I'm so sick of hearing bad news that I could puke. It seems to be never ending around here for Tytan. Just when we feel like we can take a breath someone else comes and drowns up with bad news. When you are on ECMO there is always a chance a bleeding on the brain due to the blood thinning products you are on to keep the circuit from clogging. Tytan had a head ultrasound every day Friday-Monday and it showed there was no bleeding on the brain. Well that good news was short lived. We found out today that Tytan is bleeding on the brain which means more brain injury/damage. They will do another head ultrasound tonight and if the bleed has increased he will have to come off of ECMO immediately. If it is at a standstill they feel safe enough to leave him on for a bit longer and try to get him off tomorrow.
As far as Jordan and I go, we are absolutely exhausted. We haven't slept in days. We feel helpless. We have prayed more in the past 6 days than we have in our entire lives. I have fasted for what feels like 40 days straight. I am drained emotionally, physically, and mentally. Every inch of our boy is practically covered, so we can't even touch him. His blood pressure rises when I talk to him, so they even told me I have to limit talking to him so his body can rest. We miss our boy. We miss the boy we handed over to the surgeons. We know he will never be the same and that thought alone kills us, but we are willing to do whatever it takes to keep him here with us. He continues to fight, so we will too!!
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