Eric is much more interesting these days than I would like him to be. Since having a medically complex child, I've learned boring is best!
Monday morning Eric had a dentist appointment at the dental clinic at the hospital. He hasn't been able to have a cleaning due to the risk of bleeding and infection, but it is really bothering him so we are hoping to be able to arrange that soon. In the meantime, they had a look and did some x-rays. We saw a fellow there and she kept having to go ask her attending questions so it was sloooooow. We went from there to the Oncology clinic. We ran into Eric's Onc on the way in so he called the surgeon who came up right away. The surgeon was feeling Eric's port to see what to do. Unfortunately, surgeons are used to unconscious kids, and combined with needing a good feel of what was happening, Eric found it very painful. The surgeon did say the port still seems to be in the pocket it is supposed to be in, so if it can be accessed then we don't need to do anything, but if it is bothering Eric, they could do a revision surgery. Obviously, we'd like to avoid surgery if possible so this was pretty good news, but Eric is uncomfortable so he was wanting it "fixed." The port is not quite in the same place as before and Eric was really scared to have the access and also afraid the port might move again on de-access. It did hurt a fair bit, but the access was very easy for his nurse. Even though the bloodwork was sent STAT, it took TWO HOURS to return the results, which is insane, so then the platelets were finally sent up. After the bloodwork returned, Eric's Oncologist sat down with me. The blast count in Eric's peripheral blood was up to 2.4 even though he only finished this round of treatment 5 days ago, on Wednesday. His Onc thought we should probably not delay and start another round of treatment soon. With just a few minutes of discussion, we decided to start same day. This was mostly because Eric's port was already accessed and we could leave it that way for the 5 days of treatment, rather than de-accessing and re-accessing when he is really uncomfortable with it. Since his blast count isn't *too* high (relatively speaking) we are able to do the treatment outpatient, but Eric didn't want to. It had already been a long day and we were looking at driving home during rush hour and he just didn't want to deal with the daily back and forth. However, I was able to schedule the appointments for midday and its a quick infusion so I know we can go back and forth pretty quickly. Surprisingly, when we were finally able to leave, the drive home wasn't too bad, only an hour. We were home late and Eric had a rough day so I told him he could pick something for takeout and he chose KFC because he loves popcorn chicken.
Unfortunately, before the food arrived, Eric vomited. Mid vomit he said "worst day EVER." It is unusual for him to be that nauseous with this chemo and with an anti-nauseant administered before the treatment, but it could happen. Only, then he vomited again and again and again. I tried to give him some Gravol in addition to the anti-nauseant he'd had before, but he just vomited it up. Eventually, it was almost 8pm and we thought we'd try to just put him to bed. Which is when he said that he was so cold, he was shaking, so I checked his temp and it was 39.7 which means we have to go to the ER. I called the Oncologist on call and quickly packed our overnight bag. It is usually already packed, but I had unpacked it to go to Prince George over Spring Break and never repacked it. We hit the car and were already halfway to the hospital when the Oncologist called back. They called ahead to the ER and we went right into a room when we arrived. Luckily Eric was already accessed because ER accesses are not fun. They took blood for cultures and started him on IV antibiotics right away. The concern is a potential blood infection, due to his port; this is a remote, but life threatening concern. He threw up 3 more times in the ER. I think it was about 12 times in 5 hours, but it did stop around 10:30pm. Interestingly, Eric's Oncologist had mentioned to me earlier in the day that based on Eric's bloodwork, his liver was a little inflamed, which could be due to a virus or possibly some other reasons. Sometimes it feels like he has a crystal ball. Since Eric does not currently have any neutrophils (germ fighting white blood cells) he was admitted. We got into a room on T8, the Oncology floor, about 1am, and settled into bed about 2am.
After a good sleep in until 11am, Eric woke up feeling much better. Luckily, the blood cultures aren't growing anything and while most of the tests came back negative, one did come back positive for Sapovirus. This is one of the viruses that causes gastroenteritis, or what we commonly call the stomach flu. Even with Eric's symptoms, there was no reason not to proceed with treatment so he had Day 2 of chemo on Tuesday. He doesn't have much of an appetite but no vomiting or fever. He also had a blood transfusion Tuesday after they took all of his blood on Monday at clinic and again Monday evening in the ER.
On Wednesday, Eric seemed to be feeling quite well, though still not much appetite. He is on contact precautions (isolation) so can't leave the room, and I am not allowed to leave either, unless I leave the floor completely. So far Eric has watched both Moana movies, both Frozen movies, 4 Toy Story movies plus Lightyear, and both Incredibles movies and he did complete a small Lego set. He had Day 3 of treatment and we had a visit from a surgeon and to Radiology. During the time we had been in hospital, Eric had been complaining of pain in his left upper thigh and groin, but on Thursday the pain increased significantly, even with a lot of pain meds. A surgeon came by to check for a hernia, but no hernia. He went for an ultrasound of the area to see if they could see anything, but it came back normal. Despite a day without viral symptoms, the night was very rough; all night Eric was waking up and rushing to the bathroom, again and again.
Thursday, after very little sleep for both of us, Eric had Day 4 of treatment. Luckily the events of the previous night had at least stopped. Thursday morning Eric's Oncologist came to check on his leg and groin and sent Eric for another ultrasound. This time to look for a blood clot in the area, but that also came back normal. We were able to change rooms in the afternoon which was amazing! We had been in one of the rooms where the couch/parent bed doesn't fold down like a futon, and instead it was like sleeping on a park bench. So I actually hadn't slept much in 3 nights. Also on Thursday, there was some construction right outside our room where they are turning an open desk area into a closed office. We were pretty sick of the sawing and drilling and nailing by the time we got to switch rooms.
Friday, Day 5 of treatment, and the day we are supposed to go home, right? Sadly no. While the viral symptoms are mostly gone and treatment is done, the leg/groin pain remains significant. In the morning Eric's Oncologist came by for me to sign some forms in an attempt to access the meds for the new mutation. He mentioned Eric would go to x-ray just to rule out bone issues as the cause of the pain since he has been on high dose steroids in the past which can cause bone problems. He also said that this virus, just like the flu, can cause body aches and pains, but it would be unusual for it to be just one concentrated spot. In the afternoon, Eric's doctor came by and said the x-ray was normal. She also said she would request an MRI, but that it was unlikely to happen over the weekend. By Friday evening, I think we have watched every Disney movie made in the last 30 years. Eric went over 6 hours with no leg pain and was able to start on another Lego set. At the beginning the lack of pain was due to pain meds, but it just kept on not hurting. I was very excited and may have jinxed him because sometime between 8-9pm it came back. He got some pain meds and eventually was comfortable enough to sleep, around 10pm.
Saturday, today, is Day 6 at the hospital. A bonus day. Technically they are all bonus days since I had planned to do this treatment as outpatient. Eric slept in until 10am this morning which is shocking for him. Hopefully it helped his body heal. We don't have anything planned for today - no tests, no transfusions, no treatment. Our nurse this morning did say there was a chance he would get an MRI today, but on the weekend we could easily be bumped for someone more urgent. So far Eric hasn't had any pain or pain meds today, but shhh... I am not going to jinx it this time. We are pretty sure we are here for the weekend, but beyond that we just don't know.
Today I am grateful for Eric feeling better, for tv and movies on demand and for a hospital couch/bed that folds down to accommodate my mattress topper.
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