Couch to 5k - Week 5 Day 3!

This morning, I did couch to 5k week 5 day 3! I am making progress!!!

Breakfast, eggs
Lunch, eggs with rice and green peas - YUM!
Dinner - Shake
Two snack bars

Gasparilla 5k for Team Morgan

I have been working hard to get the Team Morgan event ready to go! Morgan is going to walk to gasparilla 5k with a bunch of her friends walking it with her! The shirts have been ordered and the printing will be done next week.

I am working to find more sponsors to advertise on the back of the shirt so that all of the shirt "sales" goes to Cure JM. I think it will be so powerful to have a group of green Team Morgan shirts walking together! I know it will mean a lot to Morgan.

Several others are running the 5k and/or the half marathon the next day. Should be a great time for a great cause! I am so hopeful that one day Juvenile Dermatomyositis will be cured, but in the meantime we can help fund that important research, raise awareness to help kids get diagnosed faster, and provide support for families struggling with it.

http://www.firstgiving.com/fundraiser/amy-gleason-1/teammorgan

Planning for a Doctor's Appointment

I attended the e-patient Dave bootcamp last week, and one of the things that really struck me is his asking if you plan for your visits at the doctor. His point was that you wouldn't schedule an appointment with any other type of professional without an agenda or plan. While I do tend to do this to some degree, it was a big area that hit me that I could certainly do better.

Some ideas of things to plan.

1. Make sure you bring a current list of medications, problems, and allergies
2. Document any problems you are having with as much detail as you can, but summarize it in a table format if possible (date, symptom, comments/triggers, what you tried to do about it)
3. Write out any questions you know you want answered ahead of time
4. If you have found any information on the internet that you want to discuss, summarize it (bring the details or the links to the full thing)
5. Bring any test results that you think are relevant - don't assume they have seen them if they were done somewhere else

If your doctor is tech savy, you might email this information ahead of time so that they can be on the same page as you are before the visit. It is also helpful to document what happened at the visit from your perspective, and you should always get a copy of your note, results, etc for your records.

Remember, the best that you can summarize the data, the more likely they will look at it. If you show up with 50 pages of text, they are NOT going to sit and read it at your visit. Many patients get frustrated because they feel ignored when they bring in a huge thick file. Give them the high points in a table or spreadsheet or at least a bulleted list.

I am going to try to be better about this myself, and I will update on my progress! Please let me know about your eperiences too!

Patients empowering patients

As we go into a new phase of treatment, I am constantly reminded of how valuable the patient network is. I asked another parent for a recommendation of a pediatric endocrinologist. While we were talking, he said, "let me share our experience with you so that hopefully you can avoid it." I listened very carefully as I have learned the power of what other patients or parents know. Even though he had some critical things to say about the doctor, he also said some very positive things. So, it wasn't about the doctor at all which I think is part of the fear that doctors have. They don't want to be trashed for situations that the patient didn't like but were necessary. Instead, this father told me two things to watch out for and to expect at the visit. In fact, he said, now you at least know if those don't happen to ask why. Ahhh....patient connectivity is so very valuable. Now, if we can just make it easier to connect.

Sophie getting into the Christmas spirit

She looks soo pitiful!

Adorable Sophie

Sophie knows how to get food - she brings the bowl to us in her mouth. :)

Hospitals

It has been a long time since I have worked in a hospital, but it never ceases to make me shake my head when Morgan is admitted. The entire process is so spelled out that it is almost exactly the same every time we go - the good and the bad are equally as repeated.

First of all, let me say that we LOVE our hospital, docs, nurses, IV team, lab techs, food service staff, and all in between. This is NOT about THIS hospital. It is about hospitals in general and the crazy time lapse it is when you enter one.

Today, we got a call that we had a bed so we headed to check in. There is nobody in the waiting area to get admitted. We sit there and wait for about 5 minutes until another person walked in to be admitted. THEN, someone comes out to get us. We have to sign the same pages we signed the last 12 times she was admitted. I tell her to save the paper as we have all of the consents and information forms and don't need more. We get a room.

We wander to the room and there is no bed. SHOCKER. This happens almost every time we come. They called us 4 hours ago, and we called in to let them know what time we would arrive. Yet, they were surprised we were "already here" as the tech said. Too funny. Also, the patient who was here before us still had his name outside the room. Interesting. That one was new.

So, we go sit on the couch while the tech gets the bed. He takes her blood pressure, temp, weight, height, etc. He makes her laugh which was nice. Her nurse comes in and does her assessment. Thankfully, they have gotten a bit more modern in that her medications now stay in the system between her admissions. Previously, they had to enter them one by one every single time we came. But, thankfully this is MUCH better.

Her doctor stops by and asks if she is on methotrexate. So much for the meds list staying in. He tells me that he is asking because for some reason methotrexate isn't suppported in the application (it is Cerner). He says that it blows up the system so they have to write paper orders for methotrexate. Surely, not every hospital using Cerner has to do this? Man, I hope not.

He says that he forgot his beeper so he has to leave but he will see her tomorrow. About 3 hours after arrival (admission if for two infusions that run overnight), the IV team comes in and draws blood and starts the IV.  Now, we are sitting here waiting on pharmacy. I simply don't get how an order for a routine admission that has been scheduled for 3 weeks takes so long to process. I know how annoying it is to wait for the pharmacy when it is something more urgent, and it doesn't seem to be any different for urgent or routine. There must be a way to improve the speed of that process so that patients get treated faster.

I will continue later as the night goes on....:)