1:12 PM:
Okay, here's the latest. They are going to give Bella plasmapheresis starting tomorrow. She will get 5-7 treatments total and it will happen every other day. That puts her in children's for likely 14 days, maybe longer.
The plasmapheresis requires a vas-cath (didn't look up spelling) and putting that in requires a surgical procedure ( though no cutting). The surgical resident explained that process to Brian and me. About halfway through the explanation, I had to excuse myself. I do not handle medical descriptions very well and was really close to ending up on the floor. Anyway, they will put her under general anesthesia to get the cath in and because of that they have not let her eat all day. Bella is not a happy camper! Sweet Bella has turned into a MONSTER!
They are about to come for her. We're all scared.
On the way to get the vas-cath
4:17 PM
Doctor came out and said cath went in well and she should be done soon (thinking 4:30ish). I'm just waiting in the surgical family waiting area. This picture is me trying to comfort Bella prior to her procedure (looking ragged and old but that's just the way it is these days).
11:07 PM
It's been a trying day. It took Bella a long time to wake up from her anesthesia. When she did, she was in a lot of pain so they gave her some strong pain meds which led to more sleep. I sat with her and a nurse in the recovery room for 45 or so minutes before they finally brought her back to her room. While in recovery, we had to wait for a chest x-ray to be read (I hadn't even known they were going to do a chest x-ray). Apparently they had to be sure they didn't puncture a lung or do any other major damage when putting the catheter in. Wow! I am not cut out for the medical field!
Bella was finally allowed to have a drink once she woke up. She downed a box of apple juice pretty quickly and she was cleared to order a normal dinner. I ordered her some chicken and broccoli but she hate my salad instead.
She's in a lot of pain. The vas cath was placed in her upper left chest area and it is extremely tender. The docs say she will get used to it and they expect the pain to subside by late tomorrow. I pray that's true. Bella asked me not to post a picture of the cath so I will respect her wishes. It's pretty big - at least the hole is - and there's a large sticker on her that says STOP and some stuff about only professionals touching it. Scary!
Bathroom trips (or any movement) have become incredibly difficult. Bella's legs are at the weakest they have been - including our previous stay here. She has very little control over either leg. She cannot raise them to a bent position while lying in bed. For the past 3 weeks, Brian or I have supported her under her arms (facing Bella, we put our forearms under her armpits) to help her move from bed to wheelchair, etc. With the catheter where it is and being so tender, pressure under her armpit hurts badly and transfers are nearly impossible. My back is hurting pretty badly tonight.
Bella handled things pretty well once she got to eat. She was able to remain calm.
I hope she handles the plasmapheresis well tomorrow. They will come early - 6 or 7 AM to draw blood out of the vas cath. They have to test her blood every day that they do the plasmapheresis so she'll have blood drawn every 2 days. I hope they don't wake me for that part. I haven't spoken to the specialist in charge of that process yet. I was told he will come by in the morning and tell me everything. Not looking forward to those details.
Anyway, we are in room 251 this time - next door to the room we were in last visit. This room has a working couch bed and I'm hoping it's more comfortable than the sleeping arrangements in the other room.
Bella was finally allowed to have a drink once she woke up. She downed a box of apple juice pretty quickly and she was cleared to order a normal dinner. I ordered her some chicken and broccoli but she hate my salad instead.
She's in a lot of pain. The vas cath was placed in her upper left chest area and it is extremely tender. The docs say she will get used to it and they expect the pain to subside by late tomorrow. I pray that's true. Bella asked me not to post a picture of the cath so I will respect her wishes. It's pretty big - at least the hole is - and there's a large sticker on her that says STOP and some stuff about only professionals touching it. Scary!
Bathroom trips (or any movement) have become incredibly difficult. Bella's legs are at the weakest they have been - including our previous stay here. She has very little control over either leg. She cannot raise them to a bent position while lying in bed. For the past 3 weeks, Brian or I have supported her under her arms (facing Bella, we put our forearms under her armpits) to help her move from bed to wheelchair, etc. With the catheter where it is and being so tender, pressure under her armpit hurts badly and transfers are nearly impossible. My back is hurting pretty badly tonight.
Bella handled things pretty well once she got to eat. She was able to remain calm.
I hope she handles the plasmapheresis well tomorrow. They will come early - 6 or 7 AM to draw blood out of the vas cath. They have to test her blood every day that they do the plasmapheresis so she'll have blood drawn every 2 days. I hope they don't wake me for that part. I haven't spoken to the specialist in charge of that process yet. I was told he will come by in the morning and tell me everything. Not looking forward to those details.
Anyway, we are in room 251 this time - next door to the room we were in last visit. This room has a working couch bed and I'm hoping it's more comfortable than the sleeping arrangements in the other room.
Our greeting from the nurses:
This is one place you do not want to be welcomed back to!
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