this is the face ...

... of a very unhappy boy!

Jax started coughing a really harsh dry cough on Monday morning. We already had an appointment at our clinic in Victoria for later that afternoon so I wasn't too concerned. He just had a dry cough and no other questionable symptoms. He handled his ventolin and inhaled antibiotic really well and we made our way to Jeneece Place for the night. He had a good night and we went to his chemo appointment as planned on Tuesday morning. It was a long day with an LP and IV chemo. Nurses and Doc listened carefully to his chest and it was all clear, so they advised me to just watch him carefully as the week went on, especially after his Dex wore off early next week. (Dex elevates his white blood count, so once the elevation wears off, viral illnesses can become more intense.) The cough lingered and then on Thursday he started having a stuffy nose. Since he's always more sensitive and moody while on Dex, adding in the illness has made him a very grumpy bear.

Friday night he hardly slept at all. Coughing non-stop. Ever since he was just little, he tends to cough so hard that he vomits. That's been in full force this week too. Yuck. He was so miserable last night, and we couldn't give him anything to help him feel better, since Tylenol is a no-go for someone with a VAD. We can't give it because it can mask a fever which could lead to missing out on catching a bacterial infection. A bacterial infection can be very dangerous for someone who is immune-suppressed. 

Because his VAD line goes directly into his heart, 

we have to take fevers very seriously. Every time. 

He begged for the morning to come so he could get out of bed and lay on the couch. He finally napped late this morning but when he woke up I could tell his temperature was significantly elevated. I had checked a few times through the morning and he was always within normal range and this time when I checked it was 39.4. I've never seen his temp go that high so I jumped into flight mode. I grabbed a few things, put Emla (numbing cream) on his port and got him packed up to go. Paul had taken the car into Lake Cowichan so I called him to get home right away. He swooped in and helped me get everything ready to go and called the hospital to let ER know we were on our way. 

Once we got there he was seen by triage right away and his temp was a bit lower but hovering very close to the threshold to begin what's called Clinical Order Set - Fever and Neutropenia Protocol. Long name with a bunch of steps to take for a chemo patient with a fever. We were soon given a private room and nurse and doc saw him right away. His temp was still so very close to the magic number that they decided to begin antibiotics. He got some tylenol and codeine (supposedly has cough suppressant properties), chest x-ray (looks good), and first dose of prophylactic antibiotics to cover any bacterial infection that may be brewing. He was seen by the pediatrician on call, who agreed with the ER doc that it's a standard cold virus but protocol would continue until blood cultures have been 48 hours to show any signs of infection.

The nurses decided not to use his VAD port for drawing the bloodwork. I was happy they didn't want to access his port unless necessary, but not happy about having to tell Jax that he'd be getting an arm poke without any numbing cream. He agreed to it on the promise I gave that the lady knows what she's doing and it wouldn't be as bad as he anticipated.

It was bad. 

She missed his vein the first time and spent a minute re-aligning to try to make it work, but to no avail.  The plan after that was to give Jax a break, put Emla on the other arm, and have a different tech come attempt the IV. 15 minutes later that happened and she got it on the first try.

Not long after that we had to get going with accessing his VAD. Sadly, the Emla I had put on it at home 3 hours prior had lost its potency so he felt the pinch on that one also. 3 pokes with very little numbing is hard for a boy who usually doesn't have to feel much from pokes. 

As grumpy as he was, he was rocking some totally rad bed head.

Once the meds kicked in he started to feel much better.

We're thankful this didn't happen in the middle of the night, thankful that this is a rare occurence for us (only his third fever since diagnosis in April 2014), and thankful it seems to be viral and he'll come through just fine. Many oncology patients and their families spend countless days and nights in the ER and admitted to hospital, dealing with serious infections and complications from the powerful medications used to attempt to restore these kids to health. I just found out that our little buddy Marek was in ICU for 9 days this past month. That could just as easily have been our situation.

As I write this he's been asleep for about 2 hours with just a few coughs. In a strange twist ... now that I'm actually allowed to give him Tylenol to make him more comfortable (because he's already getting antibiotics and blood cultures have been drawn) ... he's refusing to take it. He did accept a Gravol though, so there's that. I can tell he's having a good sleep because he's doing the cute little sigh-coo thing that he does when he's sedated for his LPs.

After his LP on Tuesday, in his loopy state, he said "That was fun! That was the best back poke ever! Mom - you have FOUR eyes, TWO noses TWO moufs ... and ONE CHIN." (Yay, just one chin!)