Kyara has had a very quiet day today and a restful night last night, yeah! In fact, today her heart rate never got above 120s and at times when she was sleeping, it would drop into the 70s. Thank God that she was finally getting some good rest. I have noticed that when she is uncomfortable, she keeps her hands and arms bent way up high on her chest, almost under her chin. When she is resting comfortably, her hands drop down by her sides more. She is not able to completly straighten her arms due to muscle contractures, but they are closer to being straight when she is comfortable.
Today Kyara has swelled up like a balloon. The doctors said they gave her extra fluids while she was sick, so that could be what is causing all the swelling. Her poor toes looked like sausages. Her face was extremely puffy, and infact her whole body looked very puffy. The skin on her feet was stretched so taut this morning, I could not pinch up any skin. By tonight, I could almost pinch some skin. She has peed ALOT today, it has just been all or nothing. She went for 4 hours without peeing at all, then within an hour and a half, she peed close to 800mls! That is almost a liter of pee! I think she is moving the fluid out of her tissues and getting rid of it, so I hope by tomorrow more of the swelling will be gone.
Speaking of tomorrow... the doctors are planning on doing a contrast study of her colon tomorrow morning. They want to make sure they are not missing any obstruction or anything before sending her to Atlanta. Dr. Coran said he doesn't think that is the case, but wants to make sure. While we are downstairs for the study, the doctors are also planning to place a larger rectal tube. The one she has keeps getting clogged, so it is not as effective. Also the one she has is very flimsy, and actually has kinked some, so again, not as effective. Hopefully the new one can help release more of the air that seems trapped. Her belly is quite distended and it just looks uncomfortable!
I am sad that we are going to be here over Easter weekend. I never in my wildest dreams thought we would be in Michigan this long. God knows best, I will trust in that.
4 comments:
Glad to hear Kyara is getting some sleep - even if it is not completely consistent. Hopefully you will be home soon! I know you never thought you would be in Michigan this long - neither did any of us. Give Kyara hugs and tell her we will see her soon.
Love to all,
Ms. Michelle and family
The understanding of the length of time all this has taken will be revealed to you. There is reason for everything, even those things that touch children. God has a bigger plan that awaits you, we trust you will walk in obedience to Him. When you return home, the angels will walk in your home and God's Holy Spirit will cover over you. Blessings will fall on your family and joy will come through your walk with the Father.
I am so glad to hear her heart and breathing rates are getting back down at least closer to normal. I am so impressed by your strong faith and admire how you stand up for what is best for Kyara! You go girl! You are all at the top of my prayer list. Love ya!
We are so happy to hear that Kyara has been more relaxed and able to get the rest she needs. We know she is just resting up for that trip back home. :-)
We are disappointed that you have to be there for Easter too, but we know that God's plan is best. Please feel the love we send as we are praying for a fantastic Easter day for your whole sweet family.
Our God sent His only Son to be sacrificed for our sins, and He rose from the grave so that we can have eternal life. His resurrection that we celebrate on Easter is His miraculous work at best. The same God that loved us that much then, loves us that much now and is hard at work preparing the miracles we are yet to see in Kyara. We are so grateful for His love. We are grateful that He places friends like you in our lives. You bless us each and every day with your incredible love of God, your sweet family, your strength, your willingness to take control, and your patience. We can all learn so much from you guys!
Happy Easter!
We love you all!
Laurie and Josette
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