Weekly Check Up Monday April 28 and Friday May 2

Another Monday morning clinic appointment to start the week! Eric's hemoglobin was low last week at 83 and he was a bit lethargic through the weekend, so we planned for a long day at clinic for both platelet and blood transfusions. I packed the big food bag, though Eric hasn't been eating much so it was mostly just fruit and cheese. We knew that the Child Life Specialist who feeds Eric's LEGO addiction was going to be on vacation, so we brought in our own LEGO set. Following Eric's last hospitalization, he was gifted quite a few LEGO sets from all of you lovely people. I am holding on to them for his next inpatient stay because he goes through them so fast as an inpatient, but I did let Eric pick one to take on Monday. 

So we were planning for a long day and in the evening Eric had swimming lessons and Joel had track and somehow I had to fit in voting. We were leaving the house at 8:30 and I thought maybe I'll just vote on the way and we'll be late to clinic and whatever because when will I have a chance otherwise. Chuck went a few minutes before me and was able to text me that it wasn't busy so I did decide to stop on the way. Turns out there was only one person in line and it was Chuck, so he let me go ahead of him 🤣 I was in and out in the blink of an eye and back on the road to clinic. And then, traffic was great and we actually got to clinic early! 

Eric had his port accessed and blood work drawn and then we waited, and waited, for the results. His platelets were 9 so he needed a platelet transfusion. However, his hemoglobin was 85, which was unexpected. It's not much of an increase, but we had expected it to fall under 80. I suggested to his Nurse Clinician that we go ahead with the red blood cell transfusion anyhow, if it was just a matter of having a long day at our next appointment Friday, instead of Monday. Our Nurse Clinician went to discuss with our Nurse Practitioner who requested a reticulocyte count. Reticulocytes are immature red blood cells. It turns out that his reticulocyte count is pretty high, so his Nurse Practitioner thinks it is possible his red blood cells will recover on their own without needing a transfusion. I was happy to not have the transfusion Monday and be able to go home earlier, with the possibility that Eric may not need one on Friday either; though I will believe it when I see it. 

Meanwhile, we were waiting for the platelets to arrive, and waiting and waiting. It was nice to have the additional 2 hours that a blood transfusion would have taken, but we were still there 4 hours, just under 6 hours round trip. Also, Eric decided that he was actually going to eat for the first time in a couple weeks, so he plowed through all the food that I brought plus the seaweed, apple sauce and Fruit by the Foot snacks that were available at clinic, and I still had to go to Starbucks and get him a grilled cheese and a chocolate milk. 

Once we were home, Eric had a couple hours to chill before heading out to swimming lessons where he graduated from Turtle 2 to Shark 1!!! (These are the British Swim School levels.) This kid amazes me everyday. Imagine having a hemoglobin count of 85 and not only getting out of bed, but enthusiastically attending swimming lessons and then excelling at it also. All that after spending the day at the hospital. Me and my hemoglobin of 145 had a nap after the hospital day. 

I had told Eric that he was free to go to school Tuesday and Wednesday. However, Tuesday morning Joel woke up stuffy and was staying home, so then Eric wanted to stay home too. He was happy to go to school Wednesday morning, but not too early; he's developed his mom's love of slow morning on the couch, oops! So he did go Wednesday, but arrived late and left early. He's not feeling too badly, nausea-wise, but he is tired, and out of practice attending full days of school. 

On Thursday, Eric's class had a field trip to UBC and they were taking a bus there. It sounded fun, but Coquitlam to UBC is pretty far and I was concerned about him feeling poorly and being stuck there. Eric and I discussed and elected not to attend the field trip. Thursday morning I surprised Eric with a trip to the pool! He was SO HAPPY! I don't let him go to the public pool due to being immune suppressed, but I figured it wouldn't be too busy mid week during the day and I called in advance to make sure they didn't have any school groups in. We stayed for more than 2 hours!!! Eric jumped off the diving board a bunch of times, and made me go a few too! We swam under water, did summersaults and hand stands, the lazy river, and tried to sit on a frog mat without falling. We raced until Eric realized that just by virtue of being taller than him I am much faster. There was also a fire alarm and the pool was evacuated, but luckily, they determined it was a false alarm before we made it out to the parking lot in our bathing suits. Three fire trucks came and turned off the alarm, thankfully; it was loud so we were floating with our ears under the water waiting for it to be turned off. All in all, I think it was a pretty successful substitute field trip. Though I am not sure Eric got off the couch again that day; he was pretty tired after. 

Friday we headed back to clinic for a 9am appointment. Eric was super annoyed that we had to leave the house at 8am, interfering with his slow morning on the couch. Traffic was surprisingly good for that time; got to love Friday traffic! We got our room, Eric's port was accessed and blood drawn. Then we waited, and waited. It took quite awhile to get the results, but no surprise that he needed platelets. While his pre-meds were running, to prevent an allergic reaction to the platelets, his doctor and Nurse Clinician came in to review the numbers and do an exam. His hemoglobin was 84, so those reticulocytes from Monday haven't materialized into anything significant, though they are managing to hold his count relatively even. over the last couple weeks his hemoglobin was 83, 85, and then 84. Eric also hasn't had a red blood cell transfusion since April 2, so a whole month. We didn't need to do a transfusion, but could elect to have one in order to give Eric a little more energy. However, we chose not to. We didn't want to stay at the hospital all day, and Eric is doing okay. He does have plans for the weekend but nothing too strenuous. Also, we know we're back in a few days for another check. Eric's doctor was going to get the reticulocyte count again to see if that was just a blip on Monday or if the count is still high. However, we didn't have that number when we left. With all the waiting, it ended up being a 4 hour appointment, even though the platelet transfusion only takes an hour and another 30 minutes for the pre-meds. Though with the early appointment, we still got home at a very reasonable time. 

Today, Saturday, we're headed out to the Balding for Dollars main event on the grounds of Children's Hospital. No one in the family will be balding this year, but it's a great family event with face painting, mascots, a magician, and, what Eric is most excited about, sno cones!