115) Club Med

I started writing a post a couple of days ago. I finished my first paragraph, and was halfway through my second when I went to save the document. My software crashed, and ate my work. I attempted a recovery, but all I was able to retrieve was a blank document. I thought about a do-over, but I was frustrated, and decided to abandon it instead of re-writing. My lost post was about our hospital stay from late November to early December. During our stay, I was fairly open and candid about what was happening, and I’ve debated re-hashing the story, especially having to do a re-write after having already starting. In the end, I thought back to one of the reasons why I started writing. I wanted to immortalize our, and E’s experiences. E is too young to remember most of this, and he’s obviously not going to write any of it down. In the end, even though many people who might read this are already aware that we were in the hospital for an extended stay, it is part of our story, and deserves to be recorded here.

Day 0: Thursday

I received a text from my wife on Thursday November 28^th in the afternoon. E had been dropped off at my in-laws’ house, she was leaving for work, and E had an elevated temperature. She asked if I could leave work should E’s temperature spike to a full blown fever. E was okay for the afternoon, but in the evening, his underarm temperature jumped to 37.9°C, so I alerted our satellite hospital we were on the way, grabbed some hospital-stay food, threw a couple of bags together, and drove to Scarborough Centenary. I was fairly sure we wouldn’t be staying, but I didn’t want to get out there and find myself up the proverbial creek should things go sideways. E was accessed, blood was drawn, and then I tried to contain him in the POGO room. A couple of hours later, our nurse came back with the results of the bloodwork. Anything below 0.5 for neutrophils is considered neutropenic, and neutropenia + fever = hospital admission. The nurse had a bit of a look on her face & told me that E’s neuts were 0.4, so we’d be staying. @#$! I carted our stuff into room 737, blissfully unaware that this would become our home for the next 8.5 days.

Day 1: Friday

E had bloodwork done early in the morning, and by about 8:30 – 9:00, we found out his neutrophils were still 0.4. At home, my wife got J ready, and delivered to school, and made arrangements with her mom to pick him up afterwards. She packed her own bag, and joined me at the hospital mid-morning. E is an energetic, and exhausting kid, so we decided that we were both going to stay at the hospital and take turns chasing him around because he never sits still. Nanny had a sleepover at our house with J, and we were able to do a video chat with him to say hello.

Day 2: Saturday

Daily bloodwork: neutrophils were still 0.4. At the time, we were hopeful that they’d jump up to or above 0.5 on Sunday morning, and they’d be able to discharge us. That morning, my wife returned to the house to grab some more clothes & food, and also to pick up J. While my wife was gone, E tugged a little too hard on the line from his IV to his port. The needle in the port didn’t come out, but it dislodged enough that the drip wasn’t going in properly. Instead, the saline was pooling under his skin, and some of it was leaking out the needle hole. I only discovered it because E’s shirt started getting wet in a circle around his port. I thought he might have spilled water on himself, but when I lifted his shirt, the dressing around his port was all soaked, and I quickly figured out what had happened. I carried him to the nurses station, and asked if someone would be able to re-access him. My wife returned after lunch, and we had both of the boys with us at the hospital on Saturday afternoon, and overnight. The pair of them were their usual matches-and-gasoline selves when they’re together, and were running around the floor chasing each-other, laughing, shrieking, and doing their bouncing-off-the-walls boy things. I was horrified, and was (unsuccessfully) trying to keep them calm, under control, and quiet. Luckily, there were very few other patients in the hospital at the time, and the nurses were happy to see the brothers up & about, and having fun.

Day 3: Sunday

Daily bloodwork: neutrophils dropped to 0.3. That was a bit of a punch to the gut, since Sunday was >48 hours, and we were hoping to be released if his neuts had have bumped to 0.5 or above. We had port access incident #2 on Sunday. I had picked up E to carry him back to our room for a diaper change. When I set him down on the bed, I noticed that his shirt was somehow covered in blood. Lifting up his shirt, I noticed that the cap on the end of the access line tubing had somehow came off, and blood was gushing out. There are little clips on the tubing to clamp off the flow & I though quickly enough to activate one, and that stopped the blood. We called the nurses in, and they checked him over. He didn’t need to be re-accessed, but they brought a spare cap for the end of his access line, and attached it, to permanently solve the blood issue. Also that day, one of our nephews was having a birthday party that afternoon. Due to the neutrophil counts dropping, we obviously weren’t going to make it to that, but we could still get J there. We asked for a day pass, which the on-call pediatrician reluctantly gave to us. We had to be back by 6 for E’s next antibiotic dose, so we packed up J, and E, and drove through a snowstorm to my in-laws’ house. We dropped off J, and they would take him to his cousin’s birthday party. We returned to our house to yet again grab a few more clothing items, and stopped at a grocery store to pick up some food to keep in the hospital room. Because of the snow & gross road conditions, J slept over at my in-laws’ house that night & my mother-in-law drove him to school the next morning.

Day 4: Monday

Daily bloodwork: neutrophils dropped to 0.1. Our regular oncology team returned, and promptly told us that if they had have been working on the weekend, they would have sent us home Sunday. E’s fever had been gone since late Thursday night, and 0.3 neuts weren’t terrible, especially when weighing isolating yourselves at home, versus all the germs E could possibly pick up in the hospital, including from the shared toys. Now that we were at 0.1 neuts, we definitely wouldn’t be going anywhere. Arrrrgh. While chasing E around, I noticed there was quite a large conglomeration of nurses around the nursing station. Two weeks ago, when we had to take a trip in to the satellite hospital for fever, after having had been at SickKids during the day, there was a really nice & pregnant nurse who had been taking care of us. It turns out she had her baby over the weekend, and she was bringing him up to the pediatric floor for an appointment. It was nice to be able to bump into her to pass along our congratulations.

Day 5: Tuesday

Daily bloodwork: neuts held steady at 0.1. Other counts were dropping as well, and his hemoglobin was down to a level where the standard procedure is to give a transfusion. Blood was ordered, and a few hours later, some O- arrived on the floor, E was hooked back up to the IV, and he received the transfusion. By the time it was finished, you could notice a difference in him. E had been quite pale the past few days, and now you could see colour back in his face. He ended up having a small reaction to the transfusion; he had some small hives appear in various places on his body. It’s not an uncommon occurrence, and E was prescribed Benadryl every 12 hours. Tuesday was also the day that we received a Love Box from The Super Sophia Project. There were cars, crayons, paints, and a few other nice goodies inside. E let out a shriek of excitement when he saw the cars. He was so excited!

Day 6: Wednesday

Daily bloodwork: neuts held steady at 0.1. By this time, the days are turning into a blur, and the frustration is creeping in. I really don’t remember much about Wednesday, other than I went back to the house to bring home dirty laundry, and to pick up clean clothes & some more food. At this point, E had been on antibiotics for 6 days, and his stools were basically liquid. His poor little bum was so chapped & red, and he was soiling through his diaper to his pants almost every time he went. Job #1 at home was to get as many clean pants for E as I could possibly find. My mother-in-law was still staying at our house with J, taking care of him, and getting him to/from school. Wednesday was the last day she was able to help, so after that, we had to call in the cavalry.

Day 7: Thursday

Daily bloodwork: neuts still held steady at 0.1. Another day where we wouldn’t be getting out, though every day, our nurse practitioner was advocating for us to go home to our oncologist at SickKids. We heard that we would likely be discharged the next day, a Friday. Our oncologist wanted one more day of bloodwork, and she was actually more concerned to see which way E’s hemoglobin was trending after Tuesday’s blood transfusion. My mom came out on the GO train; I picked her up at Guildwood, and she came back to the hospital for a quick visit before driving my car home so she could pick up J from school.

Day 8: Friday

Daily bloodwork: neuts still held steady at 0.1, but our oncologist was satisfied with E’s hemoglobin levels, so we were going to be discharged in the afternoon! Finally! Our oncologist had also said that E’s immunoglobulin levels were low. This could be the reason why he’d had a cold hanging on since the middle of September, and why his netutrophils cratered at 0.1. It wasn’t a rush, we didn’t have to do it that day, but they wanted to give him an infusion of immunoglobulin, also known as IVIG. Immunoglobulin itself is not blood, but it is a blood product, and there is a small chance of having a reaction to it. We decided to proceed with the IVIG despite the small risk, because it would be a boost to his immune system, and also because Christmas was on the horizon. We’d just had 8 days in the hospital, and we didn’t want a repeat of 2017 when we spent Christmas in the hospital. Because of the risk of a reaction, vitals are taken before IVIG is started. It begins at a low rate, with more vitals being taken about 10 minutes later. Assuming everything is okay, the rate of flow is increased in steps until it is at full flow. Everything went okay with E, and the flow was stepped up to max. His vitals were checked on the max setting, and he was fine. About 5 – 10 minutes after the check of his vitals is when things started to to sideway. E stood up, hunched over, and started grunting like he had to poop, or his tummy hurt. Shortly after, he started shaking uncontrollably. I ran to get our nurse practitioner who stopped the infusion, gave him a steroid, Tylenol, Benadryl, and oxygen. E was having a bad reaction to the IVIG at full flow, and this caused his temperature to spike, and his heartrate to jump to 180. The shaking was a by-product of the fever. Normal resting heartrate for a 3 year old should be around 120. I wasn’t overly impressed with the on-call pediatrician, who took his sweet time coming down to our room from the ACU (acute care unit). He didn’t even check E over, he just stepped into the room and told us that the reaction was because he couldn’t handle the IVIG at full flow. He said re-start it at a lower rate, let him finish up, and then he left. Uhhhhhh, @#$! you – there’s no way E was getting any more IVIG that day after that sort of reaction. Our nurse practitioner & RN agreed with our sentiments 100%. E had gotten about 75% of his dose, it would provide a boost to his immune system, and they both thought it was best to shut it down. They had to fill out some paperwork, an incident report I think, and we also found out that no, after the reaction, we wouldn’t be going home that night. We would also be transferred to a room just down the hall in the ACU for the night. E was hooked up to a monitor to check his pulse, heart rate, respiration rate, and oxygen levels. By around 7:30, his fever was pretty much gone, and he was asking to get out of bed because he wanted to run around and play.

Day 9: Saturday

Daily bloodwork: neuts actually jumped to 0.2! Saturday morning, J had a birthday party for one of his classmates to attend. Since we had not been discharged on Friday as planned, I asked my mom if she was able to take J, because he had really wanted to go, and I didn’t want to cancel last minute. On Friday, after all of the excitement (excrement?) with E’s adverse reaction to the IVIG, SickKids had sent instructions to discharge us once E was considered stable. At around 9:30am, the pediatrician had cleared him, and we were ready to go! An hour later, after about 3 trips of carrying our stuff to the car, we signed the discharge papers, and we were on our way. We were home a bit after 11:00am, and my mom & J returned from the birthday party around 12:30pm. J was quite happy to see us, and his brother home. J was acting off for most of the afternoon, and by bedtime he felt warm & had a fever. He was feverish on Sunday, as well as on Monday, so he was kept home from school. A few days later, J started breaking out in spots, and we realized that it was Fifth disease, also known as Slapcheek. My wife came down with it too, and so did E, but his fever did not return, so we didn’t need to go back to the hospital. I must have had it as a kid because I didn’t catch it, and I seem to have immunity. My mom stayed Saturday afternoon, cooked a nice stew for us for dinner, and stayed overnight until Sunday. On Sunday, my dad drove out to pick her up, but they also stayed to watch the boys for a while. This let us go out for a little break, to have lunch, and to also get caught up on some Christmas shopping since we had lost some time and had fallen behind schedule due to our hospital stay.

Epilogue

I’d like to acknowledge, and offer thanks to our families for all of their help during this hospital stay. Without their help taking care of Jonah, those 8.5 days would have been exponentially more difficult. The nurses, our oncology team, hospital staff, and doctors did a wonderful job of caring for us. Thank you to everyone on the pediatric floor of Scarborough Centenary! I’d like to acknowledge The Super Sophia Project (https://www.thesupersophiaproject.ca/) for the Love Box that E received. They put together packages, known as Love Boxes, which are given to children who have a hospital stay. They rely on donors & volunteers for items, and sorting. They are working on becoming an accredited charity, but they’re worth of a donation of time, items, or money if you’re looking to support a great cause. As an aside, Sophia was diagnosed with leukemia at age 2, completed treatment at age 4, and is now a 5 year survivor. I’d also like to express my gratitude toward Ronald McDonald House. There’s not an actual house at Scarborough Centenary, but they have a room which is staffed mostly by volunteers. In this room, you can get food, coffee or tea, snacks, or use it as a respite area if you need a bit of downtime to decompress. They have also have sleep & shower facilities. We didn’t use the sleep/nap rooms, but we did take advantage of the shower facilities. From personal experience, let me tell you how much better a simple shower can make you feel, after you’ve been confined to a hospital for days on end. If you’re looking to make some end-of-year donations, Ronald McDonald House is a great organization which is directly helping parents and families of hospitalized children. Donate at https://www.rmhctoronto.ca/How-to-Help/Donate-Now.aspx. Lastly, a big thank you to anyone, and everyone who offered support, words of encouragement, or just lent a sympathetic ear. It was a difficult, trying experience, and I’m crossing my fingers for smooth sailing until EOT.