Porter is three weeks old today. Praise God!
Over the weekend Porter's creatinine level continued to drop (1.2 on Saturday, 1.0 on Sunday, and 1.0 this morning) to the delight of the nephrologist. He decided that he would suspend dialysis activities for at least 24 hours to see what happens. This is huge because she no longer needs to be plugged into the peritoneal dialysis tubes, so we can walk with her a bit further and pass her back and forth more easily. Of course it is still too early to tell what this means as far as a timeline, but this is a step forward. I will keep you all updated with her progress later in the week.
We did have a small scare on Saturday morning, in that we thought she had an infection from the dialysis. For those of you who have not googled "peritoneal dialysis", dialysis fluid is inserted into the peritineum (bag that holds your intestines) and sits there for almost an hour and is then drained. It should be clear and look like normal human waste. If it is cloudy, then that usually means infection, which is a common concern. Her first two drains of Saturday were cloudy. Thankfully, her blood tests and the lack of tenderness in the belly led the doctor to believe she had developed an allergy to the plastic tube in her belly. He said "she maybe young, but her body knows that it should not have plastic in it". They still gave her some antibiotics for the day, but everything cleared up, she was fine the rest of the weekend, and is no longer on the antibiotics.
A lot of people ask about Luke as well. I couldn't be more proud, as a father, of the way he has reacted to this situation we thrust him in. Of course, he is spoiled rotten by our loving mothers, but it is clear he senses what is going on and thankfully does not act in a way that makes us feel guilty about not spending as much time with him as we would like. As melodramatic as Sarah and I are, it is nice to have a child who is, for now, easy going. Sarah and I are blessed to have him as a son. Knowing that he soaks up every comment we say on the phone or at dinner, I want to ask him soon what he knows about PK and why she is in the hospital just to see.
Yesterday was promotion Sunday, so I took Luke to his new Sunday school class and attended Sunday school myself for the first time in a month, as I can now tell our story without busting into tears. (Sarah joined me for the service to hear Dr. Gary Chapman preach on attributes of a "functional" family.) This week's Sunday school lesson was on Psalm 40 (Note: modified by U2 in their song "40"). It would be hard for me to find my own words that better describe the events of the past three weeks, so I will end this update with the first three versus of the pslam.
"1 I waited patiently for the LORD; he turned to me and heard my cry. 2 He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. 3 He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the LORD."
The Prayers:
1. Pray that creatinine level continues to drop even without the assistance of dialysis and that dialysis does not return.
2. Pray that the seizures were an isolated incident and do not return.
3. Pray for strength for Sarah. We are in our fourth week of going to the NICU every day and, Sarah has been spending a lot of time up there. It is getting very difficult to leave each night.
4. Pray that Porter has the strength and determination only God can give to keep fighting.
We are continually praying for PK and your whole family...
ReplyDeleteBecky and Brett Fenn
You don't know me, but my daughter Lucy Murchison is sending me email updates on Porter via Amanda.
ReplyDeletePlease know that I have lifted your daughter up in prayers many times. Your family comes to my mind often and I pray for your peace of mind and strength of spirit.
I promise to walk with you with a prayerful heart.
God bless your family.
Marybeth Reid
Prayers to you and your family! Parker got to play with Luke at the pool on Sunday, and Luke was all smiles . . . until he was informed by Papa that it was time to get out and eat dinner. I read the earlier post about PK's iPod mixes, and if you are playing her a lot of James Taylor, I hope that you are including "Secret O' Life." When my pregnancy with PJ was in jeopardy, and every day of not knowing what would happen felt like an eternity, that song became our mantra:
ReplyDelete"Now the thing about time is that time isn't really real
It's just your point of view, how does it feel for you
Einstein said he could never understand it all
Planets spinning through space, the smile upon your face
Welcome to the human race."
Welcome to the human race, Porter Kate!
Kathryn McGlinchey (and boys, big and small)
Dear Sarah,
ReplyDeleteCristina has been nice to keep me in the loop about your precious Porter. Your emails are so moving. It is a privilege to witness your steadfast faith and the amazing grace by which you have shown the extraordinary power of a mother's love. Please know I am praying for Porter, you, James and Luke. I find myself thinking about her throughout the day. My running group is even on board with prayers for Porter. She is beautiful, like her mother!
Thinking of you,
Carol de la Torre
Birmingham, AL
Hi Sarah,
ReplyDeleteThis is Kristi(Drake)Phillips. I've been receiving emails via Keyea Webster about PK. Just want you to know we are constantly lifting Porter Kate and your family up in prayer. Praise God that you were able to bring her home.;) We'll continue to pray for you guys, and I enjoy seeing the list so we can pray more specifically.
~Kristi
Jackson, MS