Ups and Downs
I have often referred to the HLHS process as a roller coaster to many of you. Each and every day there seems to be a new joy and a new concern. On purpose, Dan and I do not share these joys and concerns with everyone because we know that so often the concerns turn out to be nothing and we hesitate to celebrate the joy until it actually happens. Over the last weeks we have had a pleural effusion, chylus tube output, excellent developmental results in PT and OT, a CF scare and then a CF relief, a move to the cardiac step down unit, 100 tears and 1000 laughs. We pray valiantly for Paul every moment of every day and it seems that the whole world prays with us. We watch every breath he takes, sometimes forgetting that he is not a typical baby.
On Friday we began making preparations to go home on Monday. The house was cleaned by Paul’s Godparents and Uncle, I was learning to use the at home medical supplies, and Dan was working hard to cart things from the hospital to our home. However, today Paul took a turn for the worse in some regard. As you know, he has been having gastrointestinal issues and what we think is reflux. It seems like he is in some sort of pain after he eats and today he had blood in his stool which increased as the day turned to night. The doctors are concerned and obviously they are not sending us home until we know what is going on.
This could be necrotizing enterocolitis or NEC which is a very scary thing or it could be an allergy to the formula he has been on or it could be a number of other things. So far, his x-rays look goofd and his vitals are good but the blood and pain with eating is confusing. Anytime NEC is suspected in an HLHS kid they treat them as if they do have it as a precaution, So, right now Paul is on fluids and not eating anything and is on three antibiotics. He has had a transfusion and several visits from lots of different doctors to see what is going on with him…they all say the same thing- they don’t know what is wrong, his x-rays look good as does his blood work but the bloody stool is concerning.
From where I sit- it does not matter what is going on really except that my child is suffering and as a result my husband suffers and so do I. We continue to pray that this resolves itself and that we will get to go home soon. We pray that the doctors will figure out what is wrong with Paul’s GI region and fix it and we pray that God will continue to heal Paul as only He can. We appreciate your continued support and we will keep valiantly praying for our warrior and hope you will pray with us.