Ela is back in the CCU (step-down) unit…again! She is off her continuous infusions and walking a little more. We thank God for the some-what good days she has had here lately despite the fact that there’s still a lot happening inside of her body.
In short, her lungs look slightly better, but they still have fluid. The heart failure indicator number is still extremely high. Her glucose levels are all over with extreme highs and lows. Her immunosuppression numbers are not quite where they should be yet. She is breathing faster than she should be. Her kidneys are still something to be closely monitored. She is also still a ways from her pre-transplant baseline when it comes to walking and doing. BUT she is eating more than she has ever eaten in her life (not like a typical kid her age but I do think it will come). Tube feeds overnight are still happening. We look forward to the day we can get rid of that tube once and for all! Ela is acting more herself and looking better than she did last week, although today was not a good day for her. Some of her meds are being weaned, but it looks like she will be on about 10-11 medicines for a while. Her oxygen sats are holding mid to high 90s which is just amazing to see when before transplant she had experienced 60s-80s. Thankfully, the latest echos look improved. The CATH on FRIDAY is very important as the doctors will get a clearer picture of where we are with this rejection. Please pray for this.
Another praise but also request is our boys back home. I (Leslee) got to spend a brief few days with them recently. Our time together is often short, but so needed and very special. I can tell the longevity of this hospital stay is weighing heavily on both of them. As much as we love to be with each other in person, it’s so much harder to leave knowing it will be weeks before we see each other again. Our oldest has referenced a few times just wanting his whole family together. He keeps asking if I really have to leave. Our youngest clings to me literally making sure I am always in his sight. Oh, this is so hard…for everyone. It’s also hard knowing when we should bring them to see Ela again. With Ela’s complications and being so immunocompromised …while also knowing how many germs our young kids could bring to her…We need prayer for wisdom. We want to do our best to be good stewards of this heart. But we know there is a balance in all these things.
Thank you all again for your words of encouragement, the prayers for wisdom and strength, and the numerous ways you have blessed our whole family.
So good to see some smiles. Praying for continued improvement and much grace for the whole family.
A favorite old song of mine…
He giveth more grace when the burdens grow greater.
He sendeth more strength when the labors increase.
To added affliction, He addeth His mercy.
To multiplied trials, His multiplied peace.
His love has no limits, His grace has no measure,
His power has no boundary known unto men.
For out of His infinite riches in Jesus
He giveth, and giveth, and giveth again.
Oh so good to hear sone good things, even though there are many concerns. So thankful mommy got to spend some time with boys too. Im sure thats tough too for all. As usual dont know what to say but we r all praying snd so appreciate these updates. She looks good & happy. What a trooper!
Continuing to pray for your whole family, healing, wisdom, peace rest, joyful moments, and miracles.
May she only have improvements in the upcoming days.Prayers for all of you
It’s so good seeing Ela smile. Continue to be in prayer for each of you.
Ela has been adopted in our church! She and your family are constantly prayed for and asked about. I know these are small steps we are seeing but I can’t wait to report what is happening because I know I will be asked. God continue to shower all of you with blessings.
Prayers for Gods Grace and Peace. We love yall and continually lift you up in prayer. My prayer today is for that little heart. Beating in a new home. May it get stronger every day and settle in for its new life moving forward in little Ela. May you both grow stronger every day. We love you! In Jesus name amen
I am so glad to hear of the improvements. God bless you guys. I pray for you every night.
Oh those beautiful smiles! I’m so happy to see them despite all she is going through, although I’m sure there are still more tears than smiles I think God she is doing well enough to see them.
I wish there were words that would encourage you to keep on keeping on. I don’t possess those words. Whatever it takes to help your girl, your boys, your parents, yourselves…you’ve done your best. You’ve given and done and done again.
“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.”…”Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written..For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord….”
Keep pressing on…Praying for you all
Nostly goid news and love the pics of Ela! Pray everyday for all of tou!