Tough Kids (disclaimer: this post was stolen from a FB friend)

I've been thinking how a lot lately how tough kids with DS are. Not only do they struggle with things that come so easily to other kids but many of them have serious health issues. Like my little M. who has had three major bowel surgeries, open heart surgery and spinal fusion, not to mention the countless number of outpatient ear and eye surgeries (of which we have another this Friday and I've literally lost count to what number this is but am pretty certain we get a set of steak knives.). And we are not the only ones.  So many of our friends have had heart issues, bowel issues, sinus, ear, eye, reflux, oral aversions, leukemia, you name it.  I've been thinking particularly of our friend Bobby who is three today and in the hospital for the umpteenth time with heart issues. He's already had two open heart surgeries and faces another not to mention, a G-tube, and other issues. So next time you see someone with Down Syndrome, remember they not only have developmental and physiological delays that make it difficult for them to do certain things, but many of them have had numerous hospitalizations and/or medical issues. And ask yourself if you could endure all that they have; I know I couldn't. So Happy 3rd Birthday Bobby. You are an amazingly tough little boy who is full of joy and love and has two amazing mamas.  We love you. 

Update

      We've had a good day today. We had our favorite nurse!

      Bobby continues to have low oxygen but the cardiologist is not overly concerned. We're having a cardiac catheterization and electrophysiology test tomorrow. Essentially, they are going to measure his pulmonary pressures, look for collateral arteries and veins, potentially do a balloon procedure if his pulmonary arteries are too narrow, and test for abnormal rhythms in his heart.

      The lung pressure is important because he needs low pressure in order to have a successful next surgery. If his pressures are high, he will go on Viagara for a few weeks. One of the side effects of that particular drug is that it lowers pulmonary pressure.

      Collateral arteries and veins are 'extra' vessels that grow in the body. Normally they don't hurt anything, but since Bobby's surgery is about restricting his blood flow, collateral veins can cause problems. Simply, after his surgery, the blood coming from Bobby's body will bypass his heart and go directly to his pulmonary system. We want to make sure there is no collateral vein that is redirecting his blood to his heart and thwarting the goal of the surgery. So, the cardiologist will block off any collateral veins tomorrow.

       Bobby has narrow pulmonary arteries.   The cardiologist will make a decision about expanding them with a balloon procedure.   This will help make sure he gets a good flow of oxygen rich blood.
       Lastly, they will be checking his heart rhythm. We already know that his heart rate is low when he's resting. Now they will test to see if his heart sometimes misses a beat. This is the final test to see if he needs a pacemaker when they do the next surgery. This is also one of the scarier tests because if they induce an abnormal rhythm they may have to shock him out of it.
      The tests will be sometime after noon tomorrow.

Bobby Grunsted: Cardiac Patient Extraordinaire

Saturday with the Bubs

Bobby had an afternoon of low oxygen sats (60s again), low heart rates (53), and lots of hospital alarms. The docs are waiting and watching for now. The cardiac cath on Monday should provide more of a roadmap in terms of next steps. On a brighter note, Bubs had several playful moments of standing up in bed, banging on the roof of his crib (a.k.a. baby jail), and scooting around enthusiastically. He also had 4 lady callers today - visits from friends Lori, Karen and Shannon, and his speech therapist Kathleen. Thanks, everyone, for the DVDs, books, toy guitar, magazines, puffy ball, and assorted goodies for the boy, not to mention chocolate based yummies for the Mamas. We are lucky to have a wonderful network of friends!

Lockup: Baby Jail...

Not loving the telemetry monitors...

Bobby Update

Bobby was admitted to the hospital today after turning blue during a cardiologist visit. So far, all tests have come back with a good result. The only concern is that his sleeping heart rate is low - meaning he may get a pacemaker during his next heart surgery. We'll know more tomorrow. In the meantime, we're here until at least Tuesday when they will do a cardiac catheterization to check his pulmonary pressures. He needs low pressure before they do the next surgery.

Today's Cardiology Visit with Dr Tsao

My sweet boy, before the fateful cardiologist appt today where he turned blue and desatted into the mid 60s...