Well it was a long week with 3 clinic visits, but the visits themselves went pretty smoothly.
On Monday, traffic seemed worse than it should for a 10:30 appointment, but the rest of the day wasn't bad. Eric's nurse accessed his port with the regular 1" needle as if there haven't been any problems the past couple weeks. Once the bloodwork came back, we chatted with Eric's doctor. He needed platelets, as expected and his hemoglobin was down so we planned for a red blood cell transfusion at one of our appointments during the week. We discussed the new med - dose, frequency, side effects - and I went to pick it up at pharmacy. They had to order it in and it wasn't available until Wednesday, but they were able to get one dose from the inpatient pharmacy so Eric could start taking it on Monday as planned. It is an interesting dosing schedule and he only takes it on Mondays & Wednesdays. The platelets were available and got started fairly quickly and we arrived home at 2:40 just as school was getting out.
In the evening, around dinner time, Eric started his new med. It is 3 pills but they're very small. He is already very annoyed by the number of pills he has to take and adding this new med, plus another prophylactic med, doesn't help. So he's been practicing swallowing more than one at a time. He thought taking 3 at once was a bit ambitious, but took 2 no problem, and then the third separately. Eric felt fine the rest of the night and woke up feeling fine on Tuesday and went to school for the whole day. And I finally got to go for a massage after having cancelled appointment after appointment since October!
Wednesday our clinic appointment was early because it was all they had available. We had to leave at 8am which we think is actually the worst traffic of morning rush hour and it did take us over an hour to get to clinic. Just as we arrived in the parking lot, Eric said he felt a little light headed but it seemed to pass quickly. Eric remained accessed from Monday so he didn't have to go through another access on Wednesday and also made getting bloodwork quite quick. We had planned for more platelets on Friday and knowing that Eric would need red blood cells during the week, I asked Eric if he wanted a short day Wednesday and a really super long day Friday or two medium days. He opted for 2 medium days so his doctor had already ordered the blood for Wednesday. Unfortunately, Wednesday is a busy day in the clinic and it took awhile to get a nurse assigned, but since everything was already organized, it went pretty quick once we got started. The reason we were in on Wednesday was to monitor Eric's side effects from the new med, especially the sodium level in his blood stream. The bloodwork did show that it had fallen somewhat, but was still safe.
Wednesday evening at home, Eric only ate about 2 noodles for dinner and then said he didn't feel good. He was feeling pretty nauseous, but didn't want an anti-nauseant and still needed to take the Wednesday dose of his new med. Unfortunately, he tossed back two of the three and then immediately threw them up. By the time this happened, I was out at trivia (my weekly 2 hour sanity break) and Eric sent me a text: Mama I threw up but its ok you stay at trivia. I should mention that Chuck was at home, and I don't do well with vomit anyhow, but that was the sweetest message. When I got home, Eric was still awake. He did manage to get the new med in, but had some others to take and was feeling poorly still. I managed to convince him to take an anti-nauseant and then he was able to get the other meds done and tuck in to bed by 10, which is very late for him!
Thursday Eric had really hoped to go to school and just wasn't feeling well enough. It breaks my heart to see him not able to do things he wants to do. However, the 2 of us had a much needed pajama day and with some anti nauseant, he did improve later in the day. Though he does have a new (to him) side effect of dizziness. We're used to dealing with the nausea and have meds for that, but there isn't much we can do for dizzy. He's not eating much, but still very into fruit and milk, and that is about it. Thanks for the strawberries Kristy! Strawberries, watermelon, mango and kiwi are not cheap in January! Why doesn't he want oranges???
Friday morning back to clinic for a 10:30 appointment. Eric did wake up nauseous, but was happy to take an anti nauseant before the car ride. We're used to traffic being great on Fridays and especially at 10:30, but it wasn't. It wasn't awful either though. Eric was still accessed from Monday so again quick blood work, and again the platelets had been pre-arranged so were fairly quick, only in clinic for 3 hours! Which is almost 5 hours door to door, but about the best we can hope for with a transfusion involved. At clinic Eric said he wanted a grilled cheese. He really likes the Starbucks ones, with a chocolate milk 2 go, and I was happy to get him anything he would eat. However, he only ended up nibbling on the crust a little. At least he drank the chocolate milk. His sodium was down a little more, but dr is not too worried yet since Eric didn't have another dose of the new med until Monday. He did ask us to come back in to clinic on Monday so that he can see what is happening with the sodium in between the Wednesday dose and the following Monday dose, hoping for a little rebound to keep him safe. Eric's port was de-accessed at the end of the clinic visit and he was super happy to be able to scratch under the dressing! After a long week of clinic visits it was lovely to have Jill bring us dinner; thank you Jill!
Eric has spent the weekend on the couch watching tv and eating fruit. I cancelled his swimming lesson for today (Sunday) because I didn't know if he'd be up for it. However, he does seem to be feeling better today since he asked for french toast for breakfast and ate half a slice. If you have any tv suggestions for a 9.5 year old boy, please let me know! He keeps rewatching the same shows because he can't find anything new he likes. He has really enjoyed Gravity Falls, Lego Ninjago, Lego Dreamzzz, and Young Sheldon.
I have no good pictures this week so here's a shout out to all the hardworking moms out there courtesy of Honey Nut Cheerios.
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