Highlights: Joseph is stable; we are waiting for a consult from a different hospital; we are waiting for results from testing about blood clots, there are four blood clots; collapsed lung; lymphedema; kidneys may be getting sick; arrival of an authenticated relic of Venerable Jérôme Lejeune
Joseph is stable, but overall there is still a lot of uncertainty and worry from the medical team over his condition. We are waiting for either the Toronto Hospital for Sick Children or the Children’s Hospital of Philadelphia to accept a consult for baby Joseph. Joseph has lymphedema, a condition where lymph fluid is building up in the body between skin and muscle. Doctors believe this is the reason Joseph had an extremely swollen head and abdomen (chyle ascites) last week. Since Joseph has had two lymphangiograms, doctors know that he his lymph node system has differences, likely due to him having T21 (Down Syndrome). Additionally, Joseph continues to show differences in the way his body clots – despite being on anti-clotting medication, they found a new clot on the line that goes directly into the atrium in his heart. The other three clots are still there in his body (neck, arm, and thigh). We are waiting on test results on whether he may have a hereditary predisposition to blood clots.
Last weekend March 1st to Tuesday March 4th, we saw Joseph go from having some swelling to extreme swelling. Doctors were trying to give him diuretics in an effort to help him pass fluid out of his body, but nothing seemed to be working well. On Tuesday we received an authenticated relic of Venerable Jérôme Lejeune. We continue to believe that he is near to us during this challenging time of life. By Wednesday, we started to see that swelling was coming down, Joseph responded to some of the diuretics and Joseph then began to pass enough fluid that he was in net negative numbers for a couple days.
Since Joseph’s chylothorax has been settled for some time (the one remaining right chest tube has had a stable output of less than 5mL in 24 hours) the doctors have give him a challenge to take food orally. He has begun feeding a small amount of specialized formula that is designed not to activate the lymphatic system the way other types of breastmilk or formula would. He has shown an ability to take on feeds without chylothorax flaring up.
Joseph’s lungs continue to keep his bedside nurse and the respiratory therapist busy. Yesterday his chest x-ray showed that his right lung was having trouble getting air, but today it was the left lung that seemed to collapse. It seems that changes in his position shifts the fluid within him, and then impacts the lungs.
The use of diuretics are likely contributing to his kidneys beginning to show signs of getting sicker. Doctors are doing what they can to help manage and give Joseph’s kidneys a chance to regroup.
We pray for wisdom and direction in the next weeks about Joseph’s care. And we continue to pray with hope for healing of Joseph according to God’s will. Venerable Jérôme Lejeune, intercede for us.