Hospital Discharge/Maintenance Round 6

We were discharged from the hospital on Thursday, July 16th. It has taken me this long to update the blog because I came home from the hospital sick as a dog and I am just now starting to get my energy back.

Rewind to Thursday afternoon...

Kaitlyn received her lumber puncture at 1:30pm. Since we were in the hospital, her procedure was assisted by the "sedation team". Which sounds like it would be a good thing, but having them there was much more nerve wracking for some reason than just having Dr. Keuker and nurse Helen in the clinic. After her procedure, we found out that they used a drug called Propofol to sedate her. You may recognize the name of the drug as it is associated with the death of Michael Jackson. I was NOT happy to learn that they used such a harsh drug with Katie because she does absolutely fine on the milder drugs that they usually use in the clinic. I am not sure what those drugs are, but I will be finding out so that I know for future reference.

After her procedure, she had to lay on her back for 45 minutes which wasn't easy because she woke up extremely irritable from the sedation. This is also not typical of her normal reaction to the drugs used in the clinic.

Shortly after we returned to our room, the infectious disease team came in to look Katie over and confirm the decision to send her home with an at home antibiotic. With that news, we started packing up the room and getting ready to head home.

The nurse stopped in with the discharge paperwork and the IV nurse came in to deaccess Katie's port. This was another point of disdain for the ER. Once the IV nurse removed the needle, I asked her if she could tell the size of the needle. She responded, "1 inch". I repeated in disbelief, "1 inch??" And she confirmed that I had heard correctly. I had her check the size of the needle because upon arrival in the ER, the nurse asked me if we used a "3/4 needle" and after double checking my notes, I told her , "No, we use a 5/8 needle". Now, from previous visits to the ER, I know that this is not a needle size that they keep on hand in the ER. But, she followed me into the room with a port accessing kit. Before they accessed her, I again asked, "that is a 5/8 needle, correct?". To which the nurse replied, "Yes". So, not only did she use the incorrect size needle on Katie (which caused her discomfort for the duration of her hospital stay), but she out and out LIED to me!!! This really set me over the edge with this ER and I can guarantee that there will be letters written about this trip to the ER. The care that Katie received while in that ER was less than acceptable, WAY LESS than acceptable.

In summary, today's "clinic visit" consisted of the following:
1) a blood draw
2) a lumbar puncture
3) Vincristine (Chemo)
4) IV Dexamethasone (Day 1 only)

This cycle will consist of the following:
Vincristine - Day 1 (same dose as previous cycles)
Methotrexate (oral at home chemo) - Days 8 & 15 (same dose as the last cycle)
6-mercapturine (oral at home chemo) - Days 1-14 (same dose as the last cycle
Dexamethasone (oral at home steroid)- Days 1-5 (same dose as the last cycle)

She will also be taking an at home antibiotic, Clindamycin - Days 2-6.

Next planned clinic visit will be in three weeks, August 6th.