Where to Begin

The last few days have had their ups and downs. So much so it's been difficult to blog because I've either been sitting at his bedside, asleep or working. Sunday was a good day and we were able to talk with him more. Well, actually, we talked and he blinked his eyes for yes and no. We had good breathing trials to exercise his diaphragm to prep him for the vent removal which we hoped would be on Monday. At 8pm on Sunday a lady from my mom and dad's church came to the waiting room and asked us to come down to the chapel. When we arrived there were 25 people from their church who had come to pray for dad and our family. I could not stop crying. For an hour we sang and prayed and lifted up my dad to God for healing. Our biggest prayer was for God to breathe for dad to help get him off the vent and that God would calm his anxious mind.

Monday rolled around and he had a great breathing trial! My mom got the staff to do the trial 'her way' which was the evidence based way that she has researched and taught for years. It went soooo well. The only issue was that the vent tube had irritated my dad's throat and caused it to swell. We had to wait another day until the steroids they give him reduced the swelling. If that darn swelling wasn't there he would have had it pulled out. I had to go back to work but when I came in around 5 pm he was wide awake and wanted to try to write so he could communicate with us. Unfortunately we've had to keep his hands tied down because he is a 'vent-pull' threat to himself. So we did this alphabet thing and while it was completely frustrating to do we did figure out that what he really wanted was to have his hands untied; which we could not do. But we were able to talk to him about what happened and fill him in a bit on the last few days. He responded appropriately, gave us facial reactions with his eyebrows (which were so cute) and even made us laugh. At one point he seemed to get sleepy and my mom said something along the lines of 'we'll have to repeat things because it's like that Groundhogs Day movie in his mind.' My dad's eyes popped open and he gave my mom a funny look and shook his head at her. We all burst out laughing and we were so excited. So while he did not get his tube out God gave us an even better gift, the knowledge that my dad was completely mentally intact. We were all waiting with baited breath on what God would do today.

I think we were not emotionally prepared for today to be a total flop. A new respiratory therapist was on and she did a horrible job. In fact it was so bad the nurse yelled at her and demanded she did it again. But by that time my poor dad was already exhausted and ended up failing the test. Both tests were done before visiting hours opened so my mom was unable to be there with him. This also increased his anxiety and caused him to fail. We also learned that the respiratory staff just implemented this new vent weaning process that is completely non-evidence based and goes against all the leading experts protocol in ventilator weaning (including my mom's). Even our Pulmonologist hates the new protocol but cannot do anything about it. We were all so crestfallen, especially dad. The doctor came in and decided to hold off on putting in a trach for one more day. He hoped that it would give dad an extra day for the steroids to reduced the swelling in his throat and rest up for a better trial. Even he agreed that the trial was done poorly and insisted that my mom be present next time. He also was extremely upset that they still had the neck brace on him. This was supposed to be taken off over the weekend and it didn't happen. He believed that it was contributing to the poor breathing trials. So he demanded that neuro/trama get up to the ICU and take the brace off. Thank God! And for the final trial tomorrow my mom is going to put down an ultimatum. She is going to refuse consent for the trach if they do not allow her to be present at the breathing trial. Trust me when I say, it has been duly noted by the staff.

So my prayer warriors I am calling on you for help. Please pray that tomorrow's breathing trial goes well. I really, really, really do not want my dad to have to have a trach. I worry what that would do to his mental state since I know that he is currently living his worst nightmare. Pray for calm that dad would be focused and listen to my mom's instruction and support to get through the trial.