The last 24 hours have been enlightening, scary, and filled the
entire specretum of feelings. Izzy has maintained the rollercoaster
we have come to know since her birth. There was a point yesterday
(a very brief point yesterday) where she was able to maintain
herself on 2 liters oxygen. There was a point today where she
required 5 liters of oxygen and she was still working hard to
breathe and her sats were low 90s. Now, she is at 4.5 liters and
maintaining well in her sleep. The problem is that she has NO
reserves. In sleep, she can do well because she doess not work on
anything, but staying alive. Awake, she is doing so much more. Add
on top of that, that while she sleeps, she takes shallow breaths,
so her air sacs don't fill that much, so when she wakes up, those
sacs are stuck together. For you and me, we take a large breath,
such a yawn, and the sacs get reinflated and open up wide. Izzy
doesn't have the extra energy/reserves to fill those sacs up, so
they stay flatter, making it even more difficult to keep her
going.
We are waiting and seeing what happens with this virus as we have been instructed, but it is very hard. We know now that she does not have RSV, but parainfluenza (so do Phin and I). It doesn't mean much because it is just as virulent a virus as RSV, damages the lungs like RSV, and can be just as deadly to a child like McKenzie as RSV. Luckily, we got her to the ER in time and she has been monitored closely. Obviously, she is not out of the woods yet, but we are at least 5 days into this stay. Could we be halfway there? Her last two major viruses like this had her in for 10 days each.
These last two hospital stays have made me question all of the choices we have made. Should McKenzie be in day care? She didn't have this many problems a year ago and she was there, but she wasn't as mobile, nor did she play with anything. We can't afford to stay home with her, so is it really a choice? If she wasn't in day care, would she be any better? Not likely, since Phin has had every illness she has had and usually preceded her (i.e., gave it to her). Do we lock her in a bubble, keep her from all the other kids (whom she loves), keep her from her brother (her favorite person in the world), and keep her away from life? She is too much of a people person for that. She would be miserable. Not to mention, our house is way too small for that kind of isolation. What would happen once she leaves that bubble? Would she be more sick? Would it be harder on her system? All of these questions are ones Dale and I have been forced to answer from the beginning. These are the questions all parents of kids like Izzy have to face (not to mention parents in general). We made our decision. Izzy is day care. She loves it! She loves Mary and D. She loves seeing and being part of the other kids. She is learning socialization skills. She is learning independence and a ton of other things. She is learning to love and trust other people besides our immediate family. Plus, both Dale and I can work, to keep Izzy insured and to pay for things like crazy expensive hypo-allergenic formula and a mortgage. These are the benefits we love. We knew she would get sick. Did we know she would end up in the hospital this frequently? Did we know the emotional toll it would take watching her struggle to breathe? No, we didn't know the exact extent, but we made a reasoned decision. Many people have questioned whether Dale and I made a wise decision, but we made it. We are living it. We don't know if Izzy is worse off for it and neither does anybody else. Right now, with her in the hospital and so sick, does it seem wrong? YES! But, we can't know if it is wrong. But, we didn't make the decision lightly.
We are determined that Izzy will move past this, that she will be better, and she will have some semblemance of a normal life. Will she end up here again? Probably. We don't want it. Each hospitalization scares us so much! But, the reality is, whether it is next month or when she starts kindergarten, McKenzie will come in contact with viruses. If it becomes a point where Izzy's doctors tell us we must reconsider our decisions or we decide something different must be done, we will look at what is going on and consider the ramifications of all choices. Nobody knows the future, least of all me. I do know that I try my best for my children at all times. Izzy is special, but she is not someone that can be kept down. She has too much fight. We will fight this virus and she will win.
Sorry for the rambling introspection, but this carepage not only keeps you all up to date on Izzy's progress, but it is a cathartic release for me. Hopefully, this answers some questions people have been asking. We know Izzy is vulnerable, but we also know everything else about her, about us, and about our life. We make all decisions based upon the best information available to us. (We did seek input from all of Izzy's specialists before we placed her in day care.) We are doing the best we can, trying to stay above the water. I think we are doing pretty good considering how dire some of these days have looked lately. My parents are the ones keeping Dale and I afloat. Without them, I don't know where we would be. Thank you, Mom and Dad!!!
Melonie
We are waiting and seeing what happens with this virus as we have been instructed, but it is very hard. We know now that she does not have RSV, but parainfluenza (so do Phin and I). It doesn't mean much because it is just as virulent a virus as RSV, damages the lungs like RSV, and can be just as deadly to a child like McKenzie as RSV. Luckily, we got her to the ER in time and she has been monitored closely. Obviously, she is not out of the woods yet, but we are at least 5 days into this stay. Could we be halfway there? Her last two major viruses like this had her in for 10 days each.
These last two hospital stays have made me question all of the choices we have made. Should McKenzie be in day care? She didn't have this many problems a year ago and she was there, but she wasn't as mobile, nor did she play with anything. We can't afford to stay home with her, so is it really a choice? If she wasn't in day care, would she be any better? Not likely, since Phin has had every illness she has had and usually preceded her (i.e., gave it to her). Do we lock her in a bubble, keep her from all the other kids (whom she loves), keep her from her brother (her favorite person in the world), and keep her away from life? She is too much of a people person for that. She would be miserable. Not to mention, our house is way too small for that kind of isolation. What would happen once she leaves that bubble? Would she be more sick? Would it be harder on her system? All of these questions are ones Dale and I have been forced to answer from the beginning. These are the questions all parents of kids like Izzy have to face (not to mention parents in general). We made our decision. Izzy is day care. She loves it! She loves Mary and D. She loves seeing and being part of the other kids. She is learning socialization skills. She is learning independence and a ton of other things. She is learning to love and trust other people besides our immediate family. Plus, both Dale and I can work, to keep Izzy insured and to pay for things like crazy expensive hypo-allergenic formula and a mortgage. These are the benefits we love. We knew she would get sick. Did we know she would end up in the hospital this frequently? Did we know the emotional toll it would take watching her struggle to breathe? No, we didn't know the exact extent, but we made a reasoned decision. Many people have questioned whether Dale and I made a wise decision, but we made it. We are living it. We don't know if Izzy is worse off for it and neither does anybody else. Right now, with her in the hospital and so sick, does it seem wrong? YES! But, we can't know if it is wrong. But, we didn't make the decision lightly.
We are determined that Izzy will move past this, that she will be better, and she will have some semblemance of a normal life. Will she end up here again? Probably. We don't want it. Each hospitalization scares us so much! But, the reality is, whether it is next month or when she starts kindergarten, McKenzie will come in contact with viruses. If it becomes a point where Izzy's doctors tell us we must reconsider our decisions or we decide something different must be done, we will look at what is going on and consider the ramifications of all choices. Nobody knows the future, least of all me. I do know that I try my best for my children at all times. Izzy is special, but she is not someone that can be kept down. She has too much fight. We will fight this virus and she will win.
Sorry for the rambling introspection, but this carepage not only keeps you all up to date on Izzy's progress, but it is a cathartic release for me. Hopefully, this answers some questions people have been asking. We know Izzy is vulnerable, but we also know everything else about her, about us, and about our life. We make all decisions based upon the best information available to us. (We did seek input from all of Izzy's specialists before we placed her in day care.) We are doing the best we can, trying to stay above the water. I think we are doing pretty good considering how dire some of these days have looked lately. My parents are the ones keeping Dale and I afloat. Without them, I don't know where we would be. Thank you, Mom and Dad!!!
Melonie
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