Kaitlyn's lungs have fluid in them and the disease is taking them over. It isn't pneumonia, but more likely disease progression and the build up of fluid and macrophages (from NPA) causing her to have a hard time breathing and maintaining her oxygen saturation. We don't know what that means time wise for Kaitlyn (hours, days, weeks?). All we know is that there has been a significant change and it's not a good one.
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| This morning |
We were advised to hold her feedings completely today, except for water that we use after we give her her medications. This will help reduce the fluid in her body and possibly help her lungs. Most likely, she is transitioning into the final stage of life and she won't need as much nutrition, if any.
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| Fairies live in Kaitlyn's "Korner" |
She also suggested turning off Kaitlyn's pulse/ox monitor since her oxygen is dropping and it just keep alarming. I completely understand why she would suggest that, but for me I have to know what's going on. We are keeping the pulse/ox on for now. I did change the settings on the alarm so it will only go off if her oxygen is really low.
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| Daddy caught us napping together |
Chip, Kaitlyn, Cole and I are spending the day together just being a family and being here for Kaitlyn.
Please continue to pray for peace and comfort for Kaitlyn during this time. Thank you from the bottom of our hearts.
All of you are loved by so many and you are in our thoughts each day.
ReplyDeleteLord, please be with this precious family, especially sweet Kaitlyn. Hold her in your arms and comfort her like only you can. Lord, please give her peace and take any pain away from her so that she can rest comfortably. Lord, please give strength and encouragment to her parents during this time. Cover the family with your love, Lord. In Jesus' name I pray, Amen.
Deanna,
ReplyDeleteWe have never met but I think of your family so often and pray for you every time I pass your house (I am your neighbor on Farm Pond). Please know that we are praying daily for Kaitlyn and are here for you. Sarah Russell
I am praying for Kaitlyn, she is on my mind and in my heart constantly. Kaitlyn is lucky to have such caring parents that love her so much...really you two are amazing parents and you are doing such a great job taking care of your baby girl. Kaitlyn is in my prayers as well as the rest of the famILY. Kaitlyn knows how much you all love her, know that in your hearts. I hope she improves and I pray for comfort for your beautiful little princess.
ReplyDeleteThis is hard to read....I am so sorry for all your little girl is going through, and your entire family. You are very much in my thoughts and prayers.
ReplyDeleteI have been following your blog for a few months and you are in my thoughts daily. My heart goes out to all of you during this time. Thinking of you and praying for Kaitlyn and your entire family.
ReplyDeleteAli Reardon
Sending lots of prayers for Kaitlyn and her family. God knew just what he was doing when he placed her with you - her to bless you and you to bless her. Peace and love,
ReplyDeleteLaurie & Dave High and kids...
Although we've never met, I have followed your blog through my dear friends. We're praying for your sweet family now. Praying for strength and peace as God holds you through this journey. God has trusted you so much with sweet Kaitlyn and your faithfulness has been amazing and inspiring. What a blessed little girl Kaitlyn is to have you for a mommy and daddy - your love and heart is so evident in your written words and pictures. Thank you for sharing your journey - Kaitlyn has blessed us so much and we will keep praying.
ReplyDeleteLove and blessings,
Heidi and Caleb Miller
Deanna,
ReplyDeleteI am a friend of Anne Ward's and have been keeping up with your sweet family through her, your blog and facebook. Please know that you are all in my prayers, and those of so many others. I pray that your time together is filled with peace and clarity for all of you in whatever capacity each of you is able, including Kaitlyn. I truly believe that God holds a special place in His heart for every child, most especially those who are sick, helping them through all of this. You are an amazing family and I cannot imagine the strength it takes every moment of the day. I also pray for your strength in loving both of your children.
Nicole
Praying for all of you without ceasing. My heart is heavy. My eyes full of tears. Through this, thank you for sharing her with all of us.
ReplyDeleteDear Deanna,Chip,Cole, & Kaitlyn, I have only met your family once through my son & daughter-n-law. I always ask how Kaitlyn is doing. Kaitlyn and your family are always in my prayers and I will keep praying for you all each and everyday. All of the post say you are a blessing to Kaitlyn and she is so lucky to have you as wonderful parents taking care of her. I hope the Lord takes her pain away and I know he is watching over her.
ReplyDeleteKimberly Smart
Your family and precious Kaitlyn are in our prayers. We are lifting you up, giving you strength and surrounding you with all the love and prayers we can muster. Your familys strength, courage and faith in our Lord is so inspiring! I know the Lord and all of his mightiest angels are watching over your precious little one and I pray he will ease her pain and soothe her soul as well as your familys. God Bless and keep you all!
ReplyDeleteMy prayers for Kaitlyn and your family. I have asked our church to include special prayers this weekend for your family. Kaitlyn has touched so many of us and we are all sending her and your whole family our strength and love.
ReplyDelete