We are truly rejoicing in this wonderful, huge step! Although we know there's still a long road ahead of us, we feel like the immediate life and death situation that we have lived in for the past three weeks has been lifted. We will still have medical challenges and certainly some more setbacks along the way, but being able to be released from this significant life support system is a huge, huge step in the right direction. We're not done with the miracles we need to see in Clara's life, but we know that today we truly experienced a big one. We would never have thought a week and a half ago that we would even be hearing the words "decannulate." Today for the first time we heard doctors using "when" language instead of "if" language. Things like, "When she goes home...." or "After you're out of the hospital...." It is so freeing to feel that we're on the right path now and that we can begin to envision the reality of our future with Clara.
It would have been nice if we could have just sailed through today with nothing but the joy and relief that we felt after her procedure and not face our next hurdle quite so quickly, but here we are with our next prayer request. A renal ultrasound this afternoon showed that Clara's kidneys are sick. We suspected that there might be something going on with them because her urine output the last 24 hours had dropped significantly and some other numbers that show kidney function were also elevated. The ultrasound confirmed that there are some flow issues in her kidneys. She has also had low blood pressure since coming off of the ECMO pump. For now, they are stopping diuresis to try to give her kidneys a chance to rest a little and have added a couple of other medications (increased epinephrine and dopamine) to boost her blood pressure, as well as giving her some more blood since her hemoglobin was low. Hopefully all of these things will improve her kidneys and get them healthy and working properly again. The doctor tonight said that kidneys are one of the most resilient organs in the body, so we are hoping that hers certainly will be and that she'll bounce back from this quickly to resume diuresis. She's still very very very puffy and we need to get those fluids off in order to continue addressing long-term issues like pulmonary hypertension and weaning off her long list of drugs.
The next day or so Clara will have to adjust to life off of ECMO. She is going to have to learn how to manage many body functions that we were controlling for her, like temperature and blood flow. We know that she's been through a lot, so we are asking God to give her rest and strength to continue fighting the rest of her battle.
We will be moving out of the PICU soon and back to the NICU. While we know that the NICU team is wonderful, we will deeply miss the friends that we have made in the PICU (and will miss the space and privacy of a private room, too). But this is a good step for Clara, so back to the NICU we will go.
I'm trying not to get my hopes up too much, because we'll have to see what kind of shape she is in and how she is responding to external stimulation, but there's a chance that Robert and I will get to hold Clara for the first time tomorrow. If it has to wait awhile, I can wait. We don't want to upset her. But it sure will be sweet to have her in my arms soon.
I'm emotionally spent today. It has been another one of those days of extreme ups (mostly ups!) and some downs too and it sure is taxing. But we are so very proud of Clara and what a momentous day this was for her! Thanks to the many of you who have prayed with us today, celebrated her successes with the same joy and exuberance, and are shouting praises to our Lord for His good works! "Thank you, God" is all we can say, over and over again, and it doesn't come close to being enough.
Rejoice in the Lord always: and again I say, Rejoice. Philippians 4:4
|Clara's big ECMO cannulas|
|Tubes full of blood|
|Another shot of the ECMO pump|
|See how much room we have now?|
|Big empty space. Bye, bye ECMO!|
|Cannulas gone. In their place, a new triple line for drugs|
|It's even easier to get in for those head kisses now....|
|That sweet little right ear we hadn't seen in three weeks.|
Prayers for tonight -
- MANY MANY praises for today's miracle. Thank. You. Lord.
- Blood pressures to rise some overnight.
- Clara's adjustment to life without ECMO
- Improved kidney function without further problems
- Swelling to go down/ resumed diuresis once kidney issues are resolved
- Successful weaning of drugs in the days ahead
- Continued progress with reducing pulmonary pressures
- Continued success with breathing on the ventilator and reduced vent settings in the days ahead....
- We can't say enough: Praise and thanksgiving for all God is doing in Clara's life and in ours too.