Happy St. Patty's Day from our Sweet Little Good Luck Charmer!
Kaitlyn went for 3 full days without any food/formula so last night we gave her 3oz over the entire night, which is very, very slow. We also got up every 3 hours to give her morphine throughout the night to make sure she was comfortable. It also helps with her breathing.
Today she sounds very congested in her throat and lungs. She is comfortable and asleep but her breathing sounds gunky. I've done breathing treatments, started an antibiotic and deep suctioned her today with the hopes of getting some of the fluid out. We are still doing Lasix today and she had a big wet diaper earlier! Yay! She hasn't had any more wet diapers than that one so it's still not looking good.
Overall, she is hanging in there. She's had breathing changes with the congestion and still not responding as we would like with the Lasix. She still has swelling and we are holding her feedings today. When I deep suctioned her earlier (tiny tube up the nose, down the throat, etc. not pleasant at all) she barely squirmed. The morphine is definitely helping her to stay relaxed and asleep, which is good. We have noticed though that when she is laying on her left side, her oxygen concentration drops really fast (to 80) but is much better on the right side (90s). This is probably due to the large size of her liver pushing on her lungs and blood vessels. We still have to change her position often though due to the swelling and circulation problems so it's a constant up/down with her pulse/ox numbers.
Today we had another birthday party, an early one for me! It was great to have most of our family here for lunch and ice cream cake. It's nice to have something to celebrate and take your mind off things for a little while.
Thank you to everyone for the messages and shares on Facebook and email. We have such a great support system out there- all of you guys!!!
Kaitlyn went for 3 full days without any food/formula so last night we gave her 3oz over the entire night, which is very, very slow. We also got up every 3 hours to give her morphine throughout the night to make sure she was comfortable. It also helps with her breathing.
Today she sounds very congested in her throat and lungs. She is comfortable and asleep but her breathing sounds gunky. I've done breathing treatments, started an antibiotic and deep suctioned her today with the hopes of getting some of the fluid out. We are still doing Lasix today and she had a big wet diaper earlier! Yay! She hasn't had any more wet diapers than that one so it's still not looking good.
Overall, she is hanging in there. She's had breathing changes with the congestion and still not responding as we would like with the Lasix. She still has swelling and we are holding her feedings today. When I deep suctioned her earlier (tiny tube up the nose, down the throat, etc. not pleasant at all) she barely squirmed. The morphine is definitely helping her to stay relaxed and asleep, which is good. We have noticed though that when she is laying on her left side, her oxygen concentration drops really fast (to 80) but is much better on the right side (90s). This is probably due to the large size of her liver pushing on her lungs and blood vessels. We still have to change her position often though due to the swelling and circulation problems so it's a constant up/down with her pulse/ox numbers.
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| Cole and Cousin Dane playing in the truck |
Today we had another birthday party, an early one for me! It was great to have most of our family here for lunch and ice cream cake. It's nice to have something to celebrate and take your mind off things for a little while.
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| Ice Cream Cake! |
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| Made a wish! |
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| My Lucky Boy |
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| Ahhhh... I'm being chased! |
Thank you to everyone for the messages and shares on Facebook and email. We have such a great support system out there- all of you guys!!!
She is such a fighter and I always love seeing her bows. They are as precious as she is. Your family continues to be in my thoughts and prayers many times throughout the day. Praying for strength and comfort for your family and for Kaitlyn.
ReplyDeleteKaitlyn looks so pretty in green! And her hair always looks so beautiful. Thank you for keeping everyone updated. I think and pray for Kaitlyn many times throughout the day and am always checking my computer to see if anything has been posted. Much love and many prayers being sent from Waxhaw NC tonight. Allison Kollmann
ReplyDeleteHappy Birthday Deanna! The way you stay positive through this is such an inspiration to me. All my love and prayers to beautiful little Kaitlyn!
ReplyDeleteAmy Smith
I think of you guys often even though I don't know you. Kaitlyn has an amazing place waiting on her when she is ready. My prayer is for her to be as comfortable and pain free as possible until she meets Jesus and receives her set of wings. C.Lawrence. Mint Hill
ReplyDeleteWhat a beautiful good luck charm. Kaitlyn is so very precious.
ReplyDeleteI have never met you or your family but I have been deeply moved by your story and by sweet Kaitlyn especially. She is such a beautiful little girl! Please know that there are many prayers going up for all of you and that your family's strenght and faith are an inspiration to me.
ReplyDeleteAmanda - Spartanburg, SC
She is so beautiful !!!!! No words to describe what a blessing she is to your family and what a blessing you all are to her !!!!! I've been following your story thru a friend of mine and think of your family everyday. Thank you so much for the updates! Debbie Camps, Matthews NC
ReplyDeleteLove, love, love the picture of you two and the cake! Shannon, Spartanburg
ReplyDeleteKaitlyn is such a beautiful girl! She has a peaceful glow about her which is lit by your unconditional love and prescence! Praying she continues to be pain free!
ReplyDeleteSuch a beautiful little girl in her good luck green...and that is one adorable little boy! We have never met but its evident how very lucky they both are to have you and Chip as parents. Happy St. Patty's Day!
ReplyDeleteHappy birthday, pretty Mommy!! To me, you're both "charmers." I hope everyone has a good night's rest, and I continue to pray that Kaitlyn is comfortable with you so patiently caring for her every need. God bless all of you.
ReplyDeleteHappy St. Patty' Day sweet Kaitlyn!! Love your shirt and hair bows! Praying for a good night for you and Mommy and Daddy!
ReplyDeleteWhat a beautiful little charmer she is! I just love all of her adorable hair bows and her perfect ringlets. Happy early birthday to mommy, and Cole is such a cutie pie in his St Patty's day outfit! I hope Kaitlyn has a peaceful night and that the lasix helps clear some fluid so she can breathe easier. Still thinking of and praying for your precious family, everyday.
ReplyDeleteAll my love,
Mary in AZ
Love Kaitlyn's bows! Praying for comfort.
ReplyDeleteTeary smile here in MN ~ Thank you for sharing the joy that comes in the midst of such deep suffering. The Jesus story of pain but great hope that is being told through your family is impacting, friends. God bless you in true and unexpected ways. "Fear not, for I have redeemed you. I have called you by name; you are MINE." ~Is.43:1
ReplyDeleteIn Him,
Amy Skogerboe
Praying everyday for your family. I am glad she is able to rest comfortably without pain. I hope the Lasix works and that your family has a good night. Your kids are so lucky to have such a caring and loving Mommy and Daddy ;-)
ReplyDeleteYou are blessed.. Not lucky. Kaitlyn has overcome so many challenges from the love of Jesus and the power of prayer. I check your blog daily. I cry. I pray. I rejoice and I thank Jesus that he blessed kaitlyn with such amazing parents because you are just what she needs. I have a special needs child and you make me love and appreciate him so much more. I hope to be an amazing parent as you are to sweet kaitlyn. She knows this. Her sweet smiles. You are such a blessing and an inspiration and your beautiful daughter will never be forgotten. She has shown me what true love is all about even when tines are the most difficult. Stay blessed. You deserve it
ReplyDeleteIt's Mother's Day in the UK so I would like to wish you a happy Mother's Day! I think you deserve to celebrate it. XXX
ReplyDeleteI also don't know you guys, but have been deeply moved by Kaitlyn's story & your family's brave & unwavering strength. I realized recently that Kaitlyn & my daughter Kaylee share the same birthday which made it hit home even more. I keep your family in my prayers every day & I know that when it is her time Kaitlyn will be welcomed into God's kingdoms with open & loving arms. I pray that there she will get to run, play & have the wonderful experiences that this disease has stolen from her in this life. The one thing that the disease cannot take from her is the love & devotion from you all & all of the people whose lives & hearts she has touched.
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