***On a side note, Meg and I were playing with the look of the blog (Meg mostly), as she was really getting sick of the one I chose almost a year ago. Plus, I really wanted to make the photography a larger portion of the blog, that is when I actually have time to process our photos, and giving them just a portion of only the middle column just didn't seem fair. I'm not 100% sure I'm satisfied with the look, but we would definitely appreciate any comments/criticism on the new format, as we're always open to suggestions. It's all about you guys, right? :) ***
Now, back to the real reason for the post today. I'll warn you that today's theme is not a new one. I'm quite sure we've expressed our concern (read complained) with regards to the strategy around Isabelle's short- and long-term treatment plan, or really, lack thereof. Meg and I talk constantly about how we feel like we're the team leaders, responsible for making the overall decisions, after taking input from the team specialists. Maybe that's supposed to be our job as parents, but to be honest, we feel woefully under-qualified to be making those types of decisions.
What makes it even more frustrating is when certain healthcare practitioners make comments like, "Oh, I can see you've been consulting with Dr. Google." Heck yeah we've been consulting with Dr. Google. If we weren't then we'd be completely in the dark about the types of decisions that we'll need to start considering if Izzy doesn't make improvements and is still on her NG tube over the next three months. It's become very apparent that the medical field is extremely fragmented in their approach to patient care. One specialist has a hammer, so everything is a nail. Another has a saw, so everything needs to be cut. I could go on, but I'm sure you get the point. From a parent's perspective, what this means is that we essentially are getting the results from a Google search spoken to us by a person instead of having to read about it online, but the responsibility still lies on our shoulders to know which approach is best for our daughter, all things being considered. What we really need is a master carpenter. Someone that has an intricate knowledge of all of their potential tools, but knows when to use a sledge hammer or when it's better to just kick the wall down with their foot. The end result might possibly be the same, but only the master carpenter knows that using a sledge hammer could possibly do more than just take down the wall. It may actually affect the integrity of the home. It may not be the perfect metaphor, but neither is the sea of uncertainty we've been swimming through lately.
Enter Dr. Bree Andrews. Looking back, the time when we felt the most confident in our girls' care was when they were in the NICU. Yes, we didn't always like the mixed messages we sometimes received when it came to some of the smaller details, but we never worried about their care or their future when they were under the supervision of the Neos. Now, we really do love our pediatrician, but Neos seem to offer something completely different that one specialist can't provide--a complete and consolidated view. At least that's what we were hoping we'd see from Dr. Andrews, who came recommended by Izzy's surgeon, Dr. Liu. During a recent follow-up visit, Meg mentioned some of the difficulties we were having with all of the specialists we were seeing. He suggest Dr. Andrews, who is still a Neo, but also specializes in post-NICU follow-up care. We didn't even know that those types of folks existed.
When we met with her, she had a few of the specialists from her team evaluate Izzy. One thing they noticed right away was that her oxygen saturation level was a little low. Not enough to cause serious concern, but enough to make her (and Dr. Andrews) a little uncomfortable. So, now Izzy's back on oxygen, just like her NICU days. We're not sure for how long yet, but we've already noticed a positive difference in her feedings and her general comfort level. Several hours after we returned home, Dr. Andrews' team had already set up oxygen-for-the-home care for us and 20 tanks and a pulsox machine were delivered that night.
Yes, this is actually a pile of oxygen tanks in our dining room. The guy who delivered them suggested we lay them on their side because they have killed a couple of small house pets when they were stood upright and fell over!
Once the assessments were completed, Dr. Andrews sat us down and asked us a very simple question, "What can I take off of your plate to make your life easier?"
We answered, "Everything." Actually, I think we really said, "We don't want to feel completely responsible for all of the decisions that affect and direct her medical treatment."
She replied, "Done! That's my job now."
I felt like one of those families on Extreme Makeover: Home Edition when the truck pulls away to reveal this wonderful gift a family has received that will hopefully make their life a little or a lot easier. As soon as she said that, Meg started crying. Ok, WE started crying. It finally felt like we would have a coach in our corner that would take over responsibility for running the team while we remained vital consultants to the team's overall success. I literally saw the weight leave Meg's shoulders. It was such a wonderful feeling to see her so happy and relieved and know that we wouldn't have to be making these major decisions alone.