I Love National Jewish Hospital

We've been home from the hospital for about a week. During that time, Lila was getting better and better until Tuesday. On Tuesday she started trending downhill with her peak flow numbers, her energy level, and her oxygen levels. I think that she has gotten another virus on top of flu recovery. Right now we are having hospital at home. Minimal activity, every three hour treatments round the clock, and every two hour or so oxygen monitoring. She also had a chest xray yesterday and daily doctor visits.

One of the most challenging things from the beginning with Lila and still now is that there is such a lack of consistency with doctors and their opinions. We have our wonderful and trusted primary care doctor but she is only in the office three days a week and Lila needs to be seen more than that sometimes (like right now!). The other doctors in the office are not as familiar with her situation. I've been told by a doctor there that he "didn't believe in peak flow meters." Another doctor there claimed right up front to feel out of his league with Lila and all her issues. (Which I totally understand!!) Another doctor in the practice claimed to think that Lila just needs to be on oral steroids all the time. All these opinions are confusing and sometimes conflicting.

At the hospital we always have different doctors. Different takes, different thoughts.

So this week I have talked to the nurses and doctors at National Jewish Hospital in Denver three times. I talked to them twice while Lila was in the hospital as well. I can't tell you how helpful it is to hear opinions from people whom I trust, who have helped Lila so much already. They cut through all the different opinions and help me know what I need to advocate for. "No, Lila does not need to be on oral steroids again yet." "Yes, peak flows are really helpful for us in knowing how she's doing." "Yes, we can try hospital at home for a day or two to see if she bounces back." It's just a great resource with tremendous expertise and they know her and they know us. One more reason that I am glad that we went. It has made dealing with her conditions so much better.

I told a friend the other day that I have such sadness that so much has been taken away from us with Lila's sicknesses, but I feel like we have been given so much too because of it. "Which is it?" I asked this good and wise friend. She said, "well, it's both of course." And she said that and it hit me like I couldn't believe I hadn't thought of that. They are both true and so sometimes I grieve for what we have lost and are losing and sometimes I am full of gratitude for what we have received. They are both authentic and valid places to be. That's a nice thing to realize.