Sorry for the delayed post. I know everyone is antsy for an update, so here you go…
First and foremost, there has been no change in condition for Francis or the blockage. Francis was able to rest a lot yesterday thanks to some medication for the hiccups. He’s been awake and up today, even sitting in the chair some. He even felt like washing up, so we spent time carefully working around his new hardware to get cleaned up today.
Yesterday I spoke of frustration trying to get the two bureaucracies talking. It appears that they have made initial strides toward a transfer if that’s the best option at this point. With the foundation in place, the paperwork processing will hopefully move much faster if the decision is made to transfer.
Dr. Hasan Mohiuddin, one of the doctors on the team here in Tallahassee, also spoke with Dr. Fournier at MD Anderson yesterday afternoon. Dr. Fournier expressed his desire to see the CD personally. As a result, Dr. Mohiuddin ordered radiology to work up the CD and have it returned to the nurses’ station on Francis’s wing of the hospital if it couldn’t overnighted directly.
The charge nurse let me know the CD was there. She had been
bugged by me working with me all day, but not without a lot of pushing and prodding on my part. When it came to the CD, I saw that I had finally won her over. She called and yelled at radiology about how ridiculous it was that they couldn’t send the CD overnight themselves. Radiology was less than helpful and I was able to bond with the charge nurse in our disappointment with their helpfulness.
I personally took the CD to the FedEx store. At least I know it was done right and I had the tracking information. It arrived in Houston at 10:30 this morning, but we’re still awaiting word from them.
The wait is excruciating at this point. The doctors on the team here are wanting to start nutrition, while we’ve been told by others that Dr. Fournier doesn’t want them to do that or anything until he sees the scan.
We just saw the attending physician. I wish I could report that she had a lot of news, but she knows about as much as we do at this point. She explained that they want to start Francis on TPN (total parenteral nutrition) by IV today. He’ll get that tonight at 8:00.
Since he hasn’t eaten since Thursday, this will be much needed nutrition and hopefully will help his energy level improve.
The biggest thing we need right now is some direction from MD Anderson and direction with enough working time in the day here to move the bureaucratic wheels as needed.
When we were here before the move to Mayo Clinic, Jacksonville, we faced the frustrating experience of trying to get a transfer done before everyone leaves for the day. The case workers leave at 4:00, so we have a hard deadline with that and we’re also an hour ahead of Houston. This is causing a great deal of anxiety for both of us.
Here’s the updated list of specific needs if you’re keeping track…
1.) Blockage to disappear or diminish – still no change here.
2.) Pain controlled and Francis comfortable – still well managed.
3.) Hiccups go away and stay away – thanks to medication as needed we’re able to address this. So far today without medication, he’s only had a 2 or 3 at a time a couple of times an hour.
4.) Rest for Francis – again, the hiccup medication was immensely helpful on this. Planning to nap this afternoon, barring too many interruptions. Naps also helps pass the time.
5.) Wisdom and cooperation for the doctors and medical staff – much improved in this area over where things were this weekend and yesterday morning. Never helps to keep improving this area, though.
6.) Grease the bureaucratic wheels – we may need this one, big time, in the near future.
7.) Patience for both of us – I now realize this list isn’t necessarily in the order of importance because this would definitely be up there at the top today. If I could, I would physically shuttle between Dr. Fournier in Houston and Dr. Mohiuddin here. I could really use a teleporter if anyone has a spare one in a closet somewhere.