Good Morning and God Bless all!
Not too much to report on this morning. Poor Madeline has been having high blood pressures all night -up into the 150's- so they are increasing the dose of the new blood pressure med she is on (norvasc) and still having her take the nicardipine. The goal is to get her off the nicardipine but looks like that won't be happening today.
Her Creatinine is 4.01 *(.01 difference from yesterday) and her BUN is 31- The Dr's keep saying we just have to wait and see but we are worried that she is not making more progress in the kidney functioning arena. We asked them what happens if two weeks from now comes and she is still the same kidney wise, and they said at some point we would have to discuss if full recovery is an option for her/long term dialysis/kidney transplant. I hope this is not the case. While she is urinating and that is very good, the issue is that her levels of electrolytes are all off. Now her kidney is dumping out too much of the things she needs (like sodium and bicarbonate) instead of retaining them. So that needs to improve. Please pray that she would start regaining more functioning soon.
They decreased her feeds last night to 40 cc's but would like to go back up to 60 today if possible. They will start with 50 cc's for the next few days and if that goes well, they will take her back up to 60.
Day 2 of the dairy free diet is going a little better. I did find some almond milk at whole foods and some chocolate chip cookies even! Too bad they cost 3.49 a box (oh my!).
Things are crawling along, it is disheartening feeling like we are never going to get her out of here but we know we have to trust in God. He will always help us through.
Thanks everyone
Not too much to report on this morning. Poor Madeline has been having high blood pressures all night -up into the 150's- so they are increasing the dose of the new blood pressure med she is on (norvasc) and still having her take the nicardipine. The goal is to get her off the nicardipine but looks like that won't be happening today.
Her Creatinine is 4.01 *(.01 difference from yesterday) and her BUN is 31- The Dr's keep saying we just have to wait and see but we are worried that she is not making more progress in the kidney functioning arena. We asked them what happens if two weeks from now comes and she is still the same kidney wise, and they said at some point we would have to discuss if full recovery is an option for her/long term dialysis/kidney transplant. I hope this is not the case. While she is urinating and that is very good, the issue is that her levels of electrolytes are all off. Now her kidney is dumping out too much of the things she needs (like sodium and bicarbonate) instead of retaining them. So that needs to improve. Please pray that she would start regaining more functioning soon.
They decreased her feeds last night to 40 cc's but would like to go back up to 60 today if possible. They will start with 50 cc's for the next few days and if that goes well, they will take her back up to 60.
Day 2 of the dairy free diet is going a little better. I did find some almond milk at whole foods and some chocolate chip cookies even! Too bad they cost 3.49 a box (oh my!).
Things are crawling along, it is disheartening feeling like we are never going to get her out of here but we know we have to trust in God. He will always help us through.
Thanks everyone
Oh Madeline! We love you Sweetie!
ReplyDeleteHang in there Folks! You have come a long way and you have a lovely little girl who loves you already very much!
Keep the Faith! God is with you always!
She is sure a beauty! Her skin color looks great! Love those rosy cheeks! Praying for all of you.
ReplyDeleteHi, my name is Rose, and I saw your blog on my friends facebook page. I have been praying for Maddie since I found the blog and will continue to do so. I have cried and rejoiced with every up and down she has gown through. But I can see God's hand on her life, it is beautiful. I have a 2 year old and a 5 month old. My 2 year old is allergic to Milk, Soy, Egg, and Peanut. I refused to put her on formula (1)b/c it is so expensive, and 2) b/c I really wanted to know that I was giving my child the best food possible.) I nursed her for a year, and intend to do the same for my son. I also work full time, so I am very accustomed to pumping. I have been dairy free, soy free, egg free and peanut free for almost 2 years. It has been challenging at times, but I find that sacrificing for my children is totally worth it. I reached out to my lactation consultants at Hillcrest and Lakewood for help. They had a lot of resources. E-mail me if you ever want to chat about "elimination diets" or anything else. P.S. Oreo's are dairy free! I live on them! So does my daughter! (rosedh1504@hotmail.com)
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