I wasn't much worried about the snow. I had driven those passes hundreds of times and many of those times had been in some pretty significant snow storms. The oxygen, however, was cause for concern.
Our exploratory expedition had paid off. We rolled in to the parking lot at 8:40AM on September 27th, with our briefcase full of moms medical records for the past year (I had spent a LOT of time gathering them). There were dozens of people already ahead of us in line and more people pouring in the door. This was going to be a long day, I could just tell. The day did get awfully long, but not for the reasons I expected.
I had figured with that many people the doctors would be running behind (which we were more than use to). I also assumed, since I was sure they would be behind, that we wouldn't even see a doctor before at least 10:00, even though our appointment was at 9:00. That's just what we had become accustomed to. Some days it's great to be wrong!
Moms name was called within minutes of us getting checked in. Blood pressure, temperature and medication list were reviewed by the "intake" nurse and we were sitting in the exam room WITH THE DOCTOR by 9:05. I was still marveling at the speed at which we had just gotten in to see the doctor when mom began telling the doctor our story including why and how we got there.
Mom told her she understood she was 76 years old and had very severe RA, but since The Lord had let her live she wanted to do it as "comfortably as possible". Of course we were very concerned because mom was unable to take ANY medication for her rheumatoid and had been unable to since she was diagnosed with a staph infection. Prior to the infection mom had been on several pretty heavy duty medications including (but not limited to):
Methotrexate: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html and, most recently, Arava: http://www.arava.com/hcp/default.aspx
This doctor listened, asked questions and listened again while we answered. She told mom "76" was just a number. She also said she didn't think mom looked like someone who should be making funeral arrangements. I was feeling pretty positive that this woman was going to be able to at least help mom with controlling the RA. Although it had not been super active since the infection, after 50 years I couldn't believe it was just going away or getting better. I suspected when (or if) the infection was cleared the RA would become active once again. The doctor drained moms knee and said it didn't look quite right - we should keep an eye on it. We then started discussing what we should do next - I wasn't liking that she started the discussion with "Unfortunately".
"Unfortunately, we're not going to be able to do much for the RA until some of these other problems are addressed", she told us. I wanted to scream, instead I cried. I didn't sob, but the tears were rolling. I wanted to know how we were going to do that, we had been trying for going on 8 months. I was confused. What was she talking about if she "couldn't help"?
"I will pretty much have to take a back seat at least until we can get some consults" she said, and then continued, "I'll see who is available and we'll go from there". With a promise to call as soon as she knew more and had the test results. She sent us off to the lab for blood work and the radiologist for a BUNCH of X-rays and other tests. In less than 3 hours we had more testing done than had been done in all of her hospital stays combined. Even more amazing, before we were even finished with the X-rays we had an appointment scheduled to see an Infectious Disease doctor the following Monday. The Cardiology and Pulmonary consults would "take a little longer".
Wow! There was only one more thing that I had been asking for FOR NEARLY 8 MONTHS that I didn't have after that first visit to this facility. I still didn't know how I was going to get a referral to a GOOD Orthopedist for her back and knee. For now, though, I would count our blessings.
The ID doctor had felt that our current ID doctor (who we like and trust) had things pretty well under control. He took blood cultures and would call with the results. He told us that the course of action would really depend on whether mom was a candidate for surgery (which he doubted with the MRSA diagnosis) on her knee or back. He wanted to refer us to a couple of different doctors for consult and then return to see him and we would decide what to do next. He would have someone work on the referrals to not one, but two top Orthopedists: a spine specialist and a knee specialist and let us know when the appointments would be. He qualified with the usual "it may take a while". I pinched myself (seriously) so hard I left a bruise. I had to be dreaming!
For months I had been asking moms PC doctor for these referrals - in his opinion they weren't necessary. In my opinion - they were a critical component. We would have a lot to deal with over the next few months, but for now we needed to get back home.
As I was getting us packed to head back home, Mom was making plans and setting goals. They weren't the goals she would have set just last week, which might have included things like: being dressed before the therapist got there in the morning; being able to stand at the sink to brush her teeth; or getting to the restroom by herself. They were much bigger, longer term goals than that.
She wanted to see my daughter get married in April; return to her Bible study class; and someday drive her car again (I have to admit, that last one scares me a bit!). More immediately she planned to attend a surprise birthday party which, with the help of my children; other family members and a few friends, I had been planning for my husband.
On Monday October 8th, 2012 my husband of 26 years would turn 60! We were both impressed by his continued encouragement and support, and we were thankful for his willingness to let me stay with my mother without making me feel guilty (I do that without help!). Mom & I were both excited about this party. In addition to being excited though, I had a LOT to get done in the next week. I had only planned on being gone 3 days, not a week - I had lost 4 days already in the planning and execution of said party!
A lot to think about on our drive back home: Our good fortune with the referrals; our future; the party; how much it was going to cost to make all these trips; and, the fact that it can snow a LOT during the winter in the Rockies (and sometimes spring, summer & autumn too!). I also wondered how I could make numerous trips more comfortable for mom.
Mom was in a lot of pain on the trip home, but in the best spirits I had seen in a long time. She gushed about the doctors we had just seen. Mom rubbed her arm where blood had been taken and must have told me 10 times that trip how gentle they had been when drawing blood, "They didn't even leave a bruise".
I marveled at how quickly things were happening.
We had to believe these people could help - it sure seem like they wanted to!
We made a pact on that ride home that we would do "whatever it took - no matter what!" to see this through.
What do you think, can we do it?
Do you think we should do it?
What could be the harm?
What could stop us?
I wish those voices in my head would give me an answer once in a while instead of so darn many questions!