Monday, August 10, 2015

Hoping for boring

It's been a crazy couple of weeks and I keep not posting because it seems like there is too much to say, but it just becomes more each day.
The short version:
Mark's third round of chemo went remarkably better. We went home as scheduled on July 31st and had no emergencies between then and his follow up the next Tuesday. On Tuesday his platelets were low, so they have him a transfusion, which he had an allergic reaction to, gives and difficulty breathing. The good thing is his oxygen saturation stayed good. They couldn't finish the transfusion and required benadryl and a double dose of steroids to get it under control, but we were able to go home that evening.
Wednesday night at 11pm he got a nose bleed. When it hadn't stopped after 10 min we called oncology. They said to take him to the ER, so off we went. It ended up lasting over an hour, but his platelet count came back "ok" (low, but not awful), so we went home.
Thursday was quiet and Mark had a good day. That evening he began to get really tired and uncomfortable, complaining of headaches. The next morning we had an appointment early, so we just have him some meds and headed to sleep.
Friday morning he woke up very tired. He took his medicines and we jumped in the car, where he began to complain of stomach pain and extreme nausea. I knew the best thing would be to get him to the clinic asap. He began throwing I'll as we pulled out of the driveway, and then his nose began to bleed. When we got to the clinic, He was still bleeding, so I went back and asked if They could see us early (it was only 8:40 am). They figured he would need blood so they immediately put us on the day treatment side of the floor. His labs came back low for everything, which meant he'd need two different transfusions. He was also complaining of pain all along his GI track and he was starting to run a low grade fever that kept creeping higher.
They decided to admit him. Then his port stopped working, so it took about an hour to get that cleared up. Finally got his platelets, pretreated with benadryl, and only a few hives.
Moved upstairs, got red blood pretty late. Overnight his fever climbed to 103 which got us a weekend stay.
Saturday he needed red blood cells, and his stomach and throat still hurt but otherwise he felt better.
Sunday he got platelets again, this time he had a few more hives than Friday even with the benadryl pretreat.

Later in the afternoon he began to get a couple of hives again and was complaining of difficulty breathing, but his oxygen levels looked fine, so they just gave him some more benadryl and he improved. They had no idea why and I think they sort of thought he was overreacting.
Everything was on track to go home this morning. No fevers, all his bacteria cultures came back negative, no more vomiting. The only issue was his platelets were still a bit low and he'd had another bloody nose over night. Instead of having us leave and have to head back of he got another bloody nose at home, they decided to give platelets and then we could head home. He'd had benadryl a couple hours before, so they started the platelets and I got started packing. Everything packed up, I settled down to get some work done before we left. And then Mark coughed. And coughed again. "Mom, what are they giving me right now?" "Platelets" "Well, my throat feels scratchy and my eyes feel like they're swelling."
I looked up. His eyes were swollen so much they had wrinkles underneath them. Red blotches we're starting to spread over his body. I called the nurse and let her know. Nurses swooped down upon us. They gave him benadryl again. He kept getting worse. They gave him steroids. The doctor showed up. He kept getting worse. His oxygen was dropping. Another dose of steroids. The doctor and a nurse were constantly checking his breathing sounds. His oxygen levels kept going down. The nurse kept looking at his vitals then looking at the doctor, over and over, like she was just waiting. Finally she left the room. She came back and said she had an epi pen waiting and had called the respiratory therapy people from the picu. His whole body was covered with swollen red patches. More people came in. Finally the order was given to give him an epi pen.
His oxygen started to go up. Everyone began to relax. Of course, an epi pen means several hours of observation. So, here we are, trying to be uninteresting (his toes did begin to turn blue about half an hour after the shot, but they had us elevate them and they pinked up again). I've ordered lunch. They're planning to have us out of here by 7pm now. We're heading home with two new meds. Out next appointment is Thursday. Here's hoping for a couple of boring days at home :).
Hugs to you all!

4 comments:

  1. Btw, platelets are suspended in plasma. Plasma has proteins, some unique to the individual. Most people's bodies don't care, but sometimes someone's body will recognize that the proteins don't belong (hey, you're not from around here, are ya?) and it will attack the "invaders" , which is what we call an allergic reaction. It's impossible to know ahead of time how much of a reaction Mark will have. They are going to premedicate with both benadryl and steroids from now on, and perhaps lower the point at which he has to have a transfusion (right now they want to keep him above 30- that is the norm for patients with brain tumors- lowering it more than that puts him at increased risk of bleeding. This is the reason behind the crazy long nosebleeds. Platelets help the blood clot.) The only other thing they can do is have the platelets processed to remove some of the pladma, but evidently that is very resource intensive and it damages the platelets so that they arent as effective. Or they could stop chemo. Which really isn't an option yet.
    Oh, and that picture was taken after the swelling started to go down a bit.

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  2. Poor guy! What an ordeal. I'm with you - let's go for boring. Prayers continue, of course.

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  3. Really tough. Praying for you Mark. God bless you!

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  4. My heart so hurts right now! But you continue to amaze me! Covering you with prayers! Hugs! Love you all!

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