The last couple of days saw some important activity. Yesterday, Liza went to the local St. Luke's Hospital for her PICC line (Peripherally inserted central catheter). Because of Liza is such a hard IV stick and the imminent stem-cell infusion, we thought it a good idea. In fact, it was Liza's primary care physician that first suggested it.
The instructions were that I was just to drop Liza off 90 minutes before the procedure and pick her up after. COVID rules: no visitors. But Liza we were able to explain her positional headaches and they altered the arrival time and arranged for a quick trip to her room and a bed. That sounded like progress.
When we arrived, I wanted to at least walk her inside. She is quite weak and I wasn't going to leave her until they made me. We got to the temp screening and check in just inside the main door where I said something like "She's the patient and I know I can't stay I just wanted to bring her in." The woman who seemed in charge said "Oh, she is allowed one visitor. You can stay." So I did.
We sat together in a single chair spaced out from all other chairs, but facing in the same direction. East I think. She tried to get comfortable by leaning on my lap. We went through the short registration process and then sat back down. Then an older nurse named Lorna came out and gathered up. She too said that I could come into the room. More surprises.
We were finally able to get Liza lying flat, after being there for a little less than an hour. Lorna had her change clothes and took her vitals, signed some more paperwork, went over the procedure and allowed us to ask some questions. She made Liza comfortable by dimming the lights and getting her a blanket. She was lovely. She's been working at St. Luke's for 6 years, but she's obviously been a nurse for much longer.
We chatted a bit in the dim light after Lorna left. Liza was trying to get comfortable. Her headache was raging pretty good from the trip over and sitting up. Pretty quickly a nurse named Heather - donning light pink scrubs and a surgical cap - came and collected Liza. She looked at and spoke only to her and was very happy, calming and purposeful. She told me to stay put and that Liza would be right back.
I stayed in the room and fiddled around with a word game on my phone that is supposed to make your smarter. Still in her bed pushed by Heather, Liza popped back in in about 20 minutes or so. She said "That was about the easiest thing I've done so far. Didn't feel a thing." She showed me the line and I asked Heather a few questions. Liza changed clothes and Heather walked us out. That was it.
I got Liza home and in bed as soon as I could. Her headache was still pretty bad, and we arrived home just in time for meds (which we took with us just in case). She tried to relax and stay flat. I made her another smoothie.
While she lay down I got to work on the big project of the day - finalizing and mailing two medical history and application packets to Boston (Harvard) and Dallas (Cyst specialist). I commandeered the kitchen table, adjacent chairs and floor to set out two dozen stacks of paper. Scan reports, surgery reports, blood test results, CT, MRI, DSM, disks, papers, applications. I had been working on this for over a week already. Liza's mum did the hard work of copying and labeling all of the scan disks - that too took her many days. After about three hours I had two neatly organized and labeled packets, one with a long application, both with a full complement of disks, ready to ship out. A quick trip to UPS and it was done. I have one (hopefully) phone call to make for registration with the Boston doctor, but I should be able to do that Monday, about the time the packet arrives. Now we continue to wait.
Meanwhile we are waiting to see Dr. Burish and Dr. Kim downtown, simply to catch them up on what we've done, what hasn't happened and to hear their counsel about what alternatives we have for next steps. We are particularly interested in exploring more about Liza's head, skull, brain, ear and cervical spine. The earliest they could get us in to see both - which is very convenient - is October 21. I will also try to get back with Dr. Vrabek, the neurotologist/ENT. I have some specific things to ask him about that a friend helped me with.
In the early evening on Friday, Liza's arm began to ache. We expected this and it definitely met our expectations. A couple of cold packs helped. The PICC line is sutured into Liza's arm with two stitches. It has a double headed spout coming out, held securely to her arm with a mesh wrap. The internal catheter is threaded all the way up her shoulder, culminating near the top of her heart. The entrance would is tightly covered by a large padded water-proof bandage. We are working out the regimen of saline flushes and bandage changes with a nurse. Hopefully the stem-cell infusion happens quickly.
Today, Saturday, Liza did not get out of bed much at all. She's been teary off and on, distraught with continued pain and the inability to function with any sense of normalcy. She took an afternoon nap, which hopefully helped. I ferried the kids back and forth to their friends houses for some extended time with good people.
We're settling in for the night and all four of us are wearing weariness on our faces. I expect it will be an early night.