3 months…it’s a milestone that makes me lose my breath a little. In the grand scheme, we were told 6-12 months. I see parents in online groups who are approaching the year mark inpatient. I appreciate I get every moment I get to spend with Graham here. He is awake, he is alert, he is happy, he is ornery, he is a joker, he is full toddler. I love that. Not every parent gets to “enjoy” these moments during their wait. I am so grateful. But some days, it sucks. <\/p>\n
For the most part, Graham has continued to have good days. Usually, doctors don’t have to talk to us much and we just “live” in our room. Unfortunately, there have been a couple of concerns with infection. His Berlin site had some discoloration that alerted a few of us. In addition, this past Wednesday night\/Thursday when his electrical heart rate shot up and he had a fever. We were told that fevers\/infections are the greatest risks during this 3-6 month time frame. They are very aggressive with fevers – fevers can impact his BiVADs and the effectiveness of his medicines, which in turn can increase the risk of stroke (which is already high by my standards with some of his medicines). He’s on broad-spectrum antibiotics. His fever and inflammation markers decreased fairly quickly. He got the infection test buffet – nose swab, BiVAD site swab, blood culture, and urine culture. All of those results were fairly unremarkable. I’m breathing a little easier, but we are fighting a decreased appetite. <\/p>\n
Side note – I usually ask him to say the name of his medicines. He says Bivalirudin all the time, but when I said, “Graham, can you say antibiotic?” he replied, “No, that’s not a real word,” and continued playing with his cars.<\/em><\/p>\n While Graham loves Mickey, his new reputation is with Cars. We have Hotwheels tracks that go outside of the room. We ended up getting him a Hotwheels table – one because it’s cool, two because it contains all the cars so they aren’t always on the floor. Graham’s main doctor always talks about a Hotwheels Prius. If anyone has one and is willing to part with it, I’d love to buy it as a gift.<\/p>\n And my last note, a PSA you are all probably over – The number of kids that are here because of a small virus that triggered their more serious disease is increasing. Human COVID fatigue is real, but viruses\/bacteria don’t care. Symptoms are our bodies’ way of saying something isn’t right. Listen to it – we all need rest, especially if your body is screaming at you. Avoid others if you are symptomatic, wash your hands frequently, and wear a mask if you have to go out. COVID or not – spread love, not viruses.<\/p>\n Thank you for your continued prayers, positive vibes, and support. Zach and I are hoping to get to the Puzzle Race if all goes well here. We hope to see you there!<\/p>\n","protected":false},"excerpt":{"rendered":" 3 months…it’s a milestone that makes me lose my breath a little. In the grand scheme, we were told 6-12 months. I see parents in online groups who are approaching the year mark inpatient. I appreciate I get every moment I get to spend with Graham here. He is awake, he is alert, he is happy, […]<\/p>\n","protected":false},"author":0,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-13","post","type-post","status-publish","format-standard","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/cota.org\/cotaforgraham\/wp-json\/wp\/v2\/posts\/13","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotaforgraham\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cota.org\/cotaforgraham\/wp-json\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforgraham\/wp-json\/wp\/v2\/comments?post=13"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotaforgraham\/wp-json\/wp\/v2\/posts\/13\/revisions"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotaforgraham\/wp-json\/wp\/v2\/media?parent=13"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}