We got the final-long awaited-test results back from Cincinnati and they were all negative! This means we still have NO scientific reason for Oliver to be sick. His Doctors are still standing by his clinical diagnosis of HLH but whether it's infectious HLH or genetic HLH has not been determined. The chemo Oliver is getting is the same no matter what kind of HLH it is, but genetic HLH is only cured with a bone marrow transplant Sean and I were waiting for these test results to help us decide if we can keep our Sandpoint home. If Oliver needs a transplant we will likely be in Seattle for at least 1 1/2 to 2 years. Even without the positive genetic test result, our HemOnc Doc told us she is confident he is headed towards transplant. This is difficult news to face on so many levels. Obviously, no one wants to see a loved one go through transplant. It's scary and intimidating Also, having our home in Sandpoint made it feel like this was temporary. Like Oliver would be better soon. We love our home, and where we live. It is hard to accept that we won't be bringing Oliver there...and leaving all of our friends and family...Jack and Jillian's school-there are so many things we are going to miss, but it's just not realistic. We can't afford to be here with Oliver and keep our house back home...
Oliver doesn't do well on his steroids. They make him feel hungry and irritable. He gets the steroids on Wednesday, Thursday and Friday which makes him extra cranky by Friday and Saturday night. He is feeling SLIGHTLY better today, but he has not accepted being put down since Thursday! He is on my chest as I write this...
Oliver spiked a low fever a couple days ago. Fevers are taken very seriously around here since they are often the first marker of infection. A blood culture was done and antibiotics were started. After 48 hours nothing had grown in the culture and we stopped antibiotics yesterday morning. The fever has not returned ;)
As if being fussy wasn't a bad enough side effect of the steroids, they also make Oliver's heart rate drop significantly. It always comes back up on it's own, but you should see the looks on the nurses faces when they walk by his room and see the number on the monitor! Often a nurse that doesn't know Oliver will see his monitor and rush in to check on him only to learn that this is 'normal' for Oliver He also had a few episodes of his oxygen saturation dipping, so his respiratory Doc came to see him. He is still on the high flow to help him save his energy for other things (like growing). We discussed weaning him off the high flow, but Sean and I feel that it is keeping Oliver comfortable and the Doctor agreed. He ordered a lung x-ray since we haven't had one in a while-just to see how much room he has to work with and make sure there was no fluid in his lungs. The x-ray looked great and showed his lungs were clear. One thing we didn't expect to see was that his shoulder bone looked a little fuzzy...a cat scan of the shoulder was ordered and it appears that Oliver broke his right shoulder about a month ago. It has healed and he is using the arm appropriately. This was heart breaking to hear. Oliver is so used to pain that he has learned to manage it and never even let on that it was bothering him. There has been no trauma to his arm (or body) and no one can think of a single reason for this to have happened. I think we will be doing a full body x-ray this week to make sure there are no other injuries we need to look at.
Oliver continues to surprise us with his platelet levels and made 9,000 platelets in his sleep! His platelets are at 39,000 today!
Despite all of this, Oliver is stealing hearts. He loves to look at books and balloons, he smiles like crazy and really loves being sung to! Lucky for me he doesn't know the difference between good and bad singing ;)
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