What a week and it is only Wednesday! We may not be doing anything physically exhausting other than playing parents and career builders but monitoring Grayson's every move and behavior is what pushing it to the max.
Most of his counts were good on Monday expcept ANC-a low 250. That means he does not have much helping him fight off infections and viruses. He was scheduled for a PEG injection (his left leg, I alternate the leg each time) and count check. His cough got pretty nasty on Sunday and he woke with a runny nose on Saturday. Even though his cough sounded asthma related we wanted to be sure his lungs and airways were clear. They were. Dr Kwon listened to his symptoms and mentioned he is most likely fighting off a virus of his own. We were to monitor his fevers very closely the next week.
He hovered at an official fever (100.3) for two hours on Saturday right before dinner. Then probably had one in the middle of the night Sunday but I did not want to wake him to take it. It obviously wasn't horrendous enough to upset his sleep like the one Halloween eve. He had no fever while we were at clinic nor the rest of the night. Princess Jennie said to keep an eye out bc if it continued he would have to come in for IV antibiotics (and don't forget the 48 hours fever free rule before we could go home).
It really is a double-edged sword. Of course we don't want him to have a virus or stay in the hospital (not to mention the stress a two day or more stay would place on us in our currently increased chaotic state) but you do want him to be okay. If his body can't fight any sort of infection right now then antibiotics and anything the hospital can do to "fix" it seems to be the way to go. But do we also give his body a chance to fight what little it can? And I think that is what is actually going on. His body seems to be trying to do what it can.
Tuesday was mind-worrying draining. AC and Uncle Tim were here with the little ones (thank goodness!) and for sure the only thing on Charito's and my mind was when G's fever would appear. My many phone calls indicated he was barely eating for them, but at least drinking his usual rounds of milk and a glass of water. He was playful and goofy, having a great time with them. He even took breaks to rest here and there. Then I was texted he had a fever of 100.3 (ear thermometer). I had an hour before I was home and his mood was decent so I waited it out. When I got home and thanked them for putting up with my rugrats I took it again using the auxillary thermometer-- 100.1. It sat there for another hour and then dropped to 99. And in case you were wondering-we did not give him Tylenol. He is not allowed to have medications or herbals of any sort without dr permission. His mood never worstened. I was able to get him to eat broccoli and hot dog and even 2 more glasses of water. He was not miserable. Just tired. Early bed worked out well, when I was finally able to get him to stop clowning around and jumping on the bed. He truly has mastered the art of stalling! That clown act will suck anybody in. And how do I not allow it? Here we are fear of fever changing our plans at any hour and he is goofing off! That smile and laugh are priceless and have to mean not all things are bad, right?
But seriously this fever thing is such a GAME! It plays with your mind. Leaves you on edge. It is not like Halloween eve when it was without a doubt a high fever and with no signs of going away. He was clearly miserable and had us really worried. It was like all he wanted to do was curl into a ball and wait for someone to make it all go away. He clung to me and would not let go. That night there was no doubt in our minds that the hospital is where we needed to be. But this fever here and there business is frustrating. If it appears at all it lasts no longer than 2 hours and sits at the cusp. And yet his mood is good, eating and drinking well. He is all over the house chasing and playing. So is this what an attempt at his body doing some germ-fighting looks like? Princess Jennie said Saturday and Sundays occurrences are possible with "these kids". Leukemia will do whatever the hell it feels like. But if he takes a slide down we obviously need to call and get in. So, I guess we are doing all the right things thus far. It is just so nerve-wracking when his ANC is so low. AC and Uncle Tim were ready-made nurses taking his temp every 20 min. And I do all these little things to ensure it is not a "fake" temp-like not putting socks on him, making him wear short sleeves, no blankets when napping, not taking his temp after cuddling. Anything that may mislead a temp! Crazy I know!
Today, Wednesday, so far he is well. No fever either! A bit of a runny nose. He woke in a good mood. I got my usual hug n kiss and "morning Mommy!" But then he was not in control of the remote upon entering the living room and tears and crabapples ensued. Charito was home during the day and said it took him a while to bounce back from those crabbies but he did eat some. He also napped. When I got home, to he and daddy hiding under the blankets to surprise me on the couch, (and Charito left for work) I was able to get him to eat broccoli, pork chop, popcorn and noodles. He is on his 4th glass of milk and playing with Triston right now. Cough is still there but I have been on that like white on rice. He has been getting up to 4 saline nebulizer treatments a day plus an increase in his ProAir inhaler to manage this asthma kick up. I refuse to let this turn into RSV or pneumonia if I can help it. But when ANC is 250 I don't have much on my side to help me out. We are constantly washing our hands (see my bloody knuckles as proof), changing our clothes as soon as we get home from work or school, constant laundry and cleaning of mulitple surfaces, Lysoling (it is a word!), showering kids as often as possible, and wearing masks when necessary...
ALL FOR THIS SUSHI FACE!
Awe, I just overheard him ask T for a hug!
And then he yelled at Caden for dropping his bottle-G, the little dictator (that does no wrong himself!).
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