Days 34-37. Hoping that the Third Time's a Charm!

As I have noted in a previous blog, Bethany first, then we noticed that I was getting sick just about every 5th day. While it was very encouraging getting out of the hospital in just under three weeks after the transplant, having to return now three times to the EC, the first time lasting 13 hours, and the second two times being admitted is not very encouraging.

Tuesday Day 34, stared by throwing up. Is there a nicer word for that? Regurgitating? But that was followed by a delightful caredriver in Vicki Schellenberger, who took me to my ATC appointment, which was fairly uneventful if I remember correctly. But of course, that was three days ago! Best ask Vicki! However, I DO remember, because I have it written down in my notebook, that I had a headache all night and got no sleep. I also have which meds I took at what time, but I'm pretty sure that would be going too far in what you're interested in reading.

Wednesday, Day 35, began with a 6:15 regurgitation that wouldn't quit. We were back at the MDA EC by 10:30am. (We learned that it's not called ER at MDA. It's the EC...Emergency Center, probably because there is so much to it. Almost a half a floor, individual rooms, and a lot more which Paul would be much more able to tell you about because I am always out of it while there.). They got IV meds in me right away, several types of tests run including CT Scan, EKG... (Paul told me this; I don't remember.). It took a long time to get a room (I do remember that), and it was at least 2:30 before getting admitted to P7 24, Critical Care Units. They still couldn't get me back on Stem Cell, but they are still trying. The rooms on this floor are tiny, but the nurses are extremely efficient and that's what is important!

They were on me like white on rice. They had me hooked up with electrodes for full-time EKG monitoring, that thing on your index finger that monitors heart rate, and of course all my CVC lines were busy with meds connected to my beloved pole. Throughout the evening and into the night, they did more CT Scans, Chest X-rays, etc. Again, between the headache, trying to maneuver all the wires, and all the nighttime checks, I got very little sleep.

Thursday, Day 36, every doctor team from neurology to my regular stem cell team came to visit, work, coordinate, plan, question, reason, wonder, and hope that this course of action might work...for more than five days! They put me back on the steroid IV. (Yes I will re-plump but I will not cry this time.) Then they will increase my level of Topamax, hoping that the higher dosage will better maintain the headaches. The problem seems to stem from the vast majority of my maintenance drugs necessary from my transplant. Almost all either cause headache and/or nausea. And I cannot get rid of those meds. So we have to figure out how to manage the side effects. The bad news of the day was that I had my first real fever. They gave me IV antibiotics. The good news of the day was that they removed the EKG electrodes and finger heart monitor, I had no headache or nausea during the night, limited night checks, and I slept like a baby! What a blessing!

Friday, Day 37, the headache started inching back this morning and by the time I had finished a mid-morning breakfast and finally returned several phone calls, it was back in full force. My sweet nurse, Oanh, filled the IV pump with the good drugs, brought me a cool cloth, turned off the lights, and made sure I had some uninterrupted sleep. I felt quite a bit better an hour or so later. Paul came up after a shorter day at work, brought my packed bag from mom's, helped me with my CVC patch and shower, and we enjoyed a nice but too short visit. He needed to get the yard mowed, the bills paid, take care of the house (why does the house continue to have needs at the same time I do?!), so he can come up and spend the weekend with me. They plan to keep me here until Monday.

So this journey of ours continues to be a bit of a rollercoaster. But we will continue to fight the good fight. We will keep the faith. We will finish the race.