Sleepy Day

Naomi has been having a lot of sinus congestion at night making it almost impossible for either of us to sleep long stretches of time without waking. Her sinus issues were further aggravated by the fact that she could not get a deep breath because she was afraid to move her diaphragm to get a deep breath on account of the abdominal pains. So, nights have been fairly sleepless since we started to take her off the heavy narcotic painkillers on Saturday. Since the narcotics slow digestion down even more, we moved her to a glorified Advil on Saturday and the surgeon discouraged the use of the heavy stuff. That seems to have paid off (disregarding the three sleepiness nights we endured) because we are seeing definite signs of her digestive system moving again and for that we are very thankful. She seems to be resting much better today. She and I both took multiple naps today in between short walks and time in the rocking chair, also prescribed for helping the digestive track move and heal. I felt a little bad for Malakye today because neither Naomi nor myself were much up for playing and he became bored watching us sleep. But for the sleep, I am thankful! 

I am at home tonight and Aaron is on-duty at the hospital. It sounds as though Naomi continues to be restful. She did start to have another fever last night and so we are awaiting results of yet another blood culture to see if another infection is developing. She had a slight neutrophil count today. 2.2! Our hope always is that her bone marrow is responding to the ATG treatments and that her numbers will continue to increase. The fact that she has no mouth sores or bruising is really good. Clinically, she looks really good. Unfortunately, her abdominal swelling has not decreased yet and that is a huge prayer right now, as that swelling must decrease for her to be able to return to eating and drinking. We are seeing that her RBC and hemoglobin count is really struggling since she has been taken off food. I had been keeping those numbers up at home with green juicing and heavy broths. She had been transfusion free for over two weeks but the time is quickly approaching when she will require another red blood cell transfusion. Right now, we are pushing it because we want to minimize them due to the risk of iron overload and also the risk that her body could build up resistance to some of the proteins in other bloods making her transplant more difficult down the road. 

We we continue to plan for the bone marrow transplant, and have chosen our destination and communicated that to both the insurance company and her primary oncologist/ hematologist. We continue to hope that she has full recovery from the ATG, Neupogen and cyclosporine, but have to move forward with transplant planning since it is such a time-sensitive issue. It is so hard to tell right now whether or not the transplant will be required because her residual blood in the veins may not be showing improvement because the cells are in the tissues and organs doing their job. Furthermore, when the counts are as low as hers, there is a chance that the very small blood sample does not contain some of the very few WBCs she has circulating in her body. Only time will tell, as this intestinal issue heals. We are certainly not jumping the gun to do the transplant and could pull back at any time if it seems like recovery is happening. Most cases of ATG recovery are within 3 months. There are a few cases of it happening within 6 months. Very few cases take up to a year or more. Unfortunately, due to Naomi’s severely low WBC count, we are not at leisure to wait very long. Multiple transfusions per week of platelets and now weekly RBC transfusions can pose long-term risks. 

Please keep me in your prayers as I take Micayah, Malakye, Lauryn, Niamh and Caitriona for their HLA typing blood tests tomorrow (Wednesday). We are thankful for all your prayers and the kindness that has been heaped upon us during this journey. Your gifts continue to arrive and carry us through. We appreciate each and every thought, prayer and kind gesture. 

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