Ela handled her pheresis and bortezamib treatment well on Monday. Thank the Lord! No one knows exactly what caused her episode last Thursday during treatment. They just keep saying that it isn’t typical. We hear that a lot it seems. The next treatment round will be on Thursday.
Something to be praying about is her kidney/heart situation. Because she has a PICC line and an apheresis catheter, and has had previous blood clots with central lines, she requires an anticoagulant medication. She was getting lovenox. That means injections twice a day that leave her legs bruised all over. So because her kidney function has been better recently, the team wanted to try an oral (well it’s a tablet that’s crushed and given through her G tube) anticoagulant medicine. The oral med can be harder on the kidneys. Her recent labs showed that since starting the oral anticoag that Ela’s kidneys took a pretty significant hit. I’m praying and hoping that this is just her kidneys figuring things out…that her numbers will improve with time. Team will recheck kidney numbers tomorrow or Thursday.
Now, the other part to all this is her heart could really use a little extra help. She’s on lasix to help with fluid overload but she needs more. It’s hard on kidneys though and causes potassium loss. Her potassium is low. So she’s on a med for that but she needs more. She’s had some rhythm abnormalities, but thankfully not significant. The meds that help with keeping potassium (particularly spironolactone)while on lasix are hard on the kidneys. Her immunosuppression meds are also hard on the kidneys. She currently needs more of all these things but she can’t get it right now because her kidneys have already taken a hit from the meds she is currently on. So it’s this whole vicious cycle and delicate balance of keeping both the heart and kidneys happy.
We need wisdom and God’s leading in all these areas. We know God will supply all that we need. Ela still remains looking well and acting like her happy self most of the time for which I am grateful. Appreciate your continued prayers, love, and support.
We are praying with you for a balance in all of this in her body. She is just so amazing and inspiring and we know God has an incredible plan and path for her. God bless you all along this journey. Our hearts are forever with you. Hugs from WV!
We are trusting the Lord to handle this ongoing, complicated medical situation! We are praying for her parents and siblings, too, going through such a stressful time! Much love to you all!
It’s all such a balancing act. Continuing to pray that Ella’s little body tolerates all of the meds. Our Grace just went back on dialysis. It’s hard watching your child suffer, no matter the age! God bless.
Jodi Utter
Praying for you grace sufficient for every day, every hour, every moment. May the Lord’s strength be made perfect in your weakness, in your exhaustion from this overwhelming situation. And may you know the Lord’s peace that passes all understanding that will guard you from anxiety.
Oh my goodness. It’s so complicated! I don’t know how you keep such good track of all that! You should be given an honorary medical degree.
I’m praying that her kidneys and her heart will understand that they are members of the same body and need to get along. May the Lord bring these issues into sync with one another and bring health to Ela’s body. May today’s procedure go as well Monday’s