Hi All! It’s me, Brittany, taking over the journal to give an update. I can’t begin to describe how incredibly tough AND kind Amanda is. Not long after I arrived yesterday, they began her PLEX treatment which works to filter all of Amanda’s blood to get out the anti-bodies (it’s way more complicated than that, but I’m not great at all of the technical details so that’s the bare bones gist of it). A provider has to stay and monitor the machine and treatment the whole time. He was a very nice and quiet gentleman, who for the first half of her treatment got to listen to our girl talk about decorating cookies and crafting and such. I’m sure it was all very useful information that will help him survive in the real world.
The second hour of Amanda’s treatment was more eventful – as the PLEX machine was working on one side of her body, the nurses began working to figure out the IV situation since she was now, once again, without a good IV for medicine. As Barkley mentioned in his last post, they struggle to get IVs in her tiny veins and once she’s been in the hospital for a bit it gets even harder as her veins roll more. The regular nurse contacted multiple other providers for help and I observed them gather in the hallway – I jokingly said to Amanda, “They’re having a team meeting about you in the hallway, shouldn’t we be invited?” They were trying to figure out the best plan for getting her a new IV on the weekend. I could tell they were taking the situation seriously, as they were taking their time and trying to make sure they got it right the first time. They got a sonogram machine to search for veins and to watch to make sure the new IV line went in properly. The first guy tried his best but ultimately failed. I was concerned and irritated. I told Amanda that we just need to tell everyone to immediately send in the best of the best – no horsing around as they say. The next guy who showed up looked like a doctor or surgeon by the way he was dressed. He said to Amanda, “You know in the video games how each level has a boss? I’m the level 10 boss.” (Meaning he was the best of the best.) He was confident and kind, explaining everything as he walked through his process. He got a better sonar machine, had the other guy assist him, and ultimately got it done. Level 10 IV Boss also used a lot of local anesthetic and I think it helped with the pain. Most of Amanda’s lower arm was numb. I jokingly said to Level 10 IV Boss, “So how do we get the cheat codes, so we can go straight to the Level 10 Boss every time?” He replied that the guy who tried the first attempt was the best – meaning they did use him straight away. I guess he wasn’t good enough though and they had to call for back up. Anyway, that just goes to show how hard Amanda’s veins are to get to – even the best have a hard time and sadly she’s gotta put up with the pain… but through it all Amanda is so sweet to everyone. She is truly amazing!
As the afternoon went on, we got the bad news about Zoey (Barkley and Amanda’s beloved furbaby). Zoey wasn’t doing good. The afternoon and evening were filled with lots of tears. I knew it would be hard, but I encouraged Amanda to FaceTime Zoey and talk to her. I’m just gonna stop right here for a moment to acknowledge that this really sucks – it’s the worst possible time for a terminally ill furbaby and the rotten cherry on top of a poop sundae. I’m laying it at God’s feet exactly that way because He knows life is hard! I prayed silently for God to give me the words, to help me help my friends, for God to give Amanda and Barkley strength and peace through this situation, and for God to give Zoey some peaceful rest because He is after all the Creator of all things. I also asked if I could pray with them out loud while we all FaceTimed Zoey – I felt like I bumbled my words and I wish I had done better, but as I type this out I’m reminded that God doesn’t need us to pray pretty. We just need to pray.
The last battle of the evening was over sleep meds. After everything Amanda’s body has been through, it takes a lot of convincing (aka Melatonin and Ambien) to get her body to sleep at night. The night nurse came by to give Amanda her sleep meds – 3 mg of Melatonin. Amanda politely informed her that wasn’t gonna cut it – she needs 5 mg of Melatonin and 6.25 mg of Ambien and that’s on a good day when she’s not on high doses of steroids which keep her awake even more. The night nurse understood and made the call for Ambien. She came back to let us know that the Fellow on duty wouldn’t give the Ambien. (Quick side bar, we have dubbed Fellows the “baby doctors” as they are still very much in training). The night nurse said she could call the Resident on duty (one up the food chain). I could tell Amanda was annoyed but not wanting to make a scene about it, so she told the Night Nurse not to worry about it. After she left, I told Amanda we need to have the Night Nurse call the Resident and that it didn’t matter if the Fellow got in trouble because Amanda needed to sleep so her body could heal. We agreed to ask the Night Nurse to call when she came back to deliver the measly dose of Melatonin, and we did. The Night Nurse called and UH-OH a Plot Twist… it turns out it was not a Fellow all along but a Resident who was being a stickler about the Ambien. Ugh. His answer was again No Ambien! The Night Nurse wasn’t ready to give up and said she would call at 11:30 pm again and she hoped he would prescribe it then if Amanda wasn’t asleep yet (which we all three knew without saying a word that Amanda wouldn’t be asleep by then). We watched a silly Christmas movie on Netflix while we waited. The Night Nurse made the call promptly at 11:30 pm and FINALLY got the approval for a one time dose of Ambien. Yes, one time dose, meaning we will do this same song and dance again tonight. I’m getting the lay of the land quickly though… I don’t have a problem being bad cop for Amanda, so we will get it figured out a lot faster tonight. Signing off for now. Please continue to send up prayers. -Brittany
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