Sorry its been a while since I posted last. The past week or so, Mac hasn’t been going to sleep until 2 or 3am! Then he wakes up every couple of hours or so. We’ve been sooo tired. One morning, the day-shift nurse came at 7am and we had only slept 3 hours! I don’t think Mac feels very good. He hasn’t had any fevers but he’s been fussy and unable to sleep. Last night I finally just gave him tylenol, gas drops, and zofran (his anti-nausea med) all before bed and he did sleep better. They sent the GI doctors to talk to us about the blood in Mac’s stools. They sent a sample and tested it for every bacterial and viral infection they could. So far they have all been negative. The bottom line is that no one knows. We’ve been on isolation and when the nurses walk out the door Mac reaches, cries and wants to go out there 🙁
We’ve been reading a lot of books and playing with toys. One day a nurse brought us a “water bullet”. Its a little 5ml thing of sterile water. We call it “magic water” and use it to help him wash down his meds. He loves them 🙂 Yesterday Mac’s nurse Rebecca worked and today was her birthday, so we hit the call button and when she came in we sang and had a little birthday party for her. It was fun. Mac didn’t want anything to do with the birthday hats! As a mom, I have so much appreciation for nurses that treat Mac with sooo much love. They are so special to us.
His ANC was 0 today and we are just waiting for count recovery. They said that recovery takes longer each time but it seems like he tends to recovery quickly. I am thinking that we will make it home sometime towards the end of next week? He’s been needing blood and platelets every few days or so. He hasn’t been hooked up to fluids because he’s been nursing so well! When the GI docs met with us they asked if switching to a bottle with a formula would be an option and there’s just no way. Nursing calms him down, puts him to sleep, and is clearly sustaining him physically.
I am so excited for Monday! Mac gets to participate in “Flashes of Hope”. Professional photographers (that I’ve heard are amazing) come and take close-up, black and white pictures of the cancer patients for no charge! I am hoping we get to see them soon after they are taken. I will for sure post them!
I will try to post more often 🙂 Thanks for the love, support and prayers!