Thursday, February 16, 2012

Looking for a Master Carpenter

***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.


  1. One of our boys left the NICU with terrible reflux. We tried everything but he was still having these coughing spells. One doctor worried about aspiration (fair worry) but he insisted that Aiden needed a g-tube for his feeds. I was in shock. First meeting, no tests...straight to surgery. I ended up making the decision to not go back (with the approval of the pediatrician). Aiden is almost 3 now and doing fine & thriving. I know it is so overwhelming to make major decisions like that. I'm glad you have someone in your corner to guide you along the way. But don't forget that you know Izzy best and what she can/can't do. They just get a snapshot of what is going on in her daily life. So glad the weight has been lifted though :)

  2. Meg and Jer, I don't know of another mom and dad who have taken as much ownership of the situation(s) as you two have. You guys are south wiser and informed than anyone I know. You guys are to be commended for your efforts and your actions as NEW parents. We are so sad we can not come in two weeks. We miss you and the girls so much.. On reference to your MASTER CARPENTER request, unfortunately.....Dr Marcus Welby isn't around any more. To make SURE you get the best help around for the girls AND the parents you MUST be informed. You guys are GREAT PARENTS! I count myself fortunate to have my granddaughters with such caring, concerned and competent parents. We who are directly emotionally involved thank you. I love you both, as do your daughters. Thank you!

  3. Johan and I had the exact same complaint when Madeleine was at children's. I survived by calling a friend who is a doctor with two small kids and she helped me weigh the issues. Glad you found your carpenter!

  4. it's always good to have that one doctor you know you can count on to steer you through the storm. looking forward to more pictures. :)

  5. What a relief!! I'm so happy for you guys! As for the blog look, I love it! Love the larger photos especially! Keep it up!

  6. Recently when I took one of my girls in for a sick visit with weird symptoms and told them what we found online he said "now I wouldn't go online and try to figure out whats wrong with my car and fix it myself, I'd go to a mechanic!" The problem with that statement is that my husband would!! As a nurse I do understand the frustration with the sometimes "over-informed" parent, but I also understand the need to be over-informed and to know what to expect.

  7. That is so fantastic that you have that. I, personally, am going through a HUGE medical issue right now (I just got a feeding tube of my own, but I skipped the NG, and went straight to a G-J tube), and having doctor in your corner who can sit with you and help you through all the decisions, order the home care things you need, etc. is a HUGE help. It is even more true when you're dealing with a child with complex (and multiple, intersecting) issues. This must be such a HUGE relief for you. I'm so glad you found Dr. Andrews. How wonderful for you, Meg, and Izzy.