Captain's Corner

So alot of you have been asking for updates on dad, and I thought this might be the easiest way to get everyone updated at once.

Last Friday night dad was having insurmountable difficulties breathing, despite us feeding him as much oxygen as we possibly could on our system at home. . . and this was at rest.  So we got a hold of his doctors and they told us to get him to the emergency room at Baylor downtown.  So we did.  He spent 6.5 grueling hours in the emergency room with a flood of egotistical doctors and nurses that knew nothing of his condition.  Now that he was on monitoring equipment we could tell that his heart was racing (120+ beats per minute at rest) and his respirations were extremely shallow and frequent (anywhere from 30-60 breaths per minute, when it should be 12-24 ish) After being stuck a couple dozen times with no luck getting an IV in him they finally brought in a surgeon.  Thankfully he was willing to listen to us.  Once we explained Dad’s condition he agreed that he wouldn’t be able to accomplish what he needed to without a radiological guide, and he couldn’t get that without calling in a lot of people who weren’t supposed to work on Saturday.

After the surgeon left the room, Dad, Mom and I had a very serious talk and we all prayed for what the future held.  Then the surgeon came back in and let us know that he was going to leave Dad alone and recommended that everyone do the same until his doctors arrived.  Well the orders arrived at 6:30 to move him to Cardiac Intensive Care.  Mom and I freaked out because we were told he couldn’t have but 10 minutes at a time with visitors, despite the fact that he’s so out of breath he can’t speak for himself.  One particular nurse withstood the full force of my anger (standing tall, chest puffed out) and then kindly asked, “Would you like to know what our visiting hours are?”  Turns out, except for shift change he can have up to 2 people in his room at all times.  We calmed down and let them get him situatated and then snuck in a few minutes before shift change ended.  He was doing fine and the nurse that came out and one other had done a great job of getting him settled and on the proper amount of oxygen flow.  He finally started to catch his breat.  But he was so tired.

His doctors came in and said that he needed a main line port put in surgically to not only get an IV in, but also to start him a new vasco-diolater that would hopefully allow him to breath easier and to take the strain off of his heart.

During all of this Ann is being amazing and taking care of some great women, as three of Dad’s sisters had arrived in from Virginia the same night he went to the hospital.  Ann had never met them before, but did an amazing job carting them around and making sure they were taken care of.

After another day and a half in the ICU they moved Dad to the heart failure/heart and lung transplant floor.  No he didn’t have a transplant, so now you know why he was there.  His heart has started to beat extremely irregularly and we’ve been told it’s the first stages of it’s eventual failure.  The drug he’s on will help keep him breathing easier until then and might prolong it some if the pressure can be taken off the heart.

We have spent days fighting with nursing and general hospital staff as most of them have never seen a patient with Dad’s condition (or at least not this advanced).  They can’t believe he’s on the amount of oxygen he is (30 liters per minute… imagine needing 15 2-liter bottles of soda’s worth of air every minute), and they have no idea why certain things are the way they are (because most of Dad’s soft tissue has become hardened).  We have finally come to an agreement with most of them and we just kick out the ones we can’t.

That said, his doctors have been amazing.  The head of respitory therapy for Baylor is in his room everyday, learning more and more about oxygen treatment from my dad and mom and I… he’s like a kid in a candy store at times.

They have switched dad to a drug that is subcutaneous rather than intervenous and it has a longer half-life and doesn’t have to be refrigerated so that when we get him home it’ll be easier to care for him.   Unfortunately he’s not responding to it as well as he was the other one… but we’re giving it some time.  Hopefully they’ll let him go home sometime in the next 5 days or so… we know he’s never going to be doing great again, but we want him to go home and be comfortable.

So that’s where we’re at.  Thank you so much for all your prayers, it’s really been amazing to see such an outpouring of love from our friends… scratch that, you guys are family.  Thank you!

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