Wednesday was going to be a big day, we just didn't anticipate how big it really would be. It had finally come to the morning where Jess' parents were going to leave which we weren't really looking forward to but it had to happen at some point. Martin and Jan are the kind of people who will bend over backwards to help people in any way they possibly can and so they had been somewhat of a lifeline for us through the ups and downs of the past two weeks. Every night they would have dinner prepared for us so we wouldn't have to cook, they would occasionally clean our unit, would go grocery shopping for us, drive us anywhere we needed to go and of course they would be there for all the good times and the bad. We were going to miss having them around. Our picture of how it would all go is that they would maybe sneak in a quick hold of Riley, we would say our goodbyes, maybe shed a few tears and then they would begin their long journey back to Mount Isa.
Instead what happened was we got a call at 6:30am from the PICU. Normally they say to you that they will only call you if something potentially bad is happening. So you dread looking at your phone and seeing "Private Number" ringing and you hope that it's not the PICU. On the other end of the line was Riley's Nurse for the night who let us know that she had developed a temperature and her oxygen saturation levels had dropped significantly. We got to the hospital as quick as we could and found all the doctors trying to pinpoint what exactly was going on with her. They thought it could be an infection but couldn't find anything specific. In the midst of this, Riley's grandparents show up and say their goodbyes. Not exactly the way we wanted them to leave. We chalked Riley's behaviour up to one of two things; either she really didn't want her grandparents to leave or she really just does not want to get out of the PICU no matter how much her Mummy and Daddy would like her to.
Her behaviour maybe wasn't a complete surprise as her left lung partially collapsed earlier in the week and her vitals just never seemed to hit the spot everyone needed it to. Soon they scanned her heart and saw extra fluid surrounding it. They made a plan to schedule her in for surgery to remove it and then put in a chest drain once again. That also meant the ventilator was going to go back in.
We could not believe that this was happening. We expected that Riley would just get to recover then have her next surgery in May. This was by no means as risky or complicated as her surgery last week but it was still disheartening to have to put your child through all of this again.
We spent our afternoon once again sitting in the Parents lounge trying to waste time and waiting for Riley to come back from surgery. It is surprisingly easy to get your mind off of it all when you know that it will take a certain amount of time and you can't do anything about it. It starts to get difficult when it takes longer than you thought. We have learned that when a doctor says something will be an hour and a half, just add an extra hour onto it. So after much waiting, Riley returned and was doing well. They had put back in a chest drain (that hopefully will be removed sometime soon) and suctioned out the fluid. They also changed her IV access; they took out her femoral line (the one located in her thigh) because it had a small clot on it and now its located in her neck. To be honest I preferred it not being in her neck but sometime in the future when she comes off all her medications they will take it out.
Today she has been doing better, her vitals are looking more positive than before. Our hope is that she comes off the ventilator again so she can be more comfortable and that the chest drain does what it needs to do so we can move onto the next stage. Oh and our biggest hope: No more surprise Surgeries!
Instead what happened was we got a call at 6:30am from the PICU. Normally they say to you that they will only call you if something potentially bad is happening. So you dread looking at your phone and seeing "Private Number" ringing and you hope that it's not the PICU. On the other end of the line was Riley's Nurse for the night who let us know that she had developed a temperature and her oxygen saturation levels had dropped significantly. We got to the hospital as quick as we could and found all the doctors trying to pinpoint what exactly was going on with her. They thought it could be an infection but couldn't find anything specific. In the midst of this, Riley's grandparents show up and say their goodbyes. Not exactly the way we wanted them to leave. We chalked Riley's behaviour up to one of two things; either she really didn't want her grandparents to leave or she really just does not want to get out of the PICU no matter how much her Mummy and Daddy would like her to.
Her behaviour maybe wasn't a complete surprise as her left lung partially collapsed earlier in the week and her vitals just never seemed to hit the spot everyone needed it to. Soon they scanned her heart and saw extra fluid surrounding it. They made a plan to schedule her in for surgery to remove it and then put in a chest drain once again. That also meant the ventilator was going to go back in.
We could not believe that this was happening. We expected that Riley would just get to recover then have her next surgery in May. This was by no means as risky or complicated as her surgery last week but it was still disheartening to have to put your child through all of this again.
We spent our afternoon once again sitting in the Parents lounge trying to waste time and waiting for Riley to come back from surgery. It is surprisingly easy to get your mind off of it all when you know that it will take a certain amount of time and you can't do anything about it. It starts to get difficult when it takes longer than you thought. We have learned that when a doctor says something will be an hour and a half, just add an extra hour onto it. So after much waiting, Riley returned and was doing well. They had put back in a chest drain (that hopefully will be removed sometime soon) and suctioned out the fluid. They also changed her IV access; they took out her femoral line (the one located in her thigh) because it had a small clot on it and now its located in her neck. To be honest I preferred it not being in her neck but sometime in the future when she comes off all her medications they will take it out.
Today she has been doing better, her vitals are looking more positive than before. Our hope is that she comes off the ventilator again so she can be more comfortable and that the chest drain does what it needs to do so we can move onto the next stage. Oh and our biggest hope: No more surprise Surgeries!
You guys are always on our minds. Sending love to you all. Can't imagine how hard it was for Jan and Martin to leave you. Fight on, little Riley. Xxoo
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