Inching along
Written Apr 10, 2012 3:50pm by Amber Gannon Medina
I hate to admit I am a glass half empty gal. It's something I've struggled with my whole life and maybe if I were more positive I would call myself realistic instead.
My experience with Mira has taught me how difficult it is to get through life feeling like the other shoe is always going to drop. However, my way of thinking has been tested time and time again and it's been proved-with Mirabelle, the shoe is either going to drop, has dropped or is in the process of dropping.
These past few weeks of post operative recuperation have been rough. A doctor of Mira's only recently admitted that Mira had all her docs very scared the first few days after her Glenn. I've taken to hating the way doctors only admit this after the fact-it leaves me wondering when they are nervous for her and aren't telling me, and I end up speculating and feeling very suspicious about what they aren't saying. I feel like I need to be a blood hound who sniffs out the doctors' and nurses' fear so I can be prepared for the nasty truths.
Besides the first few days when Mira apparently had everyone scared ( I know I was terrified, now I know everyone was at least concerned) she is inching along. They've been able to extubate her on the first try, take out her two medial stinal (spelling!!?) chest tubes, wean most of her sedation drugs to off or a lot less of what they've been and start her on feeds....and throughout all of this we have been waiting for her oxygen sats to start climbing.
Even with my newly acquired knowledge of oxygen sats, I knew the Glenn was supposed to dramatically improve Mira's numbers. When interstage (time between Norwood and Glenn surgeries) kids' saturations begin to decline, it's usually a sign its time for their Glenn.
For parents of hypoplastic babies, the Glenn seems to be this magic word. We are often promised that life can be normal and that there are very few limitations for our babies post Glenn....for parents whose babies have to spend that interstage period at the hospital, the promise of going home feels like the carrot being dangled in front of your big donkey nose. It's the light at the end of the tunnel.
The Glenn creates a much more stable anatomy because it gets rid of the shunt that's created in the norwood surgery. Once that shunt is gone and the Glenn anatomy gets used to itself, most kids oxygen sats hover in the 80s and some even hit the 90s.
Since Mira's Glenn, her oxygen sats have stuck around the measly upper 60s/lower 70s mark. Yes, of course they have. Mira doesn't like to do anything the easy way.
Day after day, I have been waiting for them to magically start climbing and they have very unmagically stuck in that not so unacceptable range.
I was able to talk to one of Mira's awesome doctors about this and not surprisingly they have already been discussing this very phenomenon. Her doctor predicts that they will wait until Mira has her final 2 tubes taken out and if her sats still fail to rise they will look into a few avenues.
One of the possibilities she brought up was that when Mira's pressures were high, her blood vessels may have diverted themselves so that they emptied below her lungs. It's amazing what your body does in order to survive. However, if this is the case, Mira is losing out in oxygenated blood and this could explain her low oxygen sats.
In order to diagnose this, they would have to perform a cardiac cath (another invasive procedure) and if this is what they found, they would hopefully be able to bunch the frisky vessels together and in essence would tie them off.
This kind of news is not easy for a half empty glass lady and it's especially difficult for a mom who has already waited six months to bring her baby home.
It seems like the hospital stay is marked by various periods. There are the day in day out periods where you go to the hospital every single day and don't even think about it. There are the I can't take it periods where you feel like your head will explode if you have to spend one more minute in that room. There are scary periods where you live half in and half out of your body because of the fear..and then there are the periods of defeat. These seem to be the worst. Strangely, this is where I find myself lately.
It's not a place you can allow yourself to be for very long and really is a very indulgent way to go about things. And yet sometimes, when you've been hoping for the magic "cure" and you realize there probably isn't one, defeat is what you really truly feel. When all you want is for your daughter to be happy (no shots, puking, dressing changes, procedures) for one stinking day, and you realize it probably isn't going to happen fir awhile, you feel incredibly defeated.
Of course, I will have to get myself out of this place at some point. And I realize I am being melodramatic and whiny....I just don't understand why we can't catch a break. I want something to be easy. I want some glimpse of normal life that's on it's way. I want out if this hospital.
My experience with Mira has taught me how difficult it is to get through life feeling like the other shoe is always going to drop. However, my way of thinking has been tested time and time again and it's been proved-with Mirabelle, the shoe is either going to drop, has dropped or is in the process of dropping.
These past few weeks of post operative recuperation have been rough. A doctor of Mira's only recently admitted that Mira had all her docs very scared the first few days after her Glenn. I've taken to hating the way doctors only admit this after the fact-it leaves me wondering when they are nervous for her and aren't telling me, and I end up speculating and feeling very suspicious about what they aren't saying. I feel like I need to be a blood hound who sniffs out the doctors' and nurses' fear so I can be prepared for the nasty truths.
Besides the first few days when Mira apparently had everyone scared ( I know I was terrified, now I know everyone was at least concerned) she is inching along. They've been able to extubate her on the first try, take out her two medial stinal (spelling!!?) chest tubes, wean most of her sedation drugs to off or a lot less of what they've been and start her on feeds....and throughout all of this we have been waiting for her oxygen sats to start climbing.
Even with my newly acquired knowledge of oxygen sats, I knew the Glenn was supposed to dramatically improve Mira's numbers. When interstage (time between Norwood and Glenn surgeries) kids' saturations begin to decline, it's usually a sign its time for their Glenn.
For parents of hypoplastic babies, the Glenn seems to be this magic word. We are often promised that life can be normal and that there are very few limitations for our babies post Glenn....for parents whose babies have to spend that interstage period at the hospital, the promise of going home feels like the carrot being dangled in front of your big donkey nose. It's the light at the end of the tunnel.
The Glenn creates a much more stable anatomy because it gets rid of the shunt that's created in the norwood surgery. Once that shunt is gone and the Glenn anatomy gets used to itself, most kids oxygen sats hover in the 80s and some even hit the 90s.
Since Mira's Glenn, her oxygen sats have stuck around the measly upper 60s/lower 70s mark. Yes, of course they have. Mira doesn't like to do anything the easy way.
Day after day, I have been waiting for them to magically start climbing and they have very unmagically stuck in that not so unacceptable range.
I was able to talk to one of Mira's awesome doctors about this and not surprisingly they have already been discussing this very phenomenon. Her doctor predicts that they will wait until Mira has her final 2 tubes taken out and if her sats still fail to rise they will look into a few avenues.
One of the possibilities she brought up was that when Mira's pressures were high, her blood vessels may have diverted themselves so that they emptied below her lungs. It's amazing what your body does in order to survive. However, if this is the case, Mira is losing out in oxygenated blood and this could explain her low oxygen sats.
In order to diagnose this, they would have to perform a cardiac cath (another invasive procedure) and if this is what they found, they would hopefully be able to bunch the frisky vessels together and in essence would tie them off.
This kind of news is not easy for a half empty glass lady and it's especially difficult for a mom who has already waited six months to bring her baby home.
It seems like the hospital stay is marked by various periods. There are the day in day out periods where you go to the hospital every single day and don't even think about it. There are the I can't take it periods where you feel like your head will explode if you have to spend one more minute in that room. There are scary periods where you live half in and half out of your body because of the fear..and then there are the periods of defeat. These seem to be the worst. Strangely, this is where I find myself lately.
It's not a place you can allow yourself to be for very long and really is a very indulgent way to go about things. And yet sometimes, when you've been hoping for the magic "cure" and you realize there probably isn't one, defeat is what you really truly feel. When all you want is for your daughter to be happy (no shots, puking, dressing changes, procedures) for one stinking day, and you realize it probably isn't going to happen fir awhile, you feel incredibly defeated.
Of course, I will have to get myself out of this place at some point. And I realize I am being melodramatic and whiny....I just don't understand why we can't catch a break. I want something to be easy. I want some glimpse of normal life that's on it's way. I want out if this hospital.
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