Friday, January 23, 2015

Appointment marathon

This week has flown by and On Wednesday, I left Fayetteville around 7:20 am with Little Dorrit and went to Little Rock for what seemed like a marathon of doctor appointments. We were there all day and didn't get back home until 10 pm that night. Because I knew it would end up being such a long day, I didn't want to ask anyone from Fayetteville to go to LR with me. Mr. Rochester had to work and my mom had planned on meeting me that day but she got sick. Although I did feel a little nervous about going alone, I thought I could do it and that it wouldn't be a problem. I mentioned this to one of my best friends who lives near Little Rock and she volunteered to accompany me. I am so glad she did because there was no way I could have made it through that day alone and with my sanity. We were so busy that day we didn't even have time to eat anything! Having my amazing friend there proved invaluable because, among other things, she thought of bringing snacks because she thought we might not have time to eat in between appointments, she helped me refocus when I freaked out because I'd forgotten an attachment to Little Dorrit's G-button which she absolutely needed to be able to eat (of course, we were at a children's hospital and the nurses found what I needed but I did experience a few moments of panic), and she calmed an upset Little Dorrit when doctors and nurses were asking me questions. From this experience, I learned I need more help than I think I do. Also, how did I forget to take a photo with her to commemorate our exhausting day!?

That day we visited with plastics, ophthalmology, and the medical home team which included a pediatrician, speech therapist, and social worker. When we arrived at the eye clinic, I heard someone call out my name only to see a dear friend I hadn't seen in years! She and her husband had recently adopted a baby who was also being seen in the eye clinic that day. What a fun and joyful, brief respite during such a busy day!
{Isn't Little Dorrit getting big? She's 13 pounds now!}
Our appointments went well for the most part and we didn't really find out any new information. Plastics said to just continue to let her toes self amputate and that it could take several more months. Ophthalmology was a bit disappointing...I'm not sure what I expect but I feel like every time I talk to a new ophthalmologist they can't tell me anything until they do an exam under general anesthesia. It is frustrating and makes me wonder if something had been done earlier on, if vision in her right eye may have been saved. And this guy was...not my favorite. So, we now have yet another eye exam scheduled to be done under general anesthesia in February. The more I think about it, the more I want to switch ophthalmologists too. Also, I am certain St. Louis Children's sent down everything about our daughter and I didn't feel like plastics or ophthalmology had looked over any of the information that had been sent. 

Although we visited with very capable doctors in plastics and the eye clinic, the Medical Home folks outshined them all. They were up-to-date on Little Dorrit's situation and actively trying to help us. The nurse who is our case manager is top of the line. Aside from being a genuinely nice and cheery person, she really is the type of person who goes above and beyond what her regular job description. And, I love it. She called me several times before we came to Little Rock to make sure they had everything they needed and to help coordinate all our appointments. She came and got us at the eye clinic and walked us over to the Medical Home clinic and also escorted us out of the building afterward. She brought us snacks because by the end of the day when we met with them, I am sure we looked a bit starved and depleted. The morning after our appointments, she even called me to make sure I'd gotten home safely because! Seriously. What amazing care management! 


Jenny said...

Wow! I'm exhausted just thinking about your day. I'm glad you had a friend along to provide support. I hope you find an eye specialist you feel comfortable with and confident about. So important! Thinking of all of you and hope next week is a good one.

NonnieLight said...

You are amazing. You always find the bright and shining moments. I cannot even begin to imagine all that you are going through. Hang in there and know that there are so many praying for you, your sweet baby girl and the rest of your family.

Kel said...

Hooray for your friend who volunteered!!! And for the snacks she brought along!!! The search for perfect doctors feels like such a drain, but when you find what/who you're looking for, they are your saviors and make the hunt worth it.

When people would tell me (back in the day) to "take care of yourself, don't forget, and be sure to get some sleep," I always just laughed (bitterly) and made a mental note that they had no idea what they were talking about. I'm just so glad you have people here and there looking out for you and trying to help ease your burden in what ways they can. You're my hero. Shero. :)