Dr. Roy to the rescue!

With the exception of Dr. Bernstein at the Children’s Specialty Center, I have not found one specialist in this city who is really willing to get to know Hannah, understand her disease process, and how this disease relates to their specialty.  It has been horribly depressing, as we have gone through almost a dozen specialists in town so far.

One of the biggest question marks is whether or not to remove her trach this spring.  Between her local ENT and her local pulmo, we really are getting no true guidance on what to do.  Both of them are “Sure, let’s do it,” which is great they are willing to consider it, especially after our first pulmo here who adamantly refused to even consider it just because she has Gaucher’s.  But the problem is that they are just looking at Hannah and how she is now, not really understand our concerns and where we have been with this trach issue.

Looking back, to trach or not to trach has, by far, been our biggest decision and biggest conflict since she was 8 months old!   Not only do we have the potential swallowing issues brought on by her Gaucher’s as well as the laryngospasms and other pulmo issues, but Hannah also had prolonged laryngomalacia and vocal cord paresis (weakness).

When we met Dr. Roy from UT Houston (after her first ENT wanted to trach her at 8 months), he was a godsend.  He was the first non-Gaucher specialist who dove into research about ENT stuff and Gaucher’s and monitored her very closely for all of those Gaucher-related items.  He helped us hold off on the trach as long as we could.  (If it wasn’t for her oversedation this summer, I wonder if she still would be trach free!).   He also was a huge personal support system for me while Hannah was hospitalized this summer when Daddy and the kids moved to Vegas — offering to bring me dinner at night, buy me some clothes (since I was wearing the same 4 shirts for 6 weeks), and most of all rearranging his surgery schedule in order to get Hannah’s trach the day after we decided instead of keeping her intubated through the weekend.   Just a good, caring, and compassionate man.

He and I have kept in touch by phone and email since we moved to Nevada, and he gives me an outlet to express my frustration about this whole process here and the lack of caring and knowledgable support.    This past weekend, he asked me if her ENT here had done a bronchoscopy or scope since he last did in Houston because he believes she needs to be closely monitored even still.   Of course, nothing has been done here.

I shared with him how Dr. Bernstein is contracting some of the best specialists in the world to come to Nevada to see complicated kids like Hannah.  (He has already contracted with one of the top Gaucher docs to come out a few times a year, and we have already met with him twice).   Even though I know Dr. Roy’s schedule is incredibly crazy, I asked him if he would consider coming out and joining Dr. Bernstein’s visiting physicians group so that he could continue Hannah’s care.

Honestly, I expected a “thank you but I just can’t.”   I mean, asking one of the top pediatric ENTs in the country who also run the ENT program for one of Houston’s largest children’s hospital to come out a few times a year to come see Hannah and other complicated patients is just a HUGE request.   But I felt I had to ask because if I don’t at least ask, then there would never be a possibility.

He said, “Yes!”   He said he would love to join Dr. Bernstein’s group and continue to manage Hannah’s care.  He asked me to forward his info to Dr. Bernstein to get the conversation started.

When I read his response, you should have seen my face.  I was thrilled!   All of a sudden I felt this overwhelming sense of relief that Hannah may finally get someone back in her life who truly is looking out for what is best for her, especially in the specialty that is so critical with her form of Gaucher’s disease.   With Dr. Roy back in our lives as a primary for Hannah’s care, I won’t feel like we have to make all the decisions on the trach because I completely trust his guidance.

I’m not getting my hopes up, but I hope it works out.   But whether or not it does (I don’t know how contracting visiting physicians would work as well as licensing and all that stuff), I’m just so touched that Dr. Roy cares so much about Hannah to be willing to come to Vegas from Houston to make sure that she gets the type of care that she so desperately needs.