I have debated whether to write this update now or let my spirit "settle" before I compose it. Yet in the spirit of the honesty in which I have sent the past updates, I'm going to provide the update as it stands today through the looking glass that I am using right now. Like many of the updates, there has been much activity that has gone on since the last, and now is a time of particular frustration for us. Last week when I wrote, we set an optimistic goal for release this week, which we have done in the past. I think it's time that we stop setting goals and just focus on the "here-and-now" to avoid the accompanying despair when we are still in the hospital week after week.
Before I get to my standard bullet points, I find it necessary to vent a bit. I woke up this morning to the start of a bad week. In addition to all that Ethan is going through (which I will get to), Robin has laryngitis and has been feeling the effects of sleeping on a hospital couch with rheumatoid arthritis. I was to start a new job today (for a company that I have worked with before), yet due to some confusion with paperwork, that hasn't completely happened. Normally not a big deal, the health benefits I was to receive from my new employer were not activated May 1st, and we didn't pay for COBRA for May because I was to have other benefits. This can be a big deal pretty quick and I'm trying to figure it out. As some of you know, I got in an accident (with the hospital parking garage) when admitting Ethan over six weeks ago. After 20 years of faithful payments and NO other incidents on my record, I received a love note from the insurance company stating that I was being dropped due to my "driving record". So here I sit potentially without auto or health insurance. It's been a bad day . . . .
I vent because I want to tell the moral of the story. I was having the worst day of this whole journey this morning, and didn't want to go home, didn't want to go to work, and really didn't want to do anything. I felt justified in my self loathing and was just done with everything, not wanting to talk to anyone (which means things are really going bad for me!). Then, the phone rings. A colleague called to say welcome back to the company that I was starting with again. Yet this colleague is a man who was hit by a car riding a bike 8 months ago, and is wheelchair bound now as a result. Though he lives across the country, he also happens to be an elder in the same denomination of my church, and the updates that his family provided through his ordeal served as a testament to how faith in God is really applied in times of need. I don't know that I would have picked up the phone if it was anyone else, yet when I saw his name pop up, it was a pretty powerful moment for me. There are very few people that I would listen to this morning, and he is one of them. Needless to say, he has reset my moral compass for the day. I think I can summarize our lengthy conversation in a few words -- emotions come and go and are not always properly aligned, so in times like these simply rely on your understanding of who God is and what He says is true. Your emotions will change, His Truth will not.
I know that things could be much worse for us, though not many things are going all that right either. Yet we are still blessed, and are receiving blessings every day, which is more than we deserve.
So now for the rundown:
1. Remember the bad drug that I didn't like (Reglan) and had Ethan taken off of? Well, they accidentally put him back on it again. I was furious, and to make a long story short, he's off of it and I doubt that he will be on it again.
2. Last Friday, we were supposed to have several procedures done on Ethan at one time and under one general anesthesia (since this would be number 7). He was to get his GJ tube, a muscle biopsy, and a bronchoscopy.
2. On Thursday, we were told that he wouldn't get a muscle biopsy, but maybe a a skin biopsy. Then we were told by the new pulmonologist on rotation that the bronchoscopy was a good idea, only to be told 20 minutes later that it wasn't necessary (we suspect a scheduling conflict for her change of heart). Then we weren't going to get a skin biopsy and we were just going to get the GJ tube. Then they weren't sure about the biopsy and were looking into it.
3. Then I said, "STOP". Enough is enough. On the advice of a Mayo Clinic doctor that goes to our church, I called a Patient Care Conference and put all procedures on hold until that occurred.
4. So, tomorrow will be the Care Conference at 2:00pm. This will be a sit-down with all of the involved specialists (pulmonology, GI, neurologist, geneticist, pediatric, nursing, etc.) in one room. We will hopefully clear up our questions, get them on the same page, and help them refine their approach and pay closer attention. I received a list of questions from one doctor, and we will have another doctor friend sitting in with us for an extra set of ears.
5. Hopefully following the conference we will have a clear direction on where we're headed and what procedures can, should, and will be done.
SIDE NOTE: If anyone ever needs to go to Phoenix Children's Hospital for any length of time, here are my thoughts: The nursing care is for the most part phenomenal; the doctors for the most part are above average; and the communication I would rate as poor to completely failing. You need to be your own communication manager -- period. You would expect that there is one, but there isn't.
Insurance, health, job, concern for my wife and child -- not sure what else there is to be stressed out about and hope I don't find out. Your prayers mean more than anything right now, and they are valued. Robin has been encouraged by the visits as well, and it helps her break up the day and keep her spirits up. It is times like these that help clarify the relationships in my life -- whether family, friends, school, church, or work -- and also makes clear who really cares. Fortunately, we're surrounded by wonderful people both near and far, so thank you.
I think that's enough for now. Until next time. . . . .