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.