Our sweet Oliver has quite a temper! I think the steroids are to blame...we held him for more than 9 hours yesterday and as the nurse said he fussed for almost an hour and a half after we put him down. She gave him a little benedryl to see if that would help (one of his medications is known for making your skin itch) but that didn't help. She fed him, but that didn't help. She eventually gave him morphine and he calmed down and slept.
The physical therapist came yesterday and measured Oliver to make him a more elaborate bed...she used a wedge of foam and carved out a hole for his belly so that Oliver can lay on his tummy without putting pressure on it. The goal was to let gravity pull his organs down and create more space for his lungs so that he doesn't have to work so hard to breath. He didn't seem thrilled about it...so they made another one that would support him on his back (or side) with straps to help keep him swaddled. He seems to enjoy this bed a little more.
Medically things are changing for Oliver. He has been on the steroid dexamethasone (dex for short) for almost 5 days now. Yesterday we saw a significant jump in his platelets-he went up to 34,000-but at 5:00pm yesterday he was back down to 13,000 and at 4:00am he was at 6,000. His Doctors and hematologists have decided to lower the threshold for giving platelets to 5,000 so he hasn't had any blood products for 24 hours now. The thought behind this lower threshold is that his liver could be bogged down trying to get rid of all the platelets we're pouring into him. He will have his platelets checked again at 4:00 this afternoon. They will almost certainly be below 5,000 and he will get another platelet transfusion. The transfusions will only contain half the number of platelets he was being transfused with before.
Oliver still has not been diagnosed with anything. There are very few, specialized tests that are still being done but it is common for infants not to present with textbook symptoms of a disease or disorder. The closest we are to a diagnosis is a disorder called HLH (Hemophagocytic lymphohistiocytosis). There are 8 characteristics of HLH and in order to be diagnosed with it you must present with at least 5 of the symptoms. Oliver has 4. My basic understanding of this disorder is that the immune system goes haywire-the best treatment they have is a form of chemotherapy. Just to be clear, Oliver does not have cancer. In this case the oncologist would use chemotherapy to lower his immune system and sort of 'reset' it...Oliver's Doctors do not feel comfortable diagnosing him with HLH, but are keeping a close eye on him and continuing to study his blood work closely. He was moved to his own private room (aka-isolation) in case they decide to begin chemo. The dose of dex that he receives is consistent with the dose given to children on chemo and only his hematology-oncology team administers it. We continue to pray that Oliver's Doctors are able to treat him and that we will be home soon with a healthy, happy Oliver.
We miss the heck out of Jack and Jillian and are so thankful for Jenni who has taken them under her wing. Hearing the joy in their voices when they tell me about the adventures they have been on with their friends and the excitement about their days at school lets me know that this is much harder on me then it is on them! Thank you Stacy for sending pictures and videos of them...It truly does take a village to raise a child and I really couldn't ask for a better village! Much love and thanks to all of you!
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