12:40 PM
Bella's first plasmapheresis started about 45 minutes ago. I think I've been having an out-of-body experience for the last 2 hours. Not quite sure how I'm still standing but the nurse wants me here to watch for changes in Bella and she's very scared so I wouldn't leave her.
10:12 PM:
To put it mildly, today was hell. Bella woke several times during the night and we had to make the difficult trek to the restroom each time. At 6:20, the nurses arrived to draw her blood. I was given misinformation last night about the vas cath. They cannot use that for anything other than the plasmapheresis (aka plex). Although she had a normal IV in her arm as well, they poked her in the other hand to draw the blood. With these blood draws every other day, they are checking for 4 things: calcium levels (has to do with how much of a medication to give along with the plex but cannot recall what type of med), CBC (complete blood count to check the platelets – if low, they would use less anticoagulant during the plex), the percent of red blood cells and PT/PTT (didn’t write down what the last 2 are for). Maybe Carrie or Katie can offer some guidance on those.
Bella’s stomach was hurting all morning so she did not feel like eating much for breakfast. The neuro medical student came in for an eval, then PT came by for her evaluation. Next we saw the neuro resident. In the midst of all this, numerous nurses were in and out of the room. The transfusion doctor came in and began the long explanation of plex. I listened well and even asked some questions. The science of the plasmapheresis process is pretty cool – if you’re into science (which I am not). However since it’s happening to my daughter…not so cool. While the transfusion doc was in, Grandma Diane and Grandpa Tom arrived with a cinnamon roll for Bella. Cinnamon rolls have been the only thing that Bella has requested to eat over the last few weeks and this was only her 2nd one. Somewhere during the transfusion doc’s explanation, I began my out-of-body experience. I believe I returned to myself finally at around 4 but I left for quite a while. Perhaps this is one of those times where God was carrying me because I honestly don’t know how I remained upright all day.
The (male) nurse for the transfusion doctor is the person who sets everything up and stays in the room observing Bella and the process for the entire 2+ hours. He came in to begin setting up around 10:45. When he actually plugs the tubes from that big machine I posted a pic of earlier to Bella’s catheter, anyone in the room has to wear a mask. The catheter is so large and in a main artery that the risk of infection is high, so they do whatever possible to minimize that risk. That’s the reason why they cannot use that cath for those regular blood draws. We donned our masks and I had to hold the top of the cath in place and hold Bella’s hand AND try not to pass out while the nurse hooked up the tubes. If I weren’t out of my body, I might not have been able to watch the massive amounts of blood that were pulled out of Bella’s body. I was even able to handle the nurse talking me through (and showing me through a viewing window on top of the machine) exactly what the huge machine was doing (spinning Bella’s blood so the 4 parts separate – the red blood cells are heaviest and fling to the outside while the plasma falls in the middle (and is yellow). The plasma is where the “bad” antibodies are so this process draws out the plasma and then replaces Bella’s red blood cells along with donor plasma.They start out slow and with the least amount of medicine to ease the patient into the process and then toward the end of the 2 hours, they are using more medicine and spinning faster. Bella didn’t handle the end part very well. She had managed to eat a snack of strawberries and some cinnamon roll in the beginning but wasn’t able to hold that down later. It got very scary there for a while when she started vomiting.
Bella has appeared the sickest today of the last 3 weeks. She’s not able to eat much and cannot regulate her temperature. She doesn’t have a fever but when she gets hot, she reacts similarly to when a person’s fever breaks. She starts sweating and thrashing about. I’m really not sure how much of this is related to the anesthesia from yesterday and how much is a reaction to the plex. They are planning to give her some Zofran for the nausea before the next plex treatment and before all future treatments. Bella is at her weakest so caring for her is extremely time-consuming. There was very little rest time today and eating was just an afterthought. My back is very sore from all the Bella lifting I've done.
We stabilized for a bit this afternoon and Bella took a much-needed nap. She looks so very tired – even the general ped doctor commented when she came in while Bella was napping.
Docs all say to give the plex 3 treatments before we expect to see any improvement. She’s scheduled to receive treatments Sunday, Tuesday, Thursday and Saturday 5/4. She starts working with OT and PT again tomorrow and then will see them daily M-S.
Bella did manage to take in a milkshake and some chicken noodle soup for dinner. She was beginning to look better when I left her with Brian tonight. The one positive is that the cath site does seem to be less sore, as the doctors promised.
This hospital visit is so much worse and scarier than the last time. When we were here previously, Bella was able to wear her normal clothes and take baths. We just had to be careful of the IV in her hand. This time, she is in a hospital gown because of the vas cath.
There was another concert in the hospital today but Bella could not go because her plex treatment was going on at the same time, plus she hasn’t felt well enough to go to any of the activities that they have here.
Bella’s stomach was hurting all morning so she did not feel like eating much for breakfast. The neuro medical student came in for an eval, then PT came by for her evaluation. Next we saw the neuro resident. In the midst of all this, numerous nurses were in and out of the room. The transfusion doctor came in and began the long explanation of plex. I listened well and even asked some questions. The science of the plasmapheresis process is pretty cool – if you’re into science (which I am not). However since it’s happening to my daughter…not so cool. While the transfusion doc was in, Grandma Diane and Grandpa Tom arrived with a cinnamon roll for Bella. Cinnamon rolls have been the only thing that Bella has requested to eat over the last few weeks and this was only her 2nd one. Somewhere during the transfusion doc’s explanation, I began my out-of-body experience. I believe I returned to myself finally at around 4 but I left for quite a while. Perhaps this is one of those times where God was carrying me because I honestly don’t know how I remained upright all day.
The (male) nurse for the transfusion doctor is the person who sets everything up and stays in the room observing Bella and the process for the entire 2+ hours. He came in to begin setting up around 10:45. When he actually plugs the tubes from that big machine I posted a pic of earlier to Bella’s catheter, anyone in the room has to wear a mask. The catheter is so large and in a main artery that the risk of infection is high, so they do whatever possible to minimize that risk. That’s the reason why they cannot use that cath for those regular blood draws. We donned our masks and I had to hold the top of the cath in place and hold Bella’s hand AND try not to pass out while the nurse hooked up the tubes. If I weren’t out of my body, I might not have been able to watch the massive amounts of blood that were pulled out of Bella’s body. I was even able to handle the nurse talking me through (and showing me through a viewing window on top of the machine) exactly what the huge machine was doing (spinning Bella’s blood so the 4 parts separate – the red blood cells are heaviest and fling to the outside while the plasma falls in the middle (and is yellow). The plasma is where the “bad” antibodies are so this process draws out the plasma and then replaces Bella’s red blood cells along with donor plasma.They start out slow and with the least amount of medicine to ease the patient into the process and then toward the end of the 2 hours, they are using more medicine and spinning faster. Bella didn’t handle the end part very well. She had managed to eat a snack of strawberries and some cinnamon roll in the beginning but wasn’t able to hold that down later. It got very scary there for a while when she started vomiting.
Bella has appeared the sickest today of the last 3 weeks. She’s not able to eat much and cannot regulate her temperature. She doesn’t have a fever but when she gets hot, she reacts similarly to when a person’s fever breaks. She starts sweating and thrashing about. I’m really not sure how much of this is related to the anesthesia from yesterday and how much is a reaction to the plex. They are planning to give her some Zofran for the nausea before the next plex treatment and before all future treatments. Bella is at her weakest so caring for her is extremely time-consuming. There was very little rest time today and eating was just an afterthought. My back is very sore from all the Bella lifting I've done.
We stabilized for a bit this afternoon and Bella took a much-needed nap. She looks so very tired – even the general ped doctor commented when she came in while Bella was napping.
Docs all say to give the plex 3 treatments before we expect to see any improvement. She’s scheduled to receive treatments Sunday, Tuesday, Thursday and Saturday 5/4. She starts working with OT and PT again tomorrow and then will see them daily M-S.
Bella did manage to take in a milkshake and some chicken noodle soup for dinner. She was beginning to look better when I left her with Brian tonight. The one positive is that the cath site does seem to be less sore, as the doctors promised.
This hospital visit is so much worse and scarier than the last time. When we were here previously, Bella was able to wear her normal clothes and take baths. We just had to be careful of the IV in her hand. This time, she is in a hospital gown because of the vas cath.
There was another concert in the hospital today but Bella could not go because her plex treatment was going on at the same time, plus she hasn’t felt well enough to go to any of the activities that they have here.
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