The mystery of the big fat baby...

So sorry for the delayed update, was hoping to have more time to devote but Dylan has been sick with allergies/asthma which has kept him home from school. This puts our normally hectic schedule over the top but he seems to be on the mend now and we can hopefully go back to our regularly scheduled programs!

Well our 18 pound miracle child is once again a mystery to medical science....Her massive edema does not seem to be going away. We have had an incredibly, brilliant Dr on the past two weeks that has been running numerous tests to see what is going on. At this point he thinks there must be a blockage in her lymphatic system that is making her retain fluid in her third spacing. He is going to run some more tests this week to confirm. If this is the case then the only thing we can do is pray that the body creates a new "course" for this fluid to flow back to the heart and be pumped into the system ( I think this is correct, still completing my crash course in lymphatic system this week...) There is really no quick fix if this is the case but we sure do appreciate all prayers to see if God can lend His hand again on this one. We will be slow to make progress until it is resolved and all of this edema makes it possible for skin break down and infection. We have been blessed so far to avoid that. We hope to continue.

We discovered after a few days of respiratory issues that Bella has outgrown her trach. We are ever thankful that we can blame this on something else besides her crappy lungs for once! When all of her breathing accessories are functioning properly I think we will really start to make some progress on lowering her vent settings. We have already been able to lower her rate from 50 to 40 and we are seeing improved blood gases. Her oxygen remains around 50% but hoping to be able to bring this down with the new trach and once fluid comes off.

With all things considered the little fighter is holding her own. The additional fluid is not very comfortable so we aren't getting many big Bella smiles these days and she seems to be sleeping quite a bit but she sure is sweet! Praying that the Lord can comfort her and assist moving this process along so we can play again soon...

So that is all for now. We will keep you posted as we know more. Hoping you all are staying warm and healthy! Thank you as always for your continued prayers, when prayers go up blessings come down....

Much love to you all
Telisha