Kaitlyn is one tough cookie! Her heart was racing all night and her oxygen was low (in the 70s). To put things into perspective, if you took your child to the doctor and their oxygen concentration was normal, it would be around 97-100%, if you took your child to the doctor and it was below 92%, they would probably send you to the hospital if it didn't come up on its own or with a breathing treatment. Kaitlyn's is in the 60s/70s. Her body is fighting to stay alive. With a heart rate that high, you can imagine that it is tough to fall asleep.
She is a little bit more swollen today that she had been the last time Stephanie, RN with hospice had seen her. This could be because we stopped the Lasix for a day so we started it back up. It could be her body just can't handle ANY liquids, even the water that is used to flush her medicines through her G-tube.
We were also advised to discontinue the following medications: Lactulose, Neurontin and Keppra. That would leave her with Lasix, Klonopin, Valium, and Morphine. As well as her pain patches on her back and the scopalomine patch.
She just got a bath and that typically calms her down and makes her more relaxed. Right now her O2 is 74 and her heart rate is at 150. Hopefully she can get some rest and be at peace when the time comes.
We know that our body- the tent we live in here on earth- will be destroyed. But when that happens, God will have a house for us. It will not be a house made by human hands; instead, it will be a home in heaven that will last forever.
2 Corinthians 5:1
She is a little bit more swollen today that she had been the last time Stephanie, RN with hospice had seen her. This could be because we stopped the Lasix for a day so we started it back up. It could be her body just can't handle ANY liquids, even the water that is used to flush her medicines through her G-tube.
We were also advised to discontinue the following medications: Lactulose, Neurontin and Keppra. That would leave her with Lasix, Klonopin, Valium, and Morphine. As well as her pain patches on her back and the scopalomine patch.
She just got a bath and that typically calms her down and makes her more relaxed. Right now her O2 is 74 and her heart rate is at 150. Hopefully she can get some rest and be at peace when the time comes.
We know that our body- the tent we live in here on earth- will be destroyed. But when that happens, God will have a house for us. It will not be a house made by human hands; instead, it will be a home in heaven that will last forever.
2 Corinthians 5:1
Kaitlyn is a true Warrior Princess!!! Praying constantly for peace for all of you. You are such an inspiration and a bolster to my own faith. Sending so much love and many prayers!
ReplyDeleteAimee
Kaitlyn is such a little fighter. I know your family must have had a long night not knowing what to expect. Kaitlyn and your family is in my thoughts and prayers throughout the day...many times a day. The strength and love of your family has encouraged so many throughout this country who have been following you. For myself, you have taught me to slow down and take nothing for granted. Always count my blessings and understand how precious life is. I am praying for your family and for Kaitlyn. I pray that God will wrap you in His love and strength. He knows when the time is right for Kaitlyn and as he promises us in Revelations, He will make all things new. Love, strength, and prayers to your family. Love, Genia
ReplyDeletePraying for precious Kaitlyn, you, Chip, and Cole. You and your family are incredible people of great faith.
ReplyDeleteMay our God wrap his loving arms around you and give you strength, comfort, mercy, and peace.
She is definitely a little girl who never gives up:) Sending love and prayers to Kaitlyn and your family! Hope she can relax and rest peacfully today. God bless you all!
ReplyDeletePraying for peace and calm for Kaitlyn. I'm sure that bath was very important. Sending love....
ReplyDeleteNanci & Mike
Kaitlyn, you are amazing. You have a wonderful, loving family and the promise of eternal life from God. What a beautiful life you have and will continue to have with our Lord. I pray for your comfort and that you and your family feel the power of God's love today and everyday. Shannon in Spartanburg
ReplyDeleteKaitlyn could teach us all about strength and perserverance! Her resilience is evidence of what a wonderful and loving family she has in you guys. Praying for your entire family.
ReplyDeleteToday is Kaitlyn's great great grandmother's birthday, Evelyn "Nan" Andersen. I can't help but remember what Colten said in "Heaven is for Real." When he got there, he met his grandfather and a sister that he had never met before. With this in mind, I think Nan will be waiting for Kaitlyn when she arrives in heaven. Nan will teach her how to paint cool abstract paintings, how to swim, and how to play solitaire. Colten said no one is old in heaven so I think Nan is back to her young self. Thinking of this gives me peace, maybe it will give you some peace too. We continue to pray for all of you many times a day. Sending all the love that we possibly can....
ReplyDeleteJulie Sawyers
Kaitlyn, you are always in my thoughts. Your fight is so inspiring to me. I have never seen a child so loved as you! Peace and comfort. Love always!
ReplyDeleteAmy Smith, Red Lion PA.
As always Kaitlyn, is in our hearts and prayers. May she find peace and be comforted by all of your love. May you, Chip and Cole feel the love being poured out from afar. Kaitlyn is such a little miracle.
ReplyDeleteLove and prayers!
What a beautiful script and perfect too. She is a tough cookie! Bless her heart. I don't personally know Kaitlyn but I feel I know her through your wonderful blog. I can NOT stop thinking about her and talking about how wonderful she is. She is a true blessing and an Angel. I will always think about her. I wish I could do more. I wish I could hug and kiss her and play tea party with her. We give her lots of love, hugs, kiss and and prayers from No. Va.
ReplyDeletePenny
aka kittikatkitty
Sending thoughts for peace and comfort for Kaitlyn and your family.
ReplyDeleteAMAZING truly an amazing lil girl. I love her more and more everyday. She is truly an inspiration to all. My prayers are with you, she gets an extra one every night before I rest.
ReplyDeleteAll of you are amazing, especially Kaitlyn the Fighter! You are all in my thoughts constantly throughout the day and our family prays for yours several times a day. Whenever I am reading your blog and my daughter sees a picture of Kaitlyn, she says, "we need to pray for her." Kaitlyn has touched the lives of so many - even little children (who are learning what it means to pray for others). I pray for peace and comfort for Kaitlyn, but also for you and your husband. We send you lots of love and hugs.
ReplyDeleteBless her little heart...shes just soo strong!!! We love you cupcake :) thinking of you & sending prayers & love often
ReplyDeleteYou are on my mind constantly. Thank you so much for sharing Kaitlyn with us. I haven't met your family, and I probably never will, but feel such a bond b/c Kaitlyn looks so much like my daughter at 2 years old. Please know that you are loved my many and many prayers are being said for your family.
ReplyDeleteThe strongest and most amazing fighter I've ever known was my dad. He went home to Jesus last May and when he was at this stage of life, he was unconscious. Kaitlyn may just best his strength, determination and courage. She is just not quite ready to leave you yet. What a true angel.
ReplyDeletePraying for peace and comfort for all of you and praying that every child can know the love that Kaitlyn knows.
ReplyDeleteShe just keeps holding on! Sending strength, peace and comfort your way.
ReplyDeleteHoping the little one can get some rest. XOXO
Denise
She just isnt done touching lives ~ even though its hard to grasp why she is suffering, she truly has a job here on Earth! The hearts that are being softened and the love that is spreading, only proves what a miracle she has become for so many! If she can fight, so many others who suffer from their own afflictions certainly can! God Bless ~ Michelle Schaffer ~
ReplyDeleteWhat a FIGHTER! Kaitlyn you are an amazing little girl. You have shown me who I want to be. You make me want to do better. Your mom and dad are amazing parents. They love you more than anything. They have taught me how to be the parent I am striving to be. All around a better person. God Bless you sweet girl. When you make it to Heaven - can you find my momma and hug her tight for me. She will know who you are - she is expecting you. I pray to her about you every night. God Bless my sweet angel.
ReplyDeleteAmy Barrett - Gainesville, VA
Your honesty and open hearts through this process have been such a blessing, more than you know. Thank you for that. Praying for peace that surpasses all understanding.
ReplyDeleteDeanna, How I wish I could give you and your family a hug. Since I can't I'll embrace you through prayer. God is never late. He will take Kaitlyn home when her work is completed. She has touched my life in so many ways. You truly have reflected God's grace as you minister to Kaitlyn's needs. Only heaven will reveal the extent of your experience and how it has helped others. My Bible Study leader often tells us that our suffering is not a punishment, but an opportunity to model God's grace. I love you my sister in the Lord. Judy from Ohio
ReplyDeleteWow, she is something else. I am amazed by this child and I don't know you or your family but I check your blog every day and sometimes a couple times a day. She gives such perspective and has such strength. She is truly an inspiration to everyone who reads about her. My little girl and I pray for her every night and my daughter gives her kisses. Praying for you all daily.
ReplyDeleteShauna in Maryland
We love you, Girlie! You are quite the fighter. You just keep soldiering on, and we (your Army) will keep following!!! God's love and peace to you and your family. Sending prayers and love, Miss Kaitlyn.
ReplyDeletepraying for this sweet angel and her family. words are not enough to explain how she has touched the lives of so many. many she be comforted in kowing just how many people love and care for her. she is so special.
ReplyDeletecassie - newton, nc
Still praying....may God hold you in the palm of His mighty hand.
ReplyDeleteGod is watching over her. And we are all praying for Kaitlyn.
ReplyDeletePraying SO much for comfort and peace for sweet Kaitlyn, and strength for your family!!! I know God is with her, nurturing her every step of the way until she fulfills her purpose here on earth.
ReplyDeleteI'm still praying for strength on your part and peacefulness for Kaitlyn. God bless her little soul. With hers meds, I would guess that she is pain-free. My heart aches for all.
ReplyDeleteI want you to know how much Kaitlyn's story has changed my life. I think of her every minute of the day and pray constantly for her comfort and your family. The courage it must take to go through this is unbelievable. God is wonderful and your trust and faith in God is immeasurable. Much love to you and your family.
ReplyDeleteKaren-Jacksonville, Fl
Praying for peace and rest for Kaitlyn and her Mom and Dad!!!! Jesus is with you all and will be throughout this difficult, heartbreaking journey <3
ReplyDeleteLove In Him,
Cathy Hammonds
Praying for your precious angel Kaitlin! She is so beautiful!! She has touched my family's life so much. I am thinking of your family and praying for u sweetie!!
ReplyDeleteThe Angels must be working hard to prepare heaven for such a perfect angel to join them. But when the time is right she will spread her wings and fly. I cant imagine the party that will go on up there upon her arrival! I imagine her smiling and singing and being so so happy and free! May comfort find you and your family...
ReplyDeleteYour story is amazing!! Your little girl is a fighter beyond belief!! How proud you all must be!! Prayers sent above for you all
ReplyDeleteWhat a little warrior she is....truly one of God's angels. Your family and Kaitlyn has been on mind all day and I wish her comfort and love. My prayers are with you and I ask for peace at this difficult time.
ReplyDeleteI've thought of you guys all day and keep checking your blog. Thank you for continuing to update us. Kaitlyn is such an amazing little girl! You are in my prayers throughout the day, every day. Sending love your way. The Russells
ReplyDeleteThank you for sharing the updates and Kaitlyn with the world. She has made a HUGE difference in many peoples lives.
ReplyDeleteStacey
Kaitlyn really is such a little fighter!!! She is absolutely amazing!
ReplyDeleteAli Reardon
Thoughts and prayers sent your way. Little Kaitlyn is amazing and thank u for sharing your story..
ReplyDeleteSome people work a lifetime to touch others hearts. In her short time here, Kaitlyn has not only touched hearts, but souls. She will live lifetimes in memories and her strength remains forever.
ReplyDeleteYour testimony of faith lived out each day with your precious Kaitlyn has touched so many! Even though I do not know your family personally we all are part of the family of God. Thank you for sharing your beautiful family with me! Many God continue to comfort and give you all peace!
ReplyDeleteHeather
Deanna and Chip,
ReplyDeleteWhen you embrace your sweet Kaitlyn tonight, will you whisper to her that a nana from Pitsburgh, Pennsylvania has a sweet, gentle cocker spaniel waiting for her in heaven. She will lick her face, fetch a ball, and bring much fun and happiness to Kaitlyn. I am praying tonight for God to give to you and your family what he feels is best for all. Sleep tight and sweet dreams, baby girl.
As I sit here with tears running down my face I can't help but look over at my children sleeping on the couch and think how could I ever get mad at them when someone out there is hurting so bad. I pray for your family and for little Cole. I pray for his understanding when his sister is no longer there for him to kiss and love on. I pray for comfort in knowing Kaitlyn is in heaven and watching you and living every moment with you of every day. I know nothing anyone says makes any of it any easier but know we are hear, most you will never meet, praying for you all in this difficult time. I pray for for God to wrap his arms around Kaitlyn and Deanna, Chip and Cole and hold you with him as Kaitlyn makes her way home to our lord where she will forever live without pain. And most of all when that time comes I pray that peace will come back into your lives.
ReplyDeleteLike some others on this page, I do not know you or your absolutely beautiful daughter personally. I ran across your blog on a friend's Facebook page one day recently as she was requesting prayer for you. I have read every entry you have posted. Your family is such an inspiration and a wonderful testament of faith. I think of Kaitlyn often and check here for updates daily. Please know you are in the thoughts and prayers of many. You will continue to be on my heart and mind. God bless you for the wonderful parents and example you are to all of us.
ReplyDeleteContinued prayers
ReplyDeleteSending you thoughts, prayers, and love from Richmond, VA. I saw your story on the news a few months ago for the vigil and have been following Kaitlyn's journey ever since. She is a sweet girl who has touched the lives of many. Praying for comfort and peace during this difficult time.
ReplyDeleteShelley
Words don't seem sufficient. Praying for sweet Kaitlyn to be delivered from any pain and suffering and to be comforted in the arms of the angels when she is finally called home. I cannot fathom what the two of you as parents are going through watching this terrible disease take it's toll of beautiful Kaitlyn. God bless you all.
ReplyDeleteI pray for the peace that passes all understanding for your family at this time. Keep loving her til Heaven needs to love her more.
ReplyDeleteAnother friend of a friend of a friend here who has been thinking about your family and Kaitlyn. I have prayed that God surrounds you with his comfort and peace, and that Kaitlyn has a beautiful place in heaven and will receive the biggest hug ever from her Savior and Creator.
ReplyDeleteLove and prayers, Kerri in Kannapolis
Praying and I know that God is with you and your family. She is a Fighter indeed.
ReplyDelete"Be not afraid. I go before you always. Come follow me and I will give you rest."
ReplyDeleteI am praying for your family and for sweet Kaitlyn. I love her and I have never even met her. Kaitlyn is truly an Angel on this Earth and she has touched my life in a way way I will never forget. I am changed forever. Thank you. I pray for peace for you, Chip and especially for Kaitlyn.
I continue to pray for all of you, especially precious little Kaitlyn!!
ReplyDeleteEverynight when I am at work I pull over to check on how Kaitlyn is through your postings. Her story has made me hug & kiss my own two girls more. Her story has made me realize life is a gift. Keep fighting beautiful Kaitlyn. I hope when the time comes she is comfortable and at peace. Your strength and faith is amazing.
ReplyDeleteI heard this on the radio this morning and had to share.....your vast amount of time with your precious Kaitlyn is TO COME....not now...but TO COME!
ReplyDeleteI am a friend of a friend who has seen the blog post on my facebook wall. I am deeply touched by your family (having two small children of my own). You all will be in my prayers especially Kaitlyn as her little body continues to fight this disease. She has truly touched my heart. Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.” Mathew 19:14
ReplyDeleteI have friends that keep us updated by forwarding your blog. We are praying for Kaitlyn and you all.
ReplyDelete