Remarkable!

Dear Friends,

It has been hard to put thoughts into words the past couple of weeks.  Daisy’s death was/is a tough loss in our community and an emotional hurdle for us.  Although the circumstances of the journeys were very different, the deaths of Katie almost 4 1/2 years ago, Logan 3 1/2 years ago, Nina 2 years ago and now Daisy remind us of the battle we are in (no matter how normal we try to conduct life with a medically fragile child)…it hits close and it hurts.

Once again….my response is to “circle the wagons” and protect.  This, however, has been difficult to do with our out-of-control schedule that literally has us up at dawn and going, going, going until we flop in bed at night.  The life of our family has us going in many different directions these days and it has been difficult for this mama’s heart to be motivated.  Adding insult to injury, I’ve had three interactions in the past week with agencies involved on some level with Rudy’s care that have made my blood boil.  Interactions involving incompetencies, inadequacies and inefficiencies that just shouldn’t BE!!!!  As much as I’d like to be the “Norma Rae” of my world, I’m tired and I just want to take care of my family without added hassle upon hassle with a few hoops thrown in!   It seriously makes me want to pull Rudy in close, close the door and do it all myself.  ARRRRRRGH….Sad, Frightened, ROYALLY Annoyed!!!

So all of this is churning around in my heart and head when a simple, off-handed comment in an elevator brings it all back into perspective…Rudy and I were at UCLA on Monday for a couple of of routine appointments and we rode the elevator with a doctor who knew us from our original 7 month stay but is not a “key” member of Rudy’s team.  She complimented Rudy on how great he looked and how big he is getting and then she looked at me and said “Wow, you haven’t been back for a long time.  That’s remarkable!”.  That’s it…that’s all she said but it served to remind me that our situation IS remarkable!  Yes, it’s tiring and frightening at times…it can make us feel frustrated and annoyed when dealing with the “system”…but the fact that we haven’t been back to the hospital for an unscheduled stay since May of 2009 is REMARKABLE…the fact that Rudy hasn’t had any major setbacks is REMARKABLE…his slow but steady developmental progress is REMARKABLE.  We don’t lose sight of the fact that each day is a gift (even the poopy, annoying ones)…each day is remarkable.

With that said, many are wondering where we stand now with Rudy’s treatment.  Today is the last of a string of specialist appointments we’ve had the past two weeks.  Rudy met his new SB Endocrinologist on Valentine’s Day, Dr. Candido-Vitto, after Dr. Lifshitz’s retirement in December.  We like her very much.  She is in agreement with the path of treatment Dr. Lifshitz took with Rudy and will continue to do the same.  Since treatment for his thyroid issues would be the same whether we know the cause or not, she, like Dr. Lifshitz, is not recommending we pursue further testing to determine the cause.  She will simply monitor his monthly blood work and adjust medication doses as needed. Currently there are no changes (good or bad) in his thyroid function.  We saw Dr. Woo (UCLA pulmonology) and Dr. Shapiro (UCLA Ear, Nose & Throat) on Monday and both were real quick check-ins.  Again, no changes good or bad.  Rudy’s stoma from his tracheostomy has not completely closed yet and I was hoping Dr. Shapiro would be willing to stitch it closed but she remains determined to let it heal on it’s own…it could take another several months.  Since I’m eager for it to close for PT reasons and to get him in a pool for swim lessons, she suggested we try a Tegaderm-type dressing so maybe swimming will be possible this summer after all…we’ll see.

Of course, we’re always eager to hear what Dr. Harake has to say…we saw him for our routine appointment last week (we see him every TWO months now!!!!).  Again there aren’t any major changes in Rudy’s heart function…still mild-moderate valve leakage, no increase in enlargement which is all good news.  Although we aren’t there yet, Dr. Harake does think it’s time to start talking with the transplant folks down at UCLA and gather information about a possible heart transplant.  Our understanding is that Rudy would not be considered for a heart transplant currently because of his pulmonary hypertension issues but I suppose it would be wise to gather the information and start wrapping our brain around the idea now before we find ourselves needing to make decisions in crisis.  It would be a difficult and terrifying leg of this journey and one we would not consider lightly.  So, I hope we can start a conversation with Dr. Alejos and other members of Rudy’s team soon.  Dr. Kelts (Gastroenterology) is ordering an ultrasound here in SB in the next couple of weeks.to get a baseline on Rudy’s liver and spleen.  He suspects they are enlarged due to some back pressure from the heart (I think that’s what he said) given his distended belly and bulging belly veins.  Baseline information like this would also be helpful down the line to accurately assess the condition of these vital organs in the event a heart transplant is considered.

In between all the extra dr. consults this month, alotta life has been lived too!  Did I mention G’ma Jo is here?  She’s already in the middle of her 3 week stay with us…she was able to fly “outta Dodge” early and beat the wicked snow storm that hit the Kansas City area early last week and she jumped right into our schedule of  dr. appointments, SBRM graduation dinners, play practices, hockey games, soccer tourneys, drum comps, jazz festivals, school fundraiser, therapy, GS cookie booths, garage sale AND birthday parties!  Phew!  Take a look…

Love to you all!  Have a remarkable day!!