So much for our day off! We were scheduled for a lab draw yesterday morning and because it was Sunday & the lab has limited hours we had to stay while we waited for results...platelets came back at about 7,000-for some reason there was question about the accuracy of the count and the nurse wanted to do a platelets transfusion even though Oliver wasn't below his threshold of 5,000. Sean and I talked it over and decided we should wait until our clinic appointment it 7:30 Monday morning to assess his platelets again...the nurse we were scheduled to see on Monday morning deals with all of the HLH cases at Seattle Children's and since Oliver's belly has been getting bigger we didn't want to overload his liver & spleen with more platelets. The Dr.'s on our team were consulted and everyone agreed he could wait until morning so we went back to Ronald McDonald and took a nap.
The last two nights Oliver has been a little fuss bucket at bedtime. Sean and I can usually sooth him, but he was crying out as if he was in pain so we gave him a little pain medicine and that did the trick. During the day today we noticed Oliver was having slightly increased difficulty breathing. His chest was sinking in slightly and his head was bobbing a little. By bedtime we realized that over the course of the day his breathing became more difficult and we decided to page the oncology fellow to ask how they would like us to proceed. She suggested we come in to the hospital, so we did. When we arrived we were promptly greeted by Dr. Evans who did a rotation in the NICU when Oliver was a patient there. We were THRILLED to see him! He was one of our favorite Dr.'s when we were in the NICU and he knew Oliver's history. What luck! The nurses checked his vitals and he looked good except his temp was too low...They did blood work and an abdominal x-ray. His platelets came back at 8,000 and his blood gas was beautiful. The x-ray showed no significant changes to his liver or spleen...he was definitely having some trouble breathing but his blood was well saturated with oxygen and we were thinking we would go home, get some sleep and come back first thing in the morning for our scheduled appointment in the clinic. Oliver had given a urine sample and Sean was going to change his diaper...he noticed Oliver had pooped so he turned around to grab some wipes and when he got back to the diaper it was full of bright red blood with some rather large clots. This would be concerning in anyone, but especially in a baby that can't clot. Where is this blood coming from?? Because it was so bright in color the Doctor was confident that it was not coming from his intestines. At this point we think it may have been from the rectal temp. Oliver had when we first arrived in the ER. Oliver has never had his temperature taken rectally (and probably won't again!). He has had about 5 bloody diapers since midnight. He was immediately admitted and transferred from the ER back to the Cancer Care unit where he received a platelet transfusion followed by a plasma transfusion. During his ER labs they did a blood culture which came back positive. Oliver has a blood infection, so they needed to start antibiotics. With everything that needs to go into Oliver the PICC can't work fast enough so he got another IV. We are taking great care to keep Oliver from bearing down which means we don't want him to cry. He did great during the IV placement and barely squawked (we gave him some sugar water to ease the pain). The IV nurse took some more blood and Oliver will get a red blood cell transfusion after the plasma.
He has been sleeping almost the entire time we've been here. You can tell he doesn't feel good but I think he is relatively comfortable here. We haven't given him anything for pain and he is (mostly) sleeping.
They are going to be rounding on Oliver soon and I don't want to miss it, so I am going to get back in there-but I will keep updating the blog as things progress. Please keep us (and Oliver's Doctors and nurses) in your thoughts and prayers today.
Love to all!!!
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