Parenthood can be unpredictable at the best of times but being a parent of a child with a congenital heart defect can be downright confusing. We have noticed a trend with our little girl that can drive us a little bonkers. See Riley has a habit of defying expectations that are put upon her and then once she has achieved it, she decides that she wants to take a break and allows herself to slip.
We had a win on Thursday when her stent was removed and her chest was closed. We celebrated. Following that we had a fairly good day on Friday with all the doctors stepping in to assure us that Riley would be all set to have her ventilator removed on Saturday. But what happened next? Yep you guessed it, she decided to take a break from progressing in a spectacular way. Her oxygen levels started to drop and her nurse began to take notice because the figures were beginning to become worrying. After some assessment they realized that part of her right lung had collapsed. They couldn't really explain it but had many theories; maybe it was fluid build-up or could it be because of all the suction they had done. They didn't really end up with a concrete answer but managed to rectify it anyway. The doctors had decided that Riley needed 24 hours for her lung to re-establish and she was nowhere near having her ventilator removed. In fact it would probably be another week in their eyes.
One thing we have learned for our sanity is to not get too caught up in times and dates. When a doctor says "Maybe Tomorrow", we hear the word "Maybe" far stronger than the "Tomorrow" because things change so quickly here. But I must admit that yesterday's setback got to me. It wasn't necessarily that Riley didn't get her ventilator out, it was more that I just wanted her to be stable. The way we seem to describe it is that Riley will take two steps forward then one step back. You are still ahead but just not as far ahead as you were. Thankfully Jess and I seem to never have a down day at the same time, if I am down then Jess is up. Or when Jess is down then I am up. So we are always each others cheerleader encouraging one another through difficult times. Nobody said this would be easy and even though we are full of faith for good results, we are allowed to take a moment to mope every now and then.
When we checked back in on her later she had improved a little and we just prayed that it would continue. Can you guess what happened next? Yep she had her ventilator removed this morning. She began breathing well enough on her own and didn't need it anymore. The doctor spoke to Jess and said "You must have a lot of people singing for Riley" (apparently that's a saying?) and she replied "No we have a lot of people PRAYING for Riley". Once again Riley claimed her all-star status. This lead to our first hold of her since before she had her surgery. Pure bliss. We have had a week of watching her be really uncomfortable and we can't really do much to console her so it's a relief to get back to this stage.
Discussions started about what happens next. Everyone was impressed with her progress yet again and the Doctors began saying if she stayed this way then she could move from PICU to the Ward tomorrow. We thought that was a bit generous and no sooner had he said that; her blood pressure dropped. Not the end of the world in the grand scheme of things but it does halt progress. Two steps forward, one step back.
Even though I find her fluctuations confusing especially after each progression, I have to put it in perspective. She really is doing fantastic. We have had conversations with different families on the ward who have been through a much rougher journey than we have. One couple have had their beautiful little boy on the ward for the past three weeks. Riley had her ventilator removed within six days of surgery, their boy has taken much much longer for it to happen. There is another family that have been at the PICU for a couple of weeks already and don't think they will move for another month. As much as we can be confused by the instability, we are truly blessed and grateful that Riley has fought through much harder than anyone at the hospital has expected. We love our little girl, she is always full of surprises both good and sometimes bad but that's what keeps life interesting.
Thank you everyone who prays for Riley, we know it's making a difference!
We had a win on Thursday when her stent was removed and her chest was closed. We celebrated. Following that we had a fairly good day on Friday with all the doctors stepping in to assure us that Riley would be all set to have her ventilator removed on Saturday. But what happened next? Yep you guessed it, she decided to take a break from progressing in a spectacular way. Her oxygen levels started to drop and her nurse began to take notice because the figures were beginning to become worrying. After some assessment they realized that part of her right lung had collapsed. They couldn't really explain it but had many theories; maybe it was fluid build-up or could it be because of all the suction they had done. They didn't really end up with a concrete answer but managed to rectify it anyway. The doctors had decided that Riley needed 24 hours for her lung to re-establish and she was nowhere near having her ventilator removed. In fact it would probably be another week in their eyes.
One thing we have learned for our sanity is to not get too caught up in times and dates. When a doctor says "Maybe Tomorrow", we hear the word "Maybe" far stronger than the "Tomorrow" because things change so quickly here. But I must admit that yesterday's setback got to me. It wasn't necessarily that Riley didn't get her ventilator out, it was more that I just wanted her to be stable. The way we seem to describe it is that Riley will take two steps forward then one step back. You are still ahead but just not as far ahead as you were. Thankfully Jess and I seem to never have a down day at the same time, if I am down then Jess is up. Or when Jess is down then I am up. So we are always each others cheerleader encouraging one another through difficult times. Nobody said this would be easy and even though we are full of faith for good results, we are allowed to take a moment to mope every now and then.
When we checked back in on her later she had improved a little and we just prayed that it would continue. Can you guess what happened next? Yep she had her ventilator removed this morning. She began breathing well enough on her own and didn't need it anymore. The doctor spoke to Jess and said "You must have a lot of people singing for Riley" (apparently that's a saying?) and she replied "No we have a lot of people PRAYING for Riley". Once again Riley claimed her all-star status. This lead to our first hold of her since before she had her surgery. Pure bliss. We have had a week of watching her be really uncomfortable and we can't really do much to console her so it's a relief to get back to this stage.
Discussions started about what happens next. Everyone was impressed with her progress yet again and the Doctors began saying if she stayed this way then she could move from PICU to the Ward tomorrow. We thought that was a bit generous and no sooner had he said that; her blood pressure dropped. Not the end of the world in the grand scheme of things but it does halt progress. Two steps forward, one step back.
Even though I find her fluctuations confusing especially after each progression, I have to put it in perspective. She really is doing fantastic. We have had conversations with different families on the ward who have been through a much rougher journey than we have. One couple have had their beautiful little boy on the ward for the past three weeks. Riley had her ventilator removed within six days of surgery, their boy has taken much much longer for it to happen. There is another family that have been at the PICU for a couple of weeks already and don't think they will move for another month. As much as we can be confused by the instability, we are truly blessed and grateful that Riley has fought through much harder than anyone at the hospital has expected. We love our little girl, she is always full of surprises both good and sometimes bad but that's what keeps life interesting.
Thank you everyone who prays for Riley, we know it's making a difference!
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