IMG_20141011_134720_565This Thursday marks 3 months that we have been in boston on this excursion. These past few three weeks have been a mini coaster with high and low points of recovery. The peak of good news was checking Bronson’s BNP (a measure of the stress on his heart) where 30 is normal, 300 is concerning, his first measurement was 3000. Follow up tests, after starting a drug to help his heart called millrinone, have showed 1095 and most recently 826. Still very elevated but trending in the right direction. His “fat track” is also note worthy… he’s gaining!! When he had the G tube placed he weighed 11.2 kilos (about 24 1/2 pounds) and is now ringing the bell at 12.8 (just over 28 pounds). He’s about half way back to the weight that we brought him in at

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. Just after we started with the G tube we were also transfered to a different team of doctors. We are now under the care of the advanced cardiac therapy team, also known as the heart failure team. Dr Blume has been really good at pushing Bronson’s care in directions that is has seemed to be needing. Aside from the continuous millrinone and the almost continuous feeding (he gets formula in his tube 16 hours a day right now) she has finally gotten him off IV diuretics. That makes almost all the meds that he is taking now by mouth And IV Diueretic INDEPENDENT!  The hardest part for all of us is the fluid restriction. His daily limit was set at 800 ml’s and most of that gets used up by the formula in the tube. For drinks that he can take, they’re still “honey thick” and he only is allowed 5 ounces which we split up to half ounce drinks. Dr Blume told us about one of the body’s mechanisims that goes ‘when the heart is working hard the brain tells the body to drink more water to thin the blood and make it easier for the heart to pump’ which is the exact wrong thing in Bronson’s situation. More liquid to drink could lead back to fluid overload again. It’s a tough battle to wage but it has been to his benefit. As a result of that, he’s up and moving alot more these days. We wander the halls of the unit as best we can with him (mostly just to the nurses station and the small kitchenette to clamor for more water). Physical therapy has been coming by every weekday to work with him and they have been impressed with his strength gains. All the mundane things that happen here day to day don’t seem worth reporting until they finally stack up enough to warrant a bigger update and then some of the things that seemed like a big deal on those few days don’t seem as important when it comes to the actual reporting. One of the mundane that should make the cut is constipation. With all the formula in the tube poor little man was “FOS” (We’ll leave that interpretation up to personal preference ;-)…. the medical translation is “full of stool” ) We asked for a copy of that x ray to keep as proof to show him when he’s 16! The team attempted to “move” him with Miralax along with another prescription called sena. Unfortunately though, combined they just weren’t doing the trick. One of our favorite nurses, Lea-ann, suggested the “chocolate bomb” which is a combination of milk of magnesia, sena, and mineral oil that tastes so unplesant that they usually hide it in chocolate ice cream. Since he has the feeding tube she just ran it in without the ice cream and three hours later we got the desired result and now have a regimen of miralax so that we don’t get “behind” again. It’s been all forward movement since then. Forward progression with weight, heart function, fluid reduction, O2 wean, strength, and overall mood.  We both feel blessed that we continue to find joy in the little things. Despite an obviously stressfull situation, we have yet to experience a continual state of stress. The Lord has enabled us to endure the trying times yet still embrace the daily triumphs.


: Click on each picture to enlarge and see the whole image.

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