Well, here we go. They trialed her off ECMO and she was able to come of for 50 minutes until they put her back on the machine. On all previous attempts she went down within a matter of minutes. So being able to sustain herself this long was encouraging. However, every few minutes they draw blood and check different levels of things. One level is called lactate and it shows how her body is profusing blood to the rest of her organs. They like this level under 2 and she was at about 3.8. This is not good. So, it seems that they now want to tighten or band her SANO tube to see if that will effect the amount of blood profusing to her lungs and therefore to the rest of her organs. If they do this and it does not change her lactate levels, then they will know that it is a heart function issue and there is nothing they can do about that.
I think the plan at this point is to wait another 24 hours and trial her off again and possibly tighten the SANO. If we have learned anything here it is that you can't plan anything and every day is different. So I think the rest of the day will be fairly non-eventful.
I know we keep saying this but we really appreciate all of our friends and family who have supported us and we love reading your comments and emails. It sustains us through these hard days. THANKS!
16 comments:
Another miracle! Maybe this is the start to her recovery? We are still praying for her (hoping for a miracle) and praying for you and your family that you will be comforted and at peace at this time. oxoxox
Okay.. I'll take it.. I know she is still very critical and the changes are not big, but I'll take the little steps to getting better... One little step forward today...
We know too well that in the PICU you don't even take things "one day at a time" instead it truly is "minute by minute". We understand the ups and downs. We would get a plan in our head of the only possible senerios for Kaidnece (and honestly they were really the only senerios medically speaking"). At times we thought that we had faced all of our trials and that things would start getting better. Other times We were ready to face the worse and then thankfully a door would open. The ups and downs are VERY hard. We are grateful that Little Gracie is holding on and that another door has opened and allowed you more time together as a family. I believe that Gracie is hanging on the best she can because she loves you so much.
With Hope and Love,
Shauntelle & Kaidence
This is good! I would just like to say that I hate the roller coaster ride! You really are on a completely different time frame and it very much a waiting game with these heart kiddos! We will keep up the prayers on our end, you keep loving that little girl!
oh my gosh you guys, you have been through so much already! I'm glad that today is not the end and we'll take whatever time we can get with her. We'll be thinking of you every minute!
WOW! We can't imagine what you are going through. We love you guys and pray that you will have the strength to hold on tight, as you continue to ride this roller coaster! We are strengthened and amazed by your faith! Love- Coccimiglio Crew
I'm so glad to hear that you have another day with your little one! What a blessing! I'm sorry you have to experience the emotional up and down ride but we are all holding out hope that this might be that up turn that doesn't have a down side.
Still praying for you-
The Laurences
Thinking about you all. I hope her little steps keep coming!
Melissa - IHH
"A Little Miracle!"
"A Little More Hope!"
Thanks so much for the update at such a critical time! Tiffany had just called me and I have to say I was scared to death to answer the phone. What a little trooper Gracie has been today! Way to go little one...stay strong. Our prayers are being heard. Keep kissing your little princess for all of us for another day...
Leslie
One step at a time. An hour seems like big improvement. A tough little girl you have there. The talent is incredible at PCMC. What better place to be to fight this fight. Amazing to see you encouraging others through it all. Keep strong!! I keep praying. I believe as you do that God has the plan already worked out. God bless
Wow-she is a little fighter!! Still praying in San Diego!
Shari
Wow-she is a little fighter!! Still praying in San Diego!
Shari
I have been a wreck all day waiting for the outcome and I'm so happy to hear the encouraging news!! It is wonderful to know that ya'll get to continue to spend more time with her.
Love, Kristi
50 minutes! Wow. Nice job Gracie. She is so strong. Michele you did an excellent job during your pregnancy getting her so strong for what was ahead. Thx for the updates.
Hang in there~hugs to you all!!!
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