As I was waiting in the ICU parent lounge for Mya to get settled into her room the couple eating their cafeteria dinner at the big round table caught my attention. It was obvious they had been here before. We got to talking about how the second you are back it feels like you were just here, like those months you had at home between admissions sort of fade away. Their parting words as they tossed their remaining fries and headed back to their child were this: "This is our 5th ICU stay, we are hoping it is our last". And that is when I knew that our situations were quite a bit different. Because I was sitting there hoping it wasn't.
In retrospect we have been noticing some changes in Mya's health. About every third week she spends a few days requiring oxygen during the day and nestled in there is a day where she cannot come off bipap. She never really seems sick but does have increased secretions she is working to clear, so we chalk it up to illness. Most nights she has periods where she alarms for desaturations and requires numerous readjustments and breathing treatments to get her to the morning. When I hold her for our nightly cuddle she immediately falls asleep like she has been waiting all day for my shoulder. The range for how she needs to be positioned to avoid obstructing her airway has seemed to be shrinking. Her oxygen sats are all over the place and we have just become accustomed to being satisfied with lower numbers. These things happen slowly and so bigger issues can kind of creep up. It seems that bigger issues have been creeping up.
On Friday I sent her to school grumpy. She came home grumpy. Mya doesn't typically complain so I suspected something was up. She gave me her 'please come hold me so I can fall asleep cry' and so as soon as I got Ella and Clayton settled with lunch I went to give her her wish. As she nestled into my shoulder and instantly fell asleep our cheeks touched. She was ice cold. I got her under a blanket and pulled out the pulse ox monitor to confirm that she needed some help. She was barely able to reach 85 - 90% on 3 liters and her temperature wasn't reading on our digital thermometer, so off we went.
In the ER they told me they thought it was pneumonia, but the story in the ICU quickly changed. All of her labs came back normal. Aside from a low cortisol level there is really nothing to fix. She is not able to use her full lung capacity. Her lower right lobe was completely dark from atelectasis. After a day on bipap it opened up again, but her tone is limiting her ability to maintain her airway. Her shallow breathing isn't enough to keep her sats up. She just can't breathe well enough to support herself.
We don't really know what this means going forward. She did decently well coming off of Bipap today after a number of breathing treatments. We were able to wean her oxygen down to 4 liters. If she continues to do well when she comes off of bipap tomorrow morning we could take her home on oxygen. Maybe things will continue as they have been for a while with periods of health and alertness and weeks of a sort of recharge with extra support. The hypothermia is a reaction to the stress her body is under and the inability of her unique brain to properly regulate. Maybe now we will know what to watch for and can have a plan to help her. Or maybe she will go downhill quickly. Our first goal is to become as informed as we can be and then to get her home.
Sunday, March 29, 2015
vacation rewind
Finally hitting publish...so if you are checking in for updates on her latest health issues, more to come.
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Our vacation was on the fence of Mya's health. 45 hours before we left we were still undecided if it would happen because she was fighting some congestion. She hadn't needed daytime oxygen for the week, and this was going to be the deciding factor. We told the kids we were going to visit Aunt Laurie and I started packing the day before decently sure we were going and then sent her to school the morning of thinking we were going to cancel the whole thing. I was told by uninvolved parties that this indecision was causing them anxiety, but I was choosing to think of it as adventure. We got the green light at bus drop off by way of a decent report from her nurse and 5 hours later off we went facing 25 hours of travel including a late-night hotel stop. We packed most of her bedroom, including her oxygen concentrator but left her oxygen tanks and the tank filler at home because were were tight on room in the van. Also if she needed them during the 14 hours of driving time we were in trouble anyway as they, at the very most, bought her 6 hours of air...yes, I knew this was a bad call, but we went with that plan. Fast forward a few days and we learned that when traveling if your child has a series of bad breathing days the process to rent temporary tanks to get you home is super seamless. Mya spent most of the trip tied to oxygen and bipap in our temporary home but we took turns getting out with the kids and enjoying a new city and a new environment. We also spent a lot of time at the house enjoying family and sunny backyard days. The oxygen tubing stretched almost to the back patio and most certainly to the front porch and so as she was feeling less rotten she did get to spend some time outdoors. I got to read in a hammock. The kids barely noticed the disruption, which sort of makes sense as we spend so much time at home tag-teaming in the same way. Such is this life. To top off the trip when we pulled onto the highway to head for home her pulse-ox probe broke so we were flying blind all the way on how she was breathing. But we made it! Next trip we will pack more equipment.
Such is this life. This is a little different than 'such is life'. In this life quite often everything doesn't go as we hoped. Not in the way that all kids get sick and that is occasionally happens at inconvenient times, but in the way that her health seems to be poor more than it is good these days. Quite honestly we don't even think she was sick, she just couldn't breathe. And we don't know if that will change, or if it is here to stay, or if it will progress. We were one bad turn from checking into an unfamiliar hospital hundreds of miles from home. I was calculating for one whole day what that would look like. Would the other kids fly home with dad? Who would watch them in my absence? How many mom friends with days at home could I stack together to get us through and for how long would we need to do that? But when we made the call to take the trip we knew that this was a possibility. We went anyway. We even went anyway without the band aid of small oxygen tanks because sort of solving the problem wasn't going to be good enough. And when she got worse instead of better we had a really great time anyway. We can't not live. My heart hurts that she misses out on so much because of her health or her alertness but we are doing the best that we can. We are fitting life in where we can, for her and for us. Sometimes that isn't ideal but it is all that we can do.
We have some decisions to make about her care. Some of them we know are coming soon, such as if we want a nurse here for her while we sleep, or while we go about our day. And some of them we suspect are coming someday if this progresses, like how much we want to do to keep her with us. We can still pretend that someday is this far off uncertainty we may never face. It is just getting harder and harder to do so. I knew all along that the home health agency would be there to bail us out with oxygen if we needed them. I also knew there would be children's hospitals along our drive and a really good option at our destination. We were prepared for several scenarios but I am thankful for the parts we didn't need. I am thankful we took the trip. Thank you to our hostess for allowing us to turn your living room into the Mya zone. And thank you for showing us a great time.
.
------------
Our vacation was on the fence of Mya's health. 45 hours before we left we were still undecided if it would happen because she was fighting some congestion. She hadn't needed daytime oxygen for the week, and this was going to be the deciding factor. We told the kids we were going to visit Aunt Laurie and I started packing the day before decently sure we were going and then sent her to school the morning of thinking we were going to cancel the whole thing. I was told by uninvolved parties that this indecision was causing them anxiety, but I was choosing to think of it as adventure. We got the green light at bus drop off by way of a decent report from her nurse and 5 hours later off we went facing 25 hours of travel including a late-night hotel stop. We packed most of her bedroom, including her oxygen concentrator but left her oxygen tanks and the tank filler at home because were were tight on room in the van. Also if she needed them during the 14 hours of driving time we were in trouble anyway as they, at the very most, bought her 6 hours of air...yes, I knew this was a bad call, but we went with that plan. Fast forward a few days and we learned that when traveling if your child has a series of bad breathing days the process to rent temporary tanks to get you home is super seamless. Mya spent most of the trip tied to oxygen and bipap in our temporary home but we took turns getting out with the kids and enjoying a new city and a new environment. We also spent a lot of time at the house enjoying family and sunny backyard days. The oxygen tubing stretched almost to the back patio and most certainly to the front porch and so as she was feeling less rotten she did get to spend some time outdoors. I got to read in a hammock. The kids barely noticed the disruption, which sort of makes sense as we spend so much time at home tag-teaming in the same way. Such is this life. To top off the trip when we pulled onto the highway to head for home her pulse-ox probe broke so we were flying blind all the way on how she was breathing. But we made it! Next trip we will pack more equipment.
Such is this life. This is a little different than 'such is life'. In this life quite often everything doesn't go as we hoped. Not in the way that all kids get sick and that is occasionally happens at inconvenient times, but in the way that her health seems to be poor more than it is good these days. Quite honestly we don't even think she was sick, she just couldn't breathe. And we don't know if that will change, or if it is here to stay, or if it will progress. We were one bad turn from checking into an unfamiliar hospital hundreds of miles from home. I was calculating for one whole day what that would look like. Would the other kids fly home with dad? Who would watch them in my absence? How many mom friends with days at home could I stack together to get us through and for how long would we need to do that? But when we made the call to take the trip we knew that this was a possibility. We went anyway. We even went anyway without the band aid of small oxygen tanks because sort of solving the problem wasn't going to be good enough. And when she got worse instead of better we had a really great time anyway. We can't not live. My heart hurts that she misses out on so much because of her health or her alertness but we are doing the best that we can. We are fitting life in where we can, for her and for us. Sometimes that isn't ideal but it is all that we can do.
We have some decisions to make about her care. Some of them we know are coming soon, such as if we want a nurse here for her while we sleep, or while we go about our day. And some of them we suspect are coming someday if this progresses, like how much we want to do to keep her with us. We can still pretend that someday is this far off uncertainty we may never face. It is just getting harder and harder to do so. I knew all along that the home health agency would be there to bail us out with oxygen if we needed them. I also knew there would be children's hospitals along our drive and a really good option at our destination. We were prepared for several scenarios but I am thankful for the parts we didn't need. I am thankful we took the trip. Thank you to our hostess for allowing us to turn your living room into the Mya zone. And thank you for showing us a great time.
.
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