We’re home. That was a scary weekend. Mathew was much sicker than I realized. I thought we were traipsing off to the hospital for blood work on Friday maybe followed by another unit of blood. The extremely low blood counts immediately concerned staff followed by the discovery of Mathew’s fever. At that point he was considered “neutropenic”; a post chemo patient experiencing a fever who is then a medical emergency. His immune system was wiped out and something was happening in his body; an infection of some sort. With those blood counts Mathew’s body could quickly become septic if the infection spread to his blood.
Everything was compounded by his starving body. The doctors and nurses paid attention this time when they realized he refuses to eat and doesn’t want anything unless it is given intravenously. The seriousness of his refusal to eat was impressed upon Mathew as he slowly improved compliments of 6 units of blood and 2 units of platelets plus antiobiotics (over the last week). He is scared of the feeding tube and is trying to get the liquid nutrition in. We are now tracking caloric intake and lessening the importance of water intake and focussing more on fluid with calories. Another lesson learned in such a hard way.
Mathew had sores everywhere by Sunday. One ear was raw, his nose, his mouth and throat, his bottom and little tiny sores on his legs. Nothing healed until all the transfusions kicked in and he started taking in liquid meals. We learned that nothing heals with extremely low hemoglobin. We also learned something extremely helpful:
CLUB SODA WORKS FOR MOUTH SORES!
I thought it was just for people who could tolerate the carbonation however it works when it goes flat too, which is the only way Mathew would take it. The drink has salt and chemical ingredients that work to clean and heal mouth and throat sores. Once Mathew started swishing and gargling small amounts of club soda then all kinds of gunk was spit out. That was followed by his getting a dose of Nystatin and in a few days his mouth, tongue and throat started healing and he felt so much better. His lips are still peeling though so Vaseline is keeping them moist.
Mathew couldn’t open his mouth enough for a regular toothbrush so I purchased a baby toothbrush to clean his teeth. I used only water on his teeth as even the Biotene toothpaste hurt him (Biotene is a non-foaming toothpaste that is gentle on mouth; right after chemo started Mathew could no longer tolerate his regular toothpaste). That might be a useful tip for someone out there.
Mathew’s sense of smell is very acute these days. Slight odours I can’t detect cause his face to wrinkle in disgust. His usual shampoo bothers him to where we switched to Johnson’s & Johnson’s baby shampoo even! The gentle odour didn’t register during his shower today so baby products might be the way to go for sensory affected patients like Mathew.
Anytime Mathew gets home for a hospital stay he wants a shower. Usually he falls asleep first (today was no different) so the shower is the second activity after getting home. He can’t shower at the hospital because of the IV equipment and he was so ill until Tuesday that I didn’t want to bathe him (other than usual toiletry stuff). It is blissful to soak in the water and wash off the sweat and grime. He is definitely better because he didn’t need to be wrapped in hot towels while showering today.
There were all these clues we missed as to how ill he was… did you see that photo from Friday? He was so pale he had yellow splotches ~ and this after receiving two units of blood only 2 days before! I think I need a photo guide in a prominent place here. If Mathew looks like Photo 1 he is okay. If he looks like #2, take him to the doctor. If he is anything like Photo 3 bypass everything and go straight to the ER! I’ve regressed back to the basics and need something equivalent to “See Spot Run” to know when my son needs some professional medical help (I just need plain old professional help obviously).
We were educated in the hospital codes this last stay. We heard the following codes being called out over the hospital intercom system:
Code white – aggressive patient
Code yellow – missing patient
Code blue – stopped heart
Code red – fire
Code yellow blared out most frequently. You listened pretty hard when a code white was issued. There was a code blue outside the front entrance to the hospital (I got quite a few looks when I muttered something about that person probably just receiving a medical bill for “supporting care”), but the scariest was the code red. It was somewhere on the fourth floor and it went on and on for a good five minutes at least before the “all clear” was issued.
We witnessed a more spectacular fire event last evening at the hospital, or more precisely, right outside Mathew’s window. There was a cracking/ booming noise at the same time his window flashed bright orange. Immediately the entire hospital fell into darkness and we all started squawking. It took almost a minute before the emergency generators kicked in and restored scaled down lights and electricity. John and I looked out the window and watched a fire burning immediately adjacent to the hospital at ground level. It was too dark to see the area around it to know what it was. Although we alerted staff to what we witnessed….no one seemed overly anxious except the patients in the two adjacent rooms. Looking out the window again we watched the fire grow dimmer then go out.
A few minutes later a fire truck, with flashing lights and blaring sirens, pulled up outside. We watched the firefighters turn on flashlights and hunt for the source of the fire and after a few minutes of them wandering around not even close to the fire’s location John went down and took them to the location we saw the flames (me frantically pointing from the fifth floor window didn’t attract any attention. Maybe they thought our location was the psych ward??). He returned a bit later and reported the strong, acrid smell of an electrical fire. He said it was a transformer that blew and probably a cable that subsequently burned.
On top of that excitement, Mathew was so peppy that he partied on until after 2 am. The nurse who crept into our room with her flashlight on at 1:30 am to check on him was amazed to see we were on our iPads, watching a movie and talking up a storm. That was nothing; by 2 am he was singing all the parts to the “Veggie Tales” song…even the warbling peas. It was hilarious. I did eventually coax him to bed because mornings come early in the hospital, like it or not.
All stays quiet on the ward until around 7 am when the hustle and bustle of daily activities kick into gear. The hall lights go on, day staff show up and breakfast is served whether or not you want it. Machines clack and clatter, reports print off and staff call to each other across the floor. Frequent patient visits and checks begin; medication, IVs, etc and the ever-present interest in possible bowel movements. After 7 am today we never did get back to sleep; in my case I badgered the nurses to get Mathew’s blood in to the lab early and to get the results back to the doctor as soon as possible so we could get out of there.
Those nurses are awesome; either that or they couldn’t wait to get rid of me! Mathew was ejected…er, released by 11:30 am and we hurried out into fresh air (ha ha ha, well, Saint John’s version of slightly stale, polluted air) and home.
Mathew’s next blood work is set for early Friday morning so the results are back to the hospital in time to determine if he is getting his cycle # 6 chemo next week. If the numbers are good he checks back in on Sunday (nooooooooo) and the frequent trips to the bathroom pushing the IV pole start all over again.
Unless something changes I don’t plan on blogging for a few days. Friday’s appointment is early in the morning and Saturday I’m off to Fredericton to deliver some stuff Kristen needs for next week. Then on Sunday we’re back at the hospital. Meantime I want to enjoy chilling at home with my homeboys.