Love sick for Valentine's Day

Imagine one nurse trying to get blood out of your central line in one arm while another gives you a poke in the other to get blood cultures done. Doesn't sound pleasant to any of us, does it? That's what my boy was up to today. And he was calm and cooperative while everything was happening. 

Specifically he was up to a fever of 38.8 as a result of a self-inflicted scratch on his belly button when he was agitated earlier this week. The fever meant he had to have blood cultures which can't be taken out of his PICC. 

As if that wasn't enough to make his day difficult his post-chemo gifts that kept on giving were heartburn, major nausea and vomiting. Normally in the three days post-chemo we can manage this at home with Ondanzatron (called the Tony Danza medicine by Daddy and Ollie) and Gravol. This time after a much harsher dose of chemo those were not enough and no combination of meds, deep breathing, ice chips, soda crackers, bread, etc. could change things for him today.

Abby was here this morning to chat with the social worker, so ask for of us were together for a few minutes this morning. The sum total of our Valentine's Day together. We rarely do anything romantic and usually enjoy chocolate and little gifts with the kids. So we did it with even less fanfare this year.

While waiting, she had to see Ollie throwing up and at one point leave the room so she didn't get sick herself. This is not easy stuff for anyone to stomach. She was picked up by friends after and went on to have a great fun filled day of sledding for her PD Day and youth group tonight, so her day got better at least.

Also while throwing up today, Ollie's NG feeding tube came up his throat and out his mouth. Scary moment for me and thankfully the incredible nurse Megan (honestly my fave hands down) was calm and quick, telling Ollie she had to rip off the tape on his face quickly and take the tube out. 

So you'll note the photos show Ollie without it. On the one hand he and I were happy it was out, but on the other, Ollie was stressed about having to take more of the meds orally. Fortunately Megan rearranged his pharmacy orders to put anything possible in IV form and anything else in tablet to avoid the gagging from tasting the meds. 

I had a good long chat with my brother, Cory today. I know it's hard because when your family lives so far away (he's in BC) they don't know what to do or say to help you. I told him just keep checking in and talking to me and being as normal as he can be with me. That I'll always take his call if I can and love him for wanting to know what's happening with us, so he's not bugging when he checks in. You don't have a lot of down time to talk or a lot of energy top talk when you do have time. But you still want connection with your family and dearest friends during hard times like this.

This afternoon, Ollie requested a special but short visit from Mackenzie (who is a teenager) who came with her parents Aunt Jenna and Uncle Vic. We know it wasn't an easy visit because he wasn't feeling well and seemed sicker than he normally is, but Mackenzie handled it with grace and compassion and we love her for dropping everything to come and be there for him.

He's now sleeping and I'm hopeful this will continue. 

Hope your Valentine's Day didn't leave you love sick and you enjoyed those that you love, romantic or otherwise.

Better get to bed and get whatever sleep I can. Night John-boy! ;-)

Wish there was an antivirus for all viruses!

It's after midnight as I write this and I should be sleeping, but I am too keyed up to sleep yet. 

This morning when Ollie woke he complained he felt sick and had a headache. I took his temperature and it was borderline fever at 37.8. So I waited a few minutes in between and took it a few more times and it did come down as he woke up a bit more. He decided he might need to have a bowel movement, which sometimes helps. He was a bit constipated (don't tell him I told you this!), but got a bit out and felt better. Temp was down to a normal range, too. He ate well and watched some tablet. 

When I peeked in at 11 am from the kitchen he had fallen asleep. This was unusual and made me worry a bit. Normally if he has a nap it's late afternoon after he's used up his abundant energy. 

So I let him sleep about an hour and a half, checking him regularly and feeling his head for fever. When he woke, his temp was normal, he was hungry and he was bouncing around full of energy as usual. 

Had a lovely visit from friend and fellow School Council member, Siobhan. I also took his temp randomly throughout the afternoon and it was fine. He and Abby had piano lessons when she got home from school and he seemed okay.

He was out of sorts after that and wanting to fight with me over a disappointment he felt I had caused him by not being able to get him something he wanted. I was annoyed and didn't take his criticism very well considering all I am doing to keep him alive daily.

Around dinner I felt his head and it felt warm again, so took his temp and sure enough it was 38.6. Waited a few minutes and took it again...38.4. Time to call the oncologist on call at CHEO. He was familiar with Ollie's case and recommended bringing him in because his neutrphils were low at only 0.5 on Tuesday, so his ability to fight infections was also low. 

Ollie was upset and tried to hide in his room. Abby was sad and trying to calm Ollie. I was stressed and trying to gather things as well as calm Ollie. I told Mario I needed him to come if Ollie was going to be difficult and asked him to call a friend to be with Abby (sadly she and I were supposed to go out for drinks tonight, so this was way less fun for both of us). He was stressed (although he would never admit it) and agitated so naturally could not find her phone number. I got mad and said just let me do everything then! Not our finest hour. 

Why do I share this unflattering story? Because it's real and this is really what having a critically ill child is like at times. We all stress and act in ways we wouldn't normally and sometimes forget to support each other, instead looking to make each other feel worse. Except Abby. She got full marks tonight for trying to make things better. Let the children lead you...

Jenn got called and was on her way to be with Abby. Abby got hugged and promised we would keep her updated. So off to CHEO we went. Fortunately, we've learned to get over disagreements fairly quickly in our family, so we focused on just taking care of him. 

After bypassing the line at CHEO (oncology patients have their privileges), they triaged us into the same isolation room in Emerg as last time - almost a month after last time, too. His fever was 38.7. 

Blood cultures were taken (there was crying), complete check up done and antibiotics were started right away. It was obvious that we were likely being admitted. So we waited. Ollie slept a bit, woke to be prodded some more, was upset and indignant when they shoved a swab up his nostrils to test for flu and respiratory viruses, then ate a banana popsicle.

A little while later another doctor confirmed that we were staying at least 48 hours and admissions came over with the paperwork.

We'd tried to prepare Ollie for this likelihood. We had prayed on the ride over that he wouldn't have to stay, but if he did, we asked for patience and grace to accept it calmly. Fortunately he did. I told him later how proud I was that he didn't freak out. 

We got a "luxury" room on 4 North again, so he was happy about that. Daddy went home to relieve poor Aunt Jenna who stayed with Abby until after midnight. We had a new nurse Ollie hadn't met yet, so he regaled her with details about Beyblades and what they can do. She listened intently while doing his vitals and promised to let him show her how they worked tomorrow. 

I finally got him settled down and now am ready for sleep myself. We're okay, but sad to be in before chemo was supposed to start again on Tuesday. I have no idea if they'll have us stay and maybe start chemo a day or two earlier than planned, send us home for a day or two only to come back or what. I'll share when we know.

Viruses suck.