Thursday, May 5, 2011

The Gravitron

One of the hard things about raising a kiddo with a complex multi-systemic medical condition is that the appts and tests and procedures seem to be almost constant at times. We have had times where we will go 3 weeks or so without an appt, but we are still dealing with insurance claims, our home health company, and prescription refills on a regular basis. And we also go through periods that seemingly last for months at a time where we have continuous appts or procedures. I have found that after a while, those weeks wear on our anxiety levels due in part to the heavy load we carry in trying to keep everything moving smoothly.I was asked yesterday "Who manages Nathan's lab work?" which I replied "Well, I do." Numerous of our doctors order labs for various reasons at different times, and it has really been up to me to get the results and consult the appropriate doctor with whatever labs may be troublesome. Honestly, that doesn't bother me. But I have realized that my roll as Nate's mother is also to be the messenger for everyone else. I am the supplier of information...not only info regarding Nathan's symptoms and our concerns but also info given to us from his numerous other doctors and test results along the way.

This is where my anxiety gets the best of me from time to playing back the conversations in my mind. I am constantly wondering if I was able to portray everything completely accurately. In relaying another doctor's information, was it completely correct? Did I understand what had been explained to me and did I relay it to his other doctors accurately? The clinic notes that doctors write to one another are always helpful in the big picture...but that is another tough thing when you essentially have 2 sets of specialists in 2 different states. The parent is once again expected to be the primary source of information. So when we go to numerous specialists in a short amount of time, I always get a bit anxious as I try to keep all of the info in my brain and try so hard to perfectly spew it back out to each doctor.

Its just all part of it, but it does get quite stressful at times.
Anyway, we had a really great appointment with our new pulmonologist yesterday. We loved our old pulmo, but he moved away last summer. We had met our new pulmo in the hospital at one point, but this was our full visit with her, and by "full visit", I mean that we talked for over an hour. Thankfully, I believe we were the last appt of the day for her, since the entire office and most of the staff had already left before we did. Our old pulmo had given her a very thorough and extensive portrayal of Nate's condition and history before he left, and I was literally amazed at how well she knew him before taking him on as a patient. And as much as I loved our last pulmonologist, I dare say that I love this one as much or even more. She is such a delight and so smart, and she is also the mother of 3 young kiddos who are exactly apart in age as my three.

I also love the fact that she should be here for a very long time (she has one year left of her fellowship but should be hired by the dept afterward) and wants to create a continuity of care clinic, which is something that our peds pulmo team doesn't currently do...which is why Nate has always seen the fellow, in that they want him to have continuity of care with one doctor in the specialty. So, I am so excited about this great new doctor...her zeal, her desire, and her caring nature are all so refreshing.

With this appt, we added yet another test to the upcoming mix...another sleep study to see how he is doing now since it has been over a year since his last one. She also changed up some dosages of his meds, and we have a good plan to try now when he is having increased breathing difficulty...though I still think a lot of his increased breathing issues are metabolic and muscle weakness in nature and not necessarily lung-related, we at least have something to try to see if it works.
In other upcoming schtuff, Nate has an ABR (auditory brainstem response) test scheduled in a couple of weeks to check his auditory function and hearing sensitivity. And he has our annual visit with our home immunologist coming up as well. Add in the upcoming endoscopy and tube placement that still needs to be scheduled...and well, this is when I look at everything on the calendar and just want to go rest on a beach with the sole sound of waves crashing gently against the shore in an attempt to drown out all things medical in my brain.

I was delighted to get an email this morning from Nathan's mito doc stating that she had discussed a needle biopsy for Nate with another specialist, and he assured her that it is more traumatic and less successful than an open biopsy. So her plans to do a liver or punch biopsy on Nathan at our return visit in October were put on hold. I am quite relieved at this change of plans. The additional info we were concerned about would be nice, but it is always a hard decision to put him through procedures, especially if they may not change how we treat him anyway. So, we won't know for sure if he has a mtDNA depletion or not...maybe not knowing is the best thing for now.

Many others have equated the roll of having a child with this disease as a roller coaster ride with constant ups and downs. I honestly think it is more of a Gravitron. You go through times where you are spinning at high rates, merely being plastered to the wall while you are fully absorbed in the spin. When things settle down and the spinning starts to slow, you can once again put your feet on the ground and walk around with sturdiness and confidence...until the next time the stress of the spinning starts back up.
I am looking forward to when this spinning cycle stops for a while.


Heather on May 5, 2011 at 3:18 PM said...

Wow, you just put into words my exact thoughts of late. It is so tiring and stressful, yet we just push on. It seems that even when I look at the calendar and there is nothing for 3 or 4 weeks...something manages to come up anyway!

Your kids are so beautiful.

Heather (& Lindsey)

Colton's Journey on May 5, 2011 at 10:16 PM said...

WOW! you just nailed the thoughts running through my head! We are the case managers too and sounds like you have a better reaction to it than we get from dr.'s here. We try to plan appointmnets but it seems like they are constantly being canceled and rescheduled and then all organization of appts. is lost!!!

Kyla on May 8, 2011 at 11:52 AM said...

I am really amazed by people who deal with TWO medical is hard enough to keep up with one!

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