needs, or needs to do?” Eleven surgeries later I would have thought speaking up would be easy but none of this is easy.

Today I took off the bandages. Oh my goodness this has in the past been the worst thing ever. Seriously some of the worst moments of my life include removing bandages from Nick’s leg. When I told him it was time he said he wanted to take a nap. I let him and figured I would lay down for a little while to calm myself. I know my tension was not going to help the situation. When I woke up Nick was still asleep. When he woke we got started and amazingly there were no tears. A few ouches but no serious upset. It was not easy and some incisions have a little gauze stuck in them but whoever put the stringy gauze directly on those wounds made a mistake. That stringy gauze got us into trouble before when I put it on after the fixator came off. As soon as I saw that there was nothing smooth underneath the huge area of gauze and clear tape it I was upset. I suppose some gauze strings are not the end of the world. Nick cant shower yet but when he can it will be it’s own little drama since he has his huge arm cast and in general the first shower is scary for him. Maybe a nap before hand will help again.

One small issue we have now is a small pimple near one of the incisions. I cant say for sure it is a pimple but it looks like one with a white center. It’s pretty small and does not hurt so our instructions have been to wash it and cover it and if the pain increases start and antibiotic. We don’t have an antibiotic to start but we’ll have to call if we need it. It is a really tiny thing. I don’t like having it covered because then I cant see if it has changed. I worry that what looks like a tiny bit of pus inside will get inside the incision and cause a serious infection. After all Nick has been though that would be too much.

I guess it is already too much. Broken leg and broken arm are a bad combination. Nick is upset and I don’t blame him. He’s really not getting to have a summer. He cant run or even walk outside right now. He can’t swim!!! What is summer with out swimming. I’ll tell you what summer is without swimming. It’s sitting in your house in the air conditioning because it is too darn hot to do anything else outside. One positive point I had to make was the Nick’s summer isnt over when school starts like every other kid. Our summer can keep going because we’ll be homeschooling! I will find an indoor pool if Nick wants to make up for lost swim time.

So while I preach all the time that Nick lives his life as he wants without limitations that is currently not the case but in a few weeks it will be over. Well maybe more than a few but still when this is done Nick will have his long straight leg and his arm will be back to normal. Interestingly this cast is itching Nick a lot less than the other one did. Please pray to whatever god you believe in that Nick will be able to get a short waterproof cast on August 6th when we go back to the RIAO. If he does we will have no trouble swimming on vacation at the end of August. We will cram so much fun into that one week! Glenbrook (our annual family vacation) is our chance to redeem our summer. Here’s hoping we can!