No More Surprise Surgeries....that was the last line of the last blog I wrote.
Almost immediately after posting that we got a call from the PICU letting us know that her oxygen saturation levels had dropped again and she wasn't doing well. The doctors unfortunately could not put their finger on the reason for her behaviour. It looked like a doctors convention was taking place around her bedside with everyone putting their two cents in on what it could possibly be. We just sat there patiently waiting for their final conclusion. Eventually we were ushered into the parents interview room where one of the doctors let us know their plan. They intended to have Riley go into Theatre the next morning to do a Cardiac Catheterisation Procedure which involves threading a tube through one of Riley's vessels all the way to the heart to inspect whether something needing to be fixed. What made it worse was when he read through all the potential risks and complications that can occur doing a procedure like this. I know that they are required to tell you that before you sign on the dotted line but it doesn't instill a great deal of confidence in you. Thankfully he kept saying after nearly every one of the points that those things have never happened under his watch. I wasn't very happy that she was going in for another surgery but Jess reiterated to me that "It's not a surgery, it's a procedure". Still invasive though.
The following morning we went through the same old routine; the anesthesiologist comes and gets us to sign on the dotted line so they can sedate her, they pack up all her things and then wheel her out to surgery while somewhere in there we say our quick goodbyes. We seem to be becoming pro's at this after going through it three times in the span of a week and a half. Our hope at the time was that we were not putting her through another painful thing with no reward because after all she has been through quite a lot. When she returned the doctors explained that they found absolutely nothing wrong with her previous heart surgery which was a positive. They said that everything they did surgically with the norwood procedure was perfect. They now needed to stop trying to resolve the problem through surgeries and medications. They would just accept her oxygen issues for what it was. The problem with Riley's oxygen saturation levels is that a normal healthy kid will reach 100% oxygen saturation, a kid with a heart condition they can accept 75-85% but in Riley's case she seems to only be able to hit 65-80%. Add to that when she gets upset her levels drop to the 50's. So our big concern was that this wouldn't affect her development. However they assured us that this may resolve itself with time as she continues to grow.
Across the weekend we experienced a mixed bag with Riley with some good times and not so good times. Plus she is developing quite the reputation for being a cranky baby and I don't blame her. Every time she gets woken up by the doctors it is never for anything pleasant. Take for instance yesterday, she had two physio appointments (or as I like to call it "Her daily beating"), they put a high flow oxygen mask on her to inflate her lung (yep the right lung keeps collapsing), they removed a line from her arm and her neck, they placed a drip in her hand and they made it so that her thighs had ports that they could inject into. That is just in one day. Add to that the difficulty of if she gets upset her sats drop to levels that aren't good BUT you need to do these things in order for her to get better. It's a necessary evil unfortunately. One thing she loves though is sugar water; they give the babies sucrose to calm them down and she cannot get enough of it. Here's hoping she doesn't get an addiction to junk food when she grows up (pot calling the kettle black right there).
But besides her somewhat eventful past few days she continues to do well. They have taken her off many of her medications and we are only left with oxygen issues to sort out. Once her lung has resolved and she remains relatively stable with her stats then we should be on track to head to the cardiac ward. We cannot tell you how excited we are to progress to that stage after experiencing the ups and downs of the past couple of weeks. Fingers crossed our stay here in the PICU doesn't last for too much longer.
Almost immediately after posting that we got a call from the PICU letting us know that her oxygen saturation levels had dropped again and she wasn't doing well. The doctors unfortunately could not put their finger on the reason for her behaviour. It looked like a doctors convention was taking place around her bedside with everyone putting their two cents in on what it could possibly be. We just sat there patiently waiting for their final conclusion. Eventually we were ushered into the parents interview room where one of the doctors let us know their plan. They intended to have Riley go into Theatre the next morning to do a Cardiac Catheterisation Procedure which involves threading a tube through one of Riley's vessels all the way to the heart to inspect whether something needing to be fixed. What made it worse was when he read through all the potential risks and complications that can occur doing a procedure like this. I know that they are required to tell you that before you sign on the dotted line but it doesn't instill a great deal of confidence in you. Thankfully he kept saying after nearly every one of the points that those things have never happened under his watch. I wasn't very happy that she was going in for another surgery but Jess reiterated to me that "It's not a surgery, it's a procedure". Still invasive though.
The following morning we went through the same old routine; the anesthesiologist comes and gets us to sign on the dotted line so they can sedate her, they pack up all her things and then wheel her out to surgery while somewhere in there we say our quick goodbyes. We seem to be becoming pro's at this after going through it three times in the span of a week and a half. Our hope at the time was that we were not putting her through another painful thing with no reward because after all she has been through quite a lot. When she returned the doctors explained that they found absolutely nothing wrong with her previous heart surgery which was a positive. They said that everything they did surgically with the norwood procedure was perfect. They now needed to stop trying to resolve the problem through surgeries and medications. They would just accept her oxygen issues for what it was. The problem with Riley's oxygen saturation levels is that a normal healthy kid will reach 100% oxygen saturation, a kid with a heart condition they can accept 75-85% but in Riley's case she seems to only be able to hit 65-80%. Add to that when she gets upset her levels drop to the 50's. So our big concern was that this wouldn't affect her development. However they assured us that this may resolve itself with time as she continues to grow.
Across the weekend we experienced a mixed bag with Riley with some good times and not so good times. Plus she is developing quite the reputation for being a cranky baby and I don't blame her. Every time she gets woken up by the doctors it is never for anything pleasant. Take for instance yesterday, she had two physio appointments (or as I like to call it "Her daily beating"), they put a high flow oxygen mask on her to inflate her lung (yep the right lung keeps collapsing), they removed a line from her arm and her neck, they placed a drip in her hand and they made it so that her thighs had ports that they could inject into. That is just in one day. Add to that the difficulty of if she gets upset her sats drop to levels that aren't good BUT you need to do these things in order for her to get better. It's a necessary evil unfortunately. One thing she loves though is sugar water; they give the babies sucrose to calm them down and she cannot get enough of it. Here's hoping she doesn't get an addiction to junk food when she grows up (pot calling the kettle black right there).
But besides her somewhat eventful past few days she continues to do well. They have taken her off many of her medications and we are only left with oxygen issues to sort out. Once her lung has resolved and she remains relatively stable with her stats then we should be on track to head to the cardiac ward. We cannot tell you how excited we are to progress to that stage after experiencing the ups and downs of the past couple of weeks. Fingers crossed our stay here in the PICU doesn't last for too much longer.
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