Cathy in IL Posted May 1, 2008 Share Posted May 1, 2008 We have been in the hospital since early Sunday morning. My son is 4 and he has sickle cell disease. Sunday he woke with a temp of 104.5 and was having difficulty breathing. I rushed to the ER and we have been at the children's hospital since. He has acute chest syndrome which is a serious compication of sickle cell. He has had two blood transfusions in the past two days and is on a few IV antibiotics and regular breathing treatments. He spiked another high fever late last night so they did more labs at 2 this morning to see if he has a blood infection. Basically he keeps seeming to get a little better and then takes a turn for the worse. The hemetologist thinks it may be time to start him on monthly blood transfusions and/or hydroxyurea {an oral chemotherapy}. She is concerned because he has a high potential for stroke and has had several episodes with the sickle cell that have been life threatening. the treatments could help him, but they come with their own set of risks and side effects. It's a big decision to make. I am essentially choosing which risk factors we would most like to live with. I have no idea when we will get out of here. Thankfully it is an excellent hospital and my girls are being well cared for with friends from church. But a hospital can never feel like home. Quote Link to comment Share on other sites More sharing options...
Kelli in TN Posted May 1, 2008 Share Posted May 1, 2008 Oh Cathy, I would just be a puddle on the floor by now. The mental picture I get of a such a little one so very sick breaks my heart. You are in my prayers today. Please update us as you are able. Quote Link to comment Share on other sites More sharing options...
Only me Posted May 1, 2008 Share Posted May 1, 2008 Are you at Children's Memorial in Hospital? That is a good hospital. Your ds, you and my family will be in my thoughts and prayers. Please keep us posted. Quote Link to comment Share on other sites More sharing options...
Doran Posted May 1, 2008 Share Posted May 1, 2008 Everytime you post about your son and the struggles with his illness, I am struck by how bravely you move through life, and so too, your little son. I understand that "it's just what you do", but it impresses me deeply and reminds me to think before I whine, and to reach out in my heart to people like you who are dealing with so much. While I know that your choices are laden with difficulty and risk, I hope you will find peace with one. Strength to you and your whole family. {{{{Cathy}}}} Quote Link to comment Share on other sites More sharing options...
elegantlion Posted May 1, 2008 Share Posted May 1, 2008 Prayers here. :grouphug: Quote Link to comment Share on other sites More sharing options...
Sue G in PA Posted May 1, 2008 Share Posted May 1, 2008 Cathy, I'm praying for you and your son...your whole family... right now. I'm not sure I would have the strength that you do in a situation like this. God is our Healer. Quote Link to comment Share on other sites More sharing options...
Trivium Academy Posted May 1, 2008 Share Posted May 1, 2008 Prayers Cathy for everyone. Quote Link to comment Share on other sites More sharing options...
Mrs. Readsalot Posted May 1, 2008 Share Posted May 1, 2008 Our thoughts and prayers are with your ds, you and your family. Quote Link to comment Share on other sites More sharing options...
GailV Posted May 1, 2008 Share Posted May 1, 2008 I am so sorry. I can't imagine what you're going through. :grouphug: Quote Link to comment Share on other sites More sharing options...
sleepy Posted May 1, 2008 Share Posted May 1, 2008 That's just so much for such a little person to handle. :crying: Quote Link to comment Share on other sites More sharing options...
Jenny in Atl Posted May 1, 2008 Share Posted May 1, 2008 :grouphug: You have a very brave young man and you are his rock. The girls and I will be thinking of you both, as we move through our day. Quote Link to comment Share on other sites More sharing options...
Kari C in SC Posted May 1, 2008 Share Posted May 1, 2008 I am praying for you and your little guy. Quote Link to comment Share on other sites More sharing options...
Kathy in MD Posted May 1, 2008 Share Posted May 1, 2008 praying Quote Link to comment Share on other sites More sharing options...
prairiegirl Posted May 1, 2008 Share Posted May 1, 2008 Oh, Cathy, I am so sorry. I am praying for you and your ds. Quote Link to comment Share on other sites More sharing options...
percytruffle Posted May 1, 2008 Share Posted May 1, 2008 Oh (((Cathy))). I am praying for your son and for you. Quote Link to comment Share on other sites More sharing options...
crazycoffeechic Posted May 1, 2008 Share Posted May 1, 2008 Praying here. Quote Link to comment Share on other sites More sharing options...
Dayle in Guatemala Posted May 1, 2008 Share Posted May 1, 2008 Cathy :grouphug: you and your family are in my thoughts and prayers, especially your ds. Quote Link to comment Share on other sites More sharing options...
KidsHappen Posted May 1, 2008 Share Posted May 1, 2008 Praying for you and your family. :Angel_anim: Here' an angel to watch over you. Quote Link to comment Share on other sites More sharing options...
hsmamainva Posted May 1, 2008 Share Posted May 1, 2008 I will be praying for your little boy!!! Quote Link to comment Share on other sites More sharing options...
WTMindy Posted May 1, 2008 Share Posted May 1, 2008 I am praying now for your whole family!!! You are an amazing mom and I am so inspired by your steadfastness!! Quote Link to comment Share on other sites More sharing options...
Andie Posted May 1, 2008 Share Posted May 1, 2008 Praying for all of you. :grouphug: Quote Link to comment Share on other sites More sharing options...
DollyM Posted May 1, 2008 Share Posted May 1, 2008 I'm sorry you are under this trial. I will look for your updates to pray more. Quote Link to comment Share on other sites More sharing options...
DB in NJ Posted May 1, 2008 Share Posted May 1, 2008 (((Cathy))) I'm praying for you all right now. Quote Link to comment Share on other sites More sharing options...
Tammyla Posted May 1, 2008 Share Posted May 1, 2008 Oh, the poor baby. Prayers for you and the little guy. Quote Link to comment Share on other sites More sharing options...
Lisa in SC Posted May 1, 2008 Share Posted May 1, 2008 I'll be thinking of you and your precious ds. Lisa Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted May 1, 2008 Share Posted May 1, 2008 I pray he heals and can go home soon. I pray God shows you exactly what to do for his care next. :grouphug: Quote Link to comment Share on other sites More sharing options...
Denise in IN Posted May 1, 2008 Share Posted May 1, 2008 I'm praying for your son's healing, and wisdom for you to make the difficult descisions. May you have peace and strength. :grouphug: Quote Link to comment Share on other sites More sharing options...
Colleen Posted May 1, 2008 Share Posted May 1, 2008 I feel so helpless; I wish there was something tangible I could do to help you. Peace to you, my dear. Quote Link to comment Share on other sites More sharing options...
OnTheBrink Posted May 1, 2008 Share Posted May 1, 2008 Cathy, I'm so sorry. :grouphug: Quote Link to comment Share on other sites More sharing options...
Mosaicmind Posted May 1, 2008 Share Posted May 1, 2008 Your little boys sounds like a trooper and you must have the strength of a saint. I will be sure to let my little boys know and we will be praying tonite before we go to bed. Hopefully you will have him home soon. Quote Link to comment Share on other sites More sharing options...
Jean too Posted May 1, 2008 Share Posted May 1, 2008 I am praying for your little boy. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted May 1, 2008 Share Posted May 1, 2008 Praying here. What difficult decisions. :grouphug: Quote Link to comment Share on other sites More sharing options...
Unicorn. Posted May 1, 2008 Share Posted May 1, 2008 Aww, Cathy. Hugs and prayers for all of you! Quote Link to comment Share on other sites More sharing options...
Laura in VA Posted May 1, 2008 Share Posted May 1, 2008 Praying that God will give you and your family peace and strength! :grouphug: Quote Link to comment Share on other sites More sharing options...
Sandra314 Posted May 1, 2008 Share Posted May 1, 2008 We have gone through similar experiences with our oldest son Michael. I believe through Prayer and Faith that God will carry you and give you comfort, courage and hope. Praying for your son... Quote Link to comment Share on other sites More sharing options...
Brigitte Posted May 1, 2008 Share Posted May 1, 2008 I will keep you all in my thoughts. Quote Link to comment Share on other sites More sharing options...
Anne/Ankara Posted May 1, 2008 Share Posted May 1, 2008 Our prayers are with you and your family. Quote Link to comment Share on other sites More sharing options...
Elisabeth in IL Posted May 1, 2008 Share Posted May 1, 2008 Praying, prayed! Quote Link to comment Share on other sites More sharing options...
ELaurie Posted May 1, 2008 Share Posted May 1, 2008 I will be praying. Quote Link to comment Share on other sites More sharing options...
Michelle in MO Posted May 1, 2008 Share Posted May 1, 2008 dear son. What a scary situation! I would be in a puddle on the floor, just like Kelli in TN. God bless you, and focus on His strength. Many hugs and prayers . . . :grouphug: Quote Link to comment Share on other sites More sharing options...
Pam "SFSOM" in TN Posted May 1, 2008 Share Posted May 1, 2008 Cathy, you're in our thoughts and prayers. Keep us updated as you are able. Quote Link to comment Share on other sites More sharing options...
Mrs Mungo Posted May 1, 2008 Share Posted May 1, 2008 I"m so sorry you're going through this. Many thoughts and prayers for you and your family. Quote Link to comment Share on other sites More sharing options...
Elm in NJ Posted May 1, 2008 Share Posted May 1, 2008 I am so sorry you and your family are going through this. You are in thoughts and prayers. Elmeryl Quote Link to comment Share on other sites More sharing options...
Quiver0f10 Posted May 1, 2008 Share Posted May 1, 2008 :grouphug: You are in my prayers. Quote Link to comment Share on other sites More sharing options...
CalicoKat Posted May 2, 2008 Share Posted May 2, 2008 We have been in the hospital since early Sunday morning. My son is 4 and he has sickle cell disease. Sunday he woke with a temp of 104.5 and was having difficulty breathing. I rushed to the ER and we have been at the children's hospital since. He has acute chest syndrome which is a serious compication of sickle cell. He has had two blood transfusions in the past two days and is on a few IV antibiotics and regular breathing treatments. He spiked another high fever late last night so they did more labs at 2 this morning to see if he has a blood infection. Basically he keeps seeming to get a little better and then takes a turn for the worse. The hemetologist thinks it may be time to start him on monthly blood transfusions and/or hydroxyurea {an oral chemotherapy}. She is concerned because he has a high potential for stroke and has had several episodes with the sickle cell that have been life threatening. the treatments could help him, but they come with their own set of risks and side effects. It's a big decision to make. I am essentially choosing which risk factors we would most like to live with. I have no idea when we will get out of here. Thankfully it is an excellent hospital and my girls are being well cared for with friends from church. But a hospital can never feel like home. praying for your son, Cathy, and for you for strength & wisdom. :grouphug: Quote Link to comment Share on other sites More sharing options...
Julpost Posted May 2, 2008 Share Posted May 2, 2008 praying here.... Quote Link to comment Share on other sites More sharing options...
Cathy in IL Posted May 2, 2008 Author Share Posted May 2, 2008 Thanks for the prayers and the encouragement. It has been a very long week, but we are going home today! I must admit I am a little nervous to be leaving here. He is not 100% well yet, but the doctors think he is well enough to be home. He will continue on oral antibiotics and the breathing treatments. We have an appointment with his hematologist on Tuesday. I researched a lot. I even read medical textbooks at the University of Chicago bookstore. ultimately I think I read more than I should have maybe, I don't know. I read hard cold medical research, not the books that are softened for the parents. I am not fully letting myself feel anything about what I have read. I am just overwhelmed. I think we will start with hydroxyurea, the chemo, in a week or two. Hopefully it will cause enough positive change for us to hold off on monthly transfusions for at least a little while longer. I am tired and not quite as relieved as I usually am when he goes home, but I am looking forward to seeing my girls. Quote Link to comment Share on other sites More sharing options...
Sahamamama Posted May 2, 2008 Share Posted May 2, 2008 ... praying for your little boy, your girls, and you. Quote Link to comment Share on other sites More sharing options...
Jackie in AR Posted May 2, 2008 Share Posted May 2, 2008 Thanks for the prayers and the encouragement. It has been a very long week, but we are going home today! I must admit I am a little nervous to be leaving here. He is not 100% well yet, but the doctors think he is well enough to be home. He will continue on oral antibiotics and the breathing treatments. We have an appointment with his hematologist on Tuesday. I researched a lot. I even read medical textbooks at the University of Chicago bookstore. ultimately I think I read more than I should have maybe, I don't know. I read hard cold medical research, not the books that are softened for the parents. I am not fully letting myself feel anything about what I have read. I am just overwhelmed. I think we will start with hydroxyurea, the chemo, in a week or two. Hopefully it will cause enough positive change for us to hold off on monthly transfusions for at least a little while longer. I am tired and not quite as relieved as I usually am when he goes home, but I am looking forward to seeing my girls. ((Cathy)) How exhausted (physically, mentally, emotionally) you must be! I'll keep you and your precious son in my prayers. I know your girls will be glad to see both of you, too. Quote Link to comment Share on other sites More sharing options...
Mamagistra Posted May 2, 2008 Share Posted May 2, 2008 Lifting you and your ds up in prayer, (((Cathy))). Quote Link to comment Share on other sites More sharing options...
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