The good news, make that great news is that John is still on the floor and not in the PICU. Also that the yeast has not taken up residence in his eyes.
The not so good news is that last night while giving him blood products to get him ready to have his central line removed this morning he developed a pleural effusion - fluid in his lungs. A little oxygen and lasix and by afternoon he was fine but it delayed having his line removed until tomorrow.
Also on the not so good news part is that an ultrasound of his kidneys showed that has a kidney infection, but the good part is that it is bacterial and they were already treating him with antibiotics appropriate for the infection. Unfortunately his kidney function has dropped some and the kidneys themselves are worse off than the last time they were seen via ultrasound.
Also on the not so good news part is that during the echocardiogram they found a spot in his left ventricle that could be a clot or could be a yeast ball. They won't know for sure for a little bit and some more consulting with cardiology and the infectious disease doctors. This is not compromising his heart function at the moment but if it is yeast it will mean that they will have to treat longer with the antifungal drugs that are so damaging to his already fragile kidneys.
On a good note however his fever is not nearly so high as the last time we went through this. His GI docs are ready to start really pushing feeds as soon as his line is out and expecting that if he can't tolerate them at the rate they hope will work a 5ml per hour increase per day, that they will be able to back down to something a little less aggressive and keep increasing them. John is currently at 55% of his caloric needs being met through g-tube feeds and he needs to be at 80-90% for them to not place another broviac or remove a temporaryily placed one.
Today has been exhausting and although we are holding up okay we are looking forward to a little sleep and a quiet night where they aren't trying to fill him with blood and taking his vitals every 15 or 30 minutes throughout the night. The nursing staff is of course great and has taken great care of John and of us - they make things much easier than they would otherwise be.
Thanks so much for the encouraging notes and prayers. We continue to pray and rely on God's good and gracious will to carry us through this current struggle. In Christ's Love, Mark, Gina and John - who even though so tired he could barely hold his eyes opened managed one small smile before he fell asleep this evening
The Food Adventure Continues
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I started this blog when we started changing the way we eat. Finding out we
needed to be gluten free, actually for me wheat free, was a huge big deal.
Late...
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