Kaitlyn was put on Lasix yesterday to help get rid of excess fluid in her body. She still has swelling in her feet, legs and belly. We are also hearing a lot of sounds from her lungs so it is probably safe to say that she has extra fluid building up in her lungs too.
The Lasix did not work yesterday like it should have. She only had one wet diaper. We held her feedings for the past 24 hrs and are continuing to hold them until some of the swelling goes down. Feeding her will only make the problem worse.
So today we are doing Lasix twice a day, albuterol breathing treatments to help open her airway and dry her lungs out a little (as long as it doesn't raise her heart rate too much), 1/2 of a scopolamine patch behind her ear to help dry out secretions and a laxative suppository to see if we can get anything out of her that way. We are also having to roll her every 2 hours or so because her blood is pooling on the side she is laying on and she gets really swollen on that side. Even her eye gets big and puffy.
If the Lasix doesn't work, we don't know what will other than holding her feedings. We are keeping her at home and treating her here. We don't want her traumatized by taking her to the hospital. That's not how we want her last chapter of her life to be like.
Our hospice team is working with the doctors so that we can do everything we can for Kaitlyn comfortably at home.
Right now she is asleep and getting a breathing treatment. Hopefully the Lasix will start to work so that she can get rid of some fluid and her heart won't have to work so hard!
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| Resting well |
The Lasix did not work yesterday like it should have. She only had one wet diaper. We held her feedings for the past 24 hrs and are continuing to hold them until some of the swelling goes down. Feeding her will only make the problem worse.
So today we are doing Lasix twice a day, albuterol breathing treatments to help open her airway and dry her lungs out a little (as long as it doesn't raise her heart rate too much), 1/2 of a scopolamine patch behind her ear to help dry out secretions and a laxative suppository to see if we can get anything out of her that way. We are also having to roll her every 2 hours or so because her blood is pooling on the side she is laying on and she gets really swollen on that side. Even her eye gets big and puffy.
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| One of my favorite bows! |
If the Lasix doesn't work, we don't know what will other than holding her feedings. We are keeping her at home and treating her here. We don't want her traumatized by taking her to the hospital. That's not how we want her last chapter of her life to be like.
Our hospice team is working with the doctors so that we can do everything we can for Kaitlyn comfortably at home.
Right now she is asleep and getting a breathing treatment. Hopefully the Lasix will start to work so that she can get rid of some fluid and her heart won't have to work so hard!
Praying, praying that what you all are doing will help so that Kaitlyn can stay home.
ReplyDeleteSending prayers out to your sweet little girl ~ and prayers for strength in this time of need .... GOD BLESS!
ReplyDeleteMichelle Schaffer
Praying for sweet little Kaitlyn!!!!
ReplyDeleteAli Reardon
Prayers...and extra prayers....along with a big hug.
ReplyDeletePrayers upon prayers to Miss Kaitlyn and you. I trust God will guide you and provide strength and conviction. We love you!
ReplyDeletePrayers for Kaitlyn to be comfortable and strength for her and the family to get through this time of need. She is a sweet little girl and I will continue to pray that she will be comfortable at all times! Big hug and kiss going out to lil Kaitlyn.
ReplyDeleteYou are wonderful parents and doing everything just perfect to help & keep her comforted & give her the chance to fight this...with prayers and love. Keep faith & hope and your strength.i..love your family from afar!
ReplyDeletePraying for Kaitlyn and all of you. Hospice is a great thing to have available and I'm thankful you have their support. I appreciate updates, no matter what they relay. ~Anjel
ReplyDeletePraying Kaitlyn is able to stay home and rest comfortably. Since learning of this sweet little girl from a friends post my husband and I have prayed for her and your family daily. We pray God surrounds you with his comfort and peace!
ReplyDeletePrayers never ceasing for sweet Kaitlyn and all of you. Thank you for the updates. We will never stop sending prayers and love your way.
ReplyDeletePraying for your darling Kaitlyn and for all of you
ReplyDeleteWe held Jessica's feedings also per our hospice nurse and it was the hardest thing to do and after she passed I felt very guilty at what we did. Knowing now, she needed that and I sit here and read what you are going through I feel at ease more knowing that you are making the same decisions as we did. NP is awful and our darling daughters didn't deserve this.I think of you and your family all day and say many prayers for strength and comfort. Give that precious baby a kiss for me and hold her tight. You two are doing amazing things for Kaitlyn.
ReplyDeletePraying for sweet Kaitlyn! She looks so precious in her pictures.
ReplyDeleteHolly Hartzell
Thinking of you all. You are wonderful parents. We are praying for peace and comfort for your little angel and for the 3 of you. God bless.
ReplyDeleteI think of your sweet girl and family constantly and I've never met any of you. I'm praying for your family as you experience this together. Much love from Spartanburg! Shannon
ReplyDeleteYou will never know much the story of your precious family has touched my heart. Praying for Kaitlyn and your entire family. My God give you strength and fill you with his love and peace. Also praying that God will keep Kaitlyn as comfortable as possible until it is her time to enter her new home in heaven.
ReplyDeleteGod bless you all!!
Kaityln is in the best place she can be,your arms. You are doing what you need to do for. A loving touch brings such comfort. It's times like this that I look to Calvary. Our Lord hung there in great pain without one touch of comfort. Those he loved had fled and only a few remained with Him. The Father that He had always had such perfect accord with had to turn His back. He did this to assure a place for us in Heaven forever. As believers, we are assigned a small portion of our eternal life to live here on earth.. Because of Calvary, we never have to say goodbye. Instead we say goodnight, We will see you in the morning. You and Chip have been wonderful parents for Kaityln. She is surrounded with love. As you walk this step of your journey, I hope it helps to know that your family is bathed in prayer. You were chosen to be the parents of a child who has shared more of Jesus than many who have numerous years to do so. She and you have been such an inspiration to me. You have shown what Job said when he said, " yet though He slay me, yet will I serve Him. " we may never meet on earth, but I will always consider your family as special members of the household of faith. Shalom
ReplyDeleteShe has the most beautiful hair, I love seeing all her new bows each time you post. It is heart warming to see the time you put forth in making sure she is still able to be a little girl despite her illness. As always many prayers and much love to you and your family.
ReplyDeleteGod Bless.
Nicole
All of our love and prayers are with you
ReplyDelete