So looks like our lear jet has been commissioned for tomorrow, Saturday, as long as Max continues to maintain his oxygen levels. Today they did chest x-rays to ensure there was no evidence of pnemonia (since all that stuff is hanging in his lungs). Pnemonia was a no, but there is still some upper right lung collapse and yuckies hanging out in there. In other medical news our Robinul drama continues. This drug has been the biggest pain in our butt for the past year and it is by far Max's most vital medication. This is what dries out his secretions, so that Max does not aspirate on his own saliva. Tricare will now only pay for it if it comes through an infusion medical company (technically it is an infusion med, but can be given via mouth or g-tube too). Well, it took about 3 months to find an infusion company that carried the medicine with lots of help from Max's Tricare case manager. Curascripts was the winning company, but they are the biggest pain to deal with, because no one there knew they carried the med. It was SO IRRITATING to call and speak with the different customer service (or lack there of) people. Then Abigail called and she was awesome and has been on her "A" game every month! She was getting us the meds no problem and finally we could breathe a sigh of relief and not pay $300 a month out of pocket to order it ourselves at Target (yep, could go down the street to Target, but Tricare wouldn't pay for it there). Now I'm not knocking Tricare (cause lets face it, they pretty much rock out Max's necessities), if Curascripts could get there stuff together I have no problem ordering it through the mail. What I didn't count on was the FDA shutting down about half of the infusion med manufacturers making this medication virtually impossible to get right now. Needless to say we spent the afternoon working with the clinical pharmacist here at the hospital on a suitable alternative. Max is now testing a motion sickness patch that also dries secretions. The biggest side effect is apparently dizziness so if Max starts driving his chair like a drunk man then we will be back at square one.
So it looks like we had a pretty busy day, you know taking care of Max, networking an airplane with two hospitals, and researching new meds. I mean, hey, this is a pretty average day...well apparently MUSC's parking police thought we needed a couple of more things to do. Last night I got to the van to drive back to Jonathan and Kristen's house for the first full night's sleep in 6 days when I noticed a pleasant little parking ticket for $100 for having no expiration date (it's there, but faded) on our handicap placard. First of all the only reason I use a handicap space without Max is because we have been getting his chair in and out of the van during the day so that he can sit up for some of his treatments and to help his lungs drain, other than that I would typically park in a regular spot. There isn't room to leave his chair in the hospital room and its not really something you can leave in the hall of an ICU unit. Anyway, just want to point out that this is something we don't abuse. Secondly, the blue handicap placard is for permanent disabilities, so why exactly does it need an expiration date? Thirdly, our van screams handicap. There is lettering on the back explaining that it is ramp accessible (and asks drivers to park a sufficient distance away, which no one ever pays attention to), we have an MUSC kids license plate, and we have cure SMA stuff all on the back of it. Fourthly, I know this is getting long, but I am seriously annoyed, I noticed the date was fading, but we are changing our plates to FL anyway and I thought it seemed dishonest just to re-write it on there, because I could theoretically write whatever date I wanted. So this morning I called the Parking Office at MUSC, because it said all appeals must be made in purpose Mon-Fri and guess what we are leaving Sat. morning on a flight. They seemed really understanding. They just said to come down and they would dismiss it, so during one of Max's treatments, while the nurse and respiratory therapist were in his room I went to the office. Now this office was two blocks down the road and I got there and they wanted to see the actual handicap placard. Two problems, no one told me that and Aaron had taken the van home to get some sleep. I figured why did I need it, whether or not is existed was not in question the date was, but they didn't even ask on the phone, they said it was taken care of the minute they heard we were patients and not faculty or students. AND if I brought the placard with me how could I legally park in the space????? Let's just say Traci without good sleep, sick kid, and no lunch did not make for my most shining moment. I seriously wanted to wring the girls neck, which I grant you is an over reaction seeing as I just have to mail in a copy of the placard with my ticket and it will be dismissed. I guess what irritates me is that I see abuse of handicap parking spots all the time and there are many times when they park so poorly we are not even able to access Max's ramp to load him and I have NEVER seen a ticket on any handicap vehicle at MUSC. I am all for curbing abuse of handicap parking, because it is extremely frustrating for us to see a person swing into the last available ramp accessible spot in a parking lot and watch them hop out of there jacked up F-250 (not that this has ever happened :) ). I mean really dude you couldn't have used the spot three spaces down...
Okay, enough venting, on to better topics or at least more amusing...
We thought Max would at least be excited to fly on an airplane, but no such luck. He had a minor meltdown. I think his breaking point was the ambulance ride to the airplane and the inability for his chair to ride in the plane. We were able to convince him that everything was okay by explaining that Jeremy the Jet Plane from the Island of Sodor (moms of little boys are nodding their heads in agreement and understanding) has been sent to pick Max up as a special mission from Sir Topham Hatt. Max is very excited about this prospect. Everytime the doctor has come to check on Max he has asked if his plane is ready yet. Lets see, he wanted to make sure the wings were open, and the brakes and landing gear work. Ah, the son of a pilot. He is all over doing the pre-departure checklist. The ride is supposed to take an hour and ten minutes, not to shabby for a ten hour drive. I mean heck, why haven't we thought of this before. Looks like I get to be the lucky parental companion and Aaron will drive back to FL.My parents are going to be meeting us in Pensacola and Aaron will be there...much later.
Please pray for our safe travels tomorrow and also, but obviously not nearly as important, our open house is this weekend and we are really hoping for a good turn out and hopefully are able to sell it quickly.
Peace and Good Night!