I know I haven’t provided a lot of detailed updates lately, and that is partly because it was hard to describe what was happening with any accuracy since there was a lot of one step forward, one step back action going on.
Overall, these good things have happened:
- Landon has gotten rid of his chest tube! (After draining 1 liter of fluids!!!)
- Landon came off of the ventilator!
- Landon has weaned from 8 liters of oxygen to 4, to 2…all the way down to 1/2 liter!
- Landon has perked up off after lowering/removing some meds, and is “himself” in terms of alertness, using his soft sweet voice, squeezing fingers, and nuzzling when your face is close.
- Nolan held steady on 1/2 liter, and as of right now…is on room air and holding.
We have these hurdles remaining:
- Nolan needs to remain strong overnight and show that he can remain on room air, even in a deep sleep. If he does this “you know what” might happen tomorrow. But don’t say it out loud.
- Nolan has also seen an increase in seizure activity. We hope it is because his system is down…but that will require further monitoring at home and discussion with neuro.
- Landon is still having some problems. His pleural effusion is still present, but hopefully stable, and eventually reabsorbed by his body. That is being monitored very closely.
- Landon’s blood is very strange. His hemoglobin dipped again, resulting in his second blood transfusion. His albutum protein has dipped. Hemotology is now also involved, and seems to think this is still all stemming from the initial illness/aspiration/event. but since he has been sick for so long (3 weeks now) his blood is displaying behavior similar to a chronic illness. But it can be overcome with time.
Back to the good news:
- They are roommates!
- They are happy!
- Landon, despite still being very sick and mysterious, looks like himself, and loves like my Landon.
J and M you two are amazing parents. Prayers for you and the little ones. So glad to see L and N improving.
Jan Hunn said:
Nancy/John Arnold said:
So happy for them AND you guys that they are together in the same room….can’t imagine what it is like for you and Justin….you are simply the best~~~~~~~~~~~~~S&N
Aunt Pam said:
Love these little bundles of joy….and their family……God is good!!!!
Paula O'Brien said:
Thank you for sharing your miraculous family journey with us.
Jean Barker said:
Precious. Amazing Mom and Dad.
Beverly Uhler said:
So happy for the boys, they are together again! Sometimes the love of family helps much more than all the meds and tubes. You are great parents and it is wonderful that you make time to keep everyone informed. You are very, very special people. We are praying for all of you.
Sheila Blevins said:
So thankful they are both improving. Continued prayers!!
They just melt my heart! I’m so glad they are improving!! Always in my thoughts & prayers!!!
Greg, Tina, Mikaela & Megan said:
Love the pictures! So glad to hear they are doing better. Keep you guys in our prayers♡
Love hearing from you each time you can blog. Praying for my little buddies and the family. You and J are strong parents and I know God is watching over the boys. Sending love, Helen
So happy for improvements. What a wonderful, amazing family…….the Rinkers are! ❤
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