In my last blog entry I wrote that Maya’s diarreah seemed to have gone better…. well I was completely WRONG!! Wednesday we went back to the clinic and stool samples were taken. I was told that it was just a protocol as it was most likely Irinotecan (chemo drug) which was causing this. Surpringsily, Maya’s blood work, including lites were perfect, even her creatinine was at a low of 39 (a bit in the high side, but low for Maya). This of course was due to Karen and I sitting next to Maya the day before giving her liquids every 20 minutes. The staff said “you are doing such a great job! on keeping her hydrated and running the feeds” (Maya was not eating anything at the time), “keep up the good work” and then we were sent back home.
Oh boy Wednesday afternoon and wednesday night things got worse, Maya continued not eating and her diarreah just became a nightmare. At night, poor Maya went to the washroom 21 times (yep I counted them :-)). Around 5 am she finally slept until 9am and then things started again. Maya did not want to leave the toilet. At some point both Maya and I fell asleep in the washroom. Not pretty, it was tiring. Even when the home care nurse came to change Maya’s central line dressing on Thursday afternoon, Maya had to go the washroom several times. Keep in mind that this dressing change is a sterile procedure. The nurse and I had to make sure that the now uncovered central line was kept sterile at all times, not easy with Maya moving from the diningroom to the washroom with not so much notice, because it was “I have to gooooo nooooow”. Yes there were a few accidents along the way when we could not make it to the washroom on time.
— Maya please wear diapers
— Noooooooooo, I am a big girl, diapers are for babies
— Please wear them, if you have an accident it will be easier to clean and we can throw it away
–Noooo, I am not going to wear them, you are just freaking out mom
3 minutes later…
— Mom I think I will wear a diaper, I just had another accident
Finally we settled on Pull ups, oh boy, I had not bought them in ages, I had forgotten how expensive they were.
Then, I got a call from SickKids saying that Maya tested positive for Roda virus (basically a stomach bug), a bit of a relief in a way as thankfully it was not the chemo drug that Maya is schedule to take again in the upcoming days. Thursday night was the same thing, every time I ran a feed or I gave Maya some pedialyte, Maya was just getting rid of them as soon as they came in. We had a very loong night. But finally she was able to fall asleep at around 4am. On Friday morning we headed to SickKids, Kirby came with us. We were all exhausted and very, very cranky. We had to go directly to an isolation room as they did not want Maya touching anything. It was already Friday and Maya had not eaten anything since the previous Saturday. The scale showed her weight at 15.5Kg, the week before she had been at 16.9Kg. Inmmediately the dietitian came to talk to us. Blood work also showed that Maya’s electrolytes were all over the place. There was a concern that Maya was not keeping any of the feeds and we did not want her to keep on losing weight. The clinic was busy and we were stuck on the isolation room for hours until they came to tell us that Maya needed to be admitted as they wanted to give her TPN to prevent her from losing more weight.
Maya needed to be admitted, but there were no beds at the oncology ward at SickKids. The options were:
a) Go to emergency and stay there until Sunday when there could be a bed available. Negative part: emergency would not administrate TPN.
b) Go to Credit Valley, a satellite hospital for SickKids in Mississauga. Not a pediatric hospital, but they had a pediatric ward with oncologist nurses trained at SickKids. They had a bed and could administrate TPN inmediately.
We chose B and off we went to a hospital we had never been to before. To all of us Toronto Residents, and all of us who have supported SickKids throughout the years, we need to be proud of SickKids, as it truly is an outstanding pediatric hospital, with outstanding staff and outstanding services. We noticed the difference as soon we stepped into CreditValley. Did I ever, ever complained about the kiddie showers at SickKids? I take that back, I sooo take that back, there were no showers at CV. The rooms at SK look like little suites good for the patient and for the parent staying with the child. At SK you see sanitizers everywhere, inside the rooms, outside the rooms, supplies are in the room for patients to use. Maya was complaining of tingling (neuropathic pain) and she wanted a hot pack. At CV, they told me to use my own heating pad as the hot pads were hard to get, and they brought some hot towels instead. So every time Maya would scream in pain, I had to run to the nurse station, get the key to the kitchen, heat up the hot pad, and run back to the room. Of course during that time Maya went ballistic. Finally, They really saw Maya in pain and I was able to get 2 hot packs. I treasured those hot packs. I would only pop them right when Maya started to have the tingling, then I would run to the nurse station, get the key to kitchen, heat up our hot pack and go back to the room. The nurses at CV were very, very nice and kind to all of us, the lack of supplies was not in any way their fault. We just got very spoiled at SK with free TV, cheaper parking rates for parents, a food menu where kids can pick what to eat (as opposed to a set menu), a bed for the parents (as opposed to a chair that extends into a flat surface), etc, etc, etc.
This is not to criticize CV, this is just to THANK all of YOU who have supported SickKids. Definetely all the donations, all the funding, all the fund raising have truly contributed to SK being a top notch pediatric hospital.
Surprise, surprise, We got to CV hospital and Maya starts asking for food, and she had gone four hours without going to the washroom. Anyhow, Friday night TPN was not given to Maya, the decision was to wait for Saturday Morning. Saturday morning comes, and Maya was having runny stools but every 5 hours or so, pheeeew nothing compared to the ones every 10-15 minutes. Maya continued to ask for food and the resident decided to try introducing back Junior peptamen at half the strength (1/2 water, 1/2 peptamen), and another surprise Maya was handling those perfectly. Then it was increased to 75% strength and Maya continued to do well…..No TPN at the end. By sunday morning we were dying to come home. Maya’s blood work showed her electrolytes were back to normal and we were sent home in the afternoon.
At home we continued with the feeds, they are now back to once a day as Maya has fully recovered her appetite.
On Tuesday morning:
–Mooooom My stool is formed!!!
I had a big smile on my face, yes this kid was listening to all the stool talk with the doctors ” is it formed?”, “is it runny?” so Maya knew a formed stool meant no more diarreah and she was truly happy for it!!!!
Maya is doing well now. We are hoping for the damn roda virus to never come back again.
Then it was turn for Mom to get sick. By saturday morning I did not feel well. Kirby slept at the hospital with Maya that night. By Tuesday I was feeling extremelly ill, I could hardly get up from bed. My hormones were racing, all that lack of sleep from the previous days, the coughing, the headaches, the running nose, the exhaustion, all just accumulated at once. On Wednesday, Kirby took Maya to the clinic for a check up (all the blood work was perfect), and I was able to stay home and sleep most of the day. Apparently the visit to the clinic was soo easy and smooth that Kirby made fun of his wife’s complains that going to the clinic alone would be sometimes difficult :-). My answer to that is try going there 3,4,5 times a week and you’ll get suffocated by the cancer world, by all the waiting, the crying, the running around. Yes there are easy days and there are difficult days, and we all crave for those easy days, easy days for Maya is all we ask for.