I really wish I could be posting about something fun and frankly mundane, but that is just not where we are in our life at the moment. Lucy is not doing well. She is experiencing intense pain that we just can't, as hard as we have been trying, get under control. Whatever illness that struck our little one, be it an infection or something viral, has set off a firestorm inside her little body thus causing her MAS to flare and her organs to swell. We are currently dosing pain meds every two hours around the clock, in addition to all of the other two dozen or so IV meds that we infuse on a a daily basis. After multiple conversations with the good doc we are hoping today to be able to switch Lucy to a PCA pump of narcotics, this will allow her to receive a continuous infusion of pain meds 24 hours a day.
I have such a difficult time seeing her in pain, and at the same time it is equally as difficult for me to keep pushing so many pain meds into our four year old's body. I have to keep telling myself that this is what she needs at the moment. I can't help but think about the long term when it comes to pain meds. Our wonderful infusion nurse told me that I need to just focus on the here and now; and right here, right now she is in need of this.
At the present time we are still home with her and we are trying our best to remain at home as we really really want to celebrate Thanksgiving together in our house around our table. I realize that if they tell us that she needs to be admitted I am fully prepared to do this, it is what she needs, what she deserves. We have an amazing care team that fully trust in our care of our girl and know whole heatedly that tomorrow is a holiday and that we very much want to be at home. I have faith that no matter what Lucy is going to get the care that she needs, we will do our best to make her as comfortable as possible. She is in pain most of the time, and complaining of belly pain all of the time. With pain meds she perks up a bit, but without them she is withdrawn and silent.
We have so much to be thankful for this Thanksgiving, including the love and support, thoughts and prayers of so many. We have been blessed to live this life, and are reminded of that on a daily basis.
I have such a difficult time seeing her in pain, and at the same time it is equally as difficult for me to keep pushing so many pain meds into our four year old's body. I have to keep telling myself that this is what she needs at the moment. I can't help but think about the long term when it comes to pain meds. Our wonderful infusion nurse told me that I need to just focus on the here and now; and right here, right now she is in need of this.
At the present time we are still home with her and we are trying our best to remain at home as we really really want to celebrate Thanksgiving together in our house around our table. I realize that if they tell us that she needs to be admitted I am fully prepared to do this, it is what she needs, what she deserves. We have an amazing care team that fully trust in our care of our girl and know whole heatedly that tomorrow is a holiday and that we very much want to be at home. I have faith that no matter what Lucy is going to get the care that she needs, we will do our best to make her as comfortable as possible. She is in pain most of the time, and complaining of belly pain all of the time. With pain meds she perks up a bit, but without them she is withdrawn and silent.
We have so much to be thankful for this Thanksgiving, including the love and support, thoughts and prayers of so many. We have been blessed to live this life, and are reminded of that on a daily basis.
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So sorry to hear she is struggling and in pain- we hope you are able to have Thanksgiving at home and she stabilizes quickly-
Diane
Prayers Miss Lucy pulls it together and the meds get control of her pain. My heart aches for you and your precious girl!!!! We will be thinking about you guys and praying for healing and hope. Happy Thanksgiving, Clara-Leigh
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