Monday, April 6, 2009

Is it or isn't it?

Josh was amazing on Thursday after his procedure. His eyes looked really clear and controlled.

Since there wasn't a bed available in Joshy's room, the social worker got me a room for the night in the Parents Hostel.

On Friday, Josh looked okay, but not as "bright" as the previous day. He was receiving a (background) infusion of Fentanyl, and bolus amounts as well if we thought he was in pain. Fentanyl, it is said, is 100 times stronger than morphine!

Josh was moved back to the original ward he was in on Friday afternoon, but in a different room to the previous one. I came back to the hospital (with the other kids) around 6pm, and the first thing I noticed was the lack of light. The other thing noticed was that Joey's left shoulder appeared to be in an awkward position. There were 2 nurses around Josh, and John as well, and they were trying to ascertain if there was something wrong. Since Josh normally has a jammie top on, it did look a bit out, but I thought perhaps he was just stiffer than normal.

Later on, when the physio came to do chest physio (patting), I was talking to her about positioning Josh properly because his head keeps going to the right, and his neck looked tense, and I mentioned our concern about his shoulder. As she was looking at him, I suddenly asked "is his shoulder dislocated?" and she said, "yeh, that's what I'm thinking."

So, that started the chain of events that lead to bolus amounts of fentanyl (given whenever we thought he was in pain, or for whenever we repositioned him), x-rays, and eventually, today, a CT scan, along with numerous visits from doctors and medical people both in relation to Joey's shoulder, and his overall care.

The first lots of x-rays weren't clear enough, which is why the CT scan was requested. Being the weekend, that slowed things down as well. At one point we were told that because we were not exactly sure when or how this dislocation occurred, that perhaps it was caused by a spasm, and also because Josh has such high tone (stiffness) especially in his arms, that that may have cause the shoulder to pop. It was suggested that one option could be to pop it back, and if it popped again, rather than extensive invasive surgery, to leave it, that it may hurt for a period, but that would cease after a period, and he'd get used to it. No pun intended, but that did not sit well with us.

We were not happy that it took (what added up to) 3 days before a conclusion and approach was reached regarding his shoulder. Finally, after three orthopedic surgeons looked at all the scans, they decided that Joeys should is in fact NOT dislocated, but what they call sub laxation.

We had to jump up and down a little, but at least we know now what it is (or rather, what it's not).


Peter said...

Hi, I look at this site for updates everyday to see how your little boy is doing.
I really hope things get easier for him and your family now he has had his operation.
I don't know any of you but my heart breaks when I think and read about you and what you are going through. You are amazing and I can only hope I could be half as strong as you guys.

Anonymous said...

Hello. I am the person who left you the message about my eyes not leaving my kids in the pool now. I have always been vigilant about pool safety but your message just makes me realise that it CAN happen to anyone.

We all hear stories in the news about toddler drownings or near drownings and our hearts break, but unfortunately we forget. Unless it has happened to someone close to you, you cannot even begin to comprehend the changes and challenges that now face the family that has been effected. You have allowed people like me to understand some of what you are now going through. I cannot begin to tell you the effect this has had on me. If only everyone could read your blog.

The picture of Joshua after his operation is just beautiful. Thank you for sharing it.

Sending my very best wishes for Joshua and your entire family.


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