10847228_10204350475455517_3926514039664352343_o

My previous update I explained the difference between Bronson’s clinical status going from a “tight wire” to a “two by four” and that the optimal status would be “platform”. Two by Four was defined by significant medicinal support (very high amount of diuretics with a daily fluid restriction), and oxygen therapy at night to hopefully prevent the Pulmonary Vascular Resistance in his lungs, created by the high pressures in his heart, from increasing and maybe even decrease. Since that last post Bronson’s diuretic support has been substantially decreased by more than fifty percent. There hasn’t been any necessity to neither track nor limit his fluids. His intake is naturally aligned with his output, which means his heart is functioning better.  Also, his baseline heart rate is now 120-125 which is down from 130-135 and his O2 sats are 95-100, up from 90-94! In my mind he’s achieved PLATFORM STATUS!  Even though we’ll continue the oxygen at night with the expectation that it will keep the resistance in his lungs stable, his quality of life is much more “normal” now, except for the vomiting. He had been puking daily while he was still inpatient but it had stopped when we got home because he resumed a solids diet. In the hospital his diet was 90% formula via his feeding tube which provoked reflux that made him puke. After being home for a few weeks free from vomit he gradually started to again. It slowly increased from just hacking and gagging to full on throw up from once a day to a peak of three to four times per day. He was loosing weight and bottomed out at minus four pounds before Me and Eric finally, after a lot of trouble shooting from food allergy to trying prevacid for reflux, had the realization that he was too dry from the diuretics. I’m still not exactly sure how we determined that but we are beyond relieved that we did. We had some dark and agonizing days at the peak of it all. We ‘re still dealing with some vomiting. It’s declined to about three to four times a week though and he’s gained back the four pounds he lost. It’s still not “norma” but we’re grateful for the improvement. His cardiologist at Stanford is pleasantly shocked that he’s thriving with reduced support, yet still cautious. He is still expecting that transplant will be the inevitable outcome.

We’ve made two round trip road excursions to Palo Alto, CA for appointments at Stanford since being home from Boston. It’s about 13-15 hours on the road, ONE WAY. The overall logistics and cost of driving are actually more appealing than flying. Unless we can get an Angel Flight arranged, we’ll continue to drive. Our first trip was mostly for the purpose of completing the transplant evaluation and meeting Dr. Rosenthal, the cardiologist who is now Bronson’s transplant doctor.  The second trip, we just returned home from this past weekend, we met with a Hematology doctor for some explanation about the Hemolysis (red blood cells breaking), a suspected Heparin allergy (a reaction to the blood thinner used during surgery), and low platelets. She concluded that he’s not hemolyzing anymore and she’s not convinced that he had a true allergy to Heparin when he tested positive for it. She’s still working with the Boston team though to prove that. His platelets have also started to climb based on recurrent blood draws… done weekly, which Bronson is such a brave lil rockstar for. We did see Dr. Rosenthal too. He still feels that despite the clinical improvements, Bronson will need to be officially listed for transplant. We scheduled a heart catheter for Feb 13 at Stanford to check the pressures in his heart and the resistance in his lungs. The pressures in his heart could still come down because they have in other kids after the bi ventricular repair. But since Bronson’s lungs are already resisting the elevated pressures from his stiff left ventricle, we unfortunately don’t have the time to wait for his ventricle to learn to relax. Waiting could permanently damage his lungs to the point where a donor heart would be pumping against them and wouldn’t withstand it. It would fail. So we’re expecting that after the cath he will be put on the list for a new heart.

Even though we trust in our hearts that the final outcome is according to the Lord’s will, it still feels devastating to me (if I think of about it) that the gains he’s been making are simply to keep him in good status for a new heart. Devastation is not my preferred emotional nor mental state so I choose not to put a lot of thought into it. Instead I try to just truly rejoice in the reality that he has more energy and endurance with a whole heart than he did with a half of heart. Overall he’s happier because he’s not consistently tired like he was before the bi v repair.  A constantly tired toddler meant what felt like never ending cranky which lead to an insane me. He even has enough endurance to forgo naps, which still makes me crazy, just the good kind! To add variety to our days, I’ve started him in a “Intro to Pre School” class for forty five minutes once per week for 4 weeks and a tumbling class, both sponsored by the city. Today was his first day and he did great! It’s perfect… for both of us. It’s short enough for me to stay and peak through the glass window and for him to learn to sit still and focus on a task. Per the teacher, “he was to busy to make any projects”, so he has some room to improve before the real deal and I have some time to trust that he can be without me. It’s all part of the attempt to normalize. We’ll keep working on our “normal” while embracing the moments we have together as a family before transplant and we’ll update after his cath in February.

Filed under: Uncategorized

Like this post? Subscribe to my RSS feed and get loads more!