10 AM:
Thank you all for the continued prayers! I believe that it is because of your prayers that Bella had a better time with the plex yesterday. Today I ask you to please pray that the EMG will not be painful and especially that it will tell us it is only Bella's nerve coverings that are damaged.
3:13 PM:
Still waiting for the EMG. Beginning to think it's not going to happen until Wednesday
5:23 PM:
Brian and I would like to send a heartfelt thanks to Shelby Adams for coordinating dinners and to all the people keeping us from starving Faith and Brody. We are eternally grateful for your generosity!
7:14 PM:
The love pours in from the mailbox, the kitchens, the Facebook comments and messages, the texts, voice mails and emails and even from my sweet Brody who picked these flowers for me yesterday and left them on my desk for me to find. It is humbling, overwhelming, and heartwarming to be on the receiving end of so many prayers and so much love. In spite of what we are facing, we are blessed.
Midnight:
The nurses tried to confuse Bella and me this morning by writing April 30, 2013 on the wall. Time means very little inside the walls of the hospital and if not for that note on the wall, I would have no idea what day it is. Even with that, I often forget. Anyway, Bella figured it out before I did and I fixed it (still forgot later that it was Monday). Bella slept really well - aside from waking me every few hours to be shifted from one side to the other. She likes to sleep on her side but is unable to roll her lower half over without assistance. I was grateful not to have to make any middle of the night restroom trips with her. Her general ped doctor and I decided to switch her from Benadryl at night to melatonin (with an order for Benadryl as needed). That has worked wonders in helping her to sleep more deeply.
Bella's appetite and mood were greatly diminished today. She didn't really want to eat anything but she did take in the food I forced upon her. She is very scared about this EMG. So scared that she covers her ears at the mere mention of those letters. It's really a shame that they weren't able to fit it in today. We are looking at most likely Wednesday. It's possible they'll do the test tomorrow but since she has a plex treatment, I doubt they will do this test also. I am eager to get through that part to see exactly what we are facing.
Today Bella and I met Dr Castro who is the neuro-muscular specialist and will be Bella's aftercare doctor. She talked to me about some different (scarier and rarer) forms of GBS but honestly, I tuned her out at some point. I'm not ready to look beyond this current hospital stay and the set of plex treatments Bella is getting. This is going to work! It has to!
Dr Castro did say that Bella will need inpatient rehab again (and likely for a while). I figured as much but it's still disheartening to hear.
We don't really know any more yet and won't know until later this week. They did say that we hope to begin to see improvements after the 3rd or 4th plex and (can't recall if I've shared this already) seeing some improvement actually means that they will do a 6th and maybe 7th treatment. If it works, they want to keep doing it.
Bella only had physical therapy today. That session didn't go so well. She is so weak and tires so very easily. After seeing her improve to the point that she was walking (with assistance) early last week, it's hard to see her not even able to sit. She was napping when the OT came by later in the day so she missed that session but I think she did her share of OT in the art studio. We did make it down there today and Bella painted a flower pot. She got upset with herself because her hands shake so badly that painting didn't turn out as she planned.
While she was napping, the massage therapist came in and worked on Bella's neck and shoulder muscles (I could use one too!)
She's been in a lot of pain the last few days. Transfer -from bed to wheelchair and back - are very difficult but the docs are going to put her back on neurontin. That should help ease her hip and leg pain a bit and I'm surprised its taken this long to get her back on it.
One of the many therapists/specialists Bella gets treated by is the respiratory therapist. They come in 2-3 times a day to check her breathing and they do that with this tiny plastic inhaler-like device that measures the strength of Bella's breaths. Last night Bella was on her side, ready to sleep when they came in to check her. Her best of 3 was a 32 but Bella knows that if she measures lower than a 35, they'll put the heart rate and oxygen monitors back on her (the 5 sticky things - sorry don't know the medical term) full-time (she just got them off yesterday). So she told the RT that she needed to sit up and try again and that time she measured a 38. Tonight she measured a 38, 39, and 40. This is one smart patient they have on their hands!
Tomorrow brings plex #3 and scheduled OT and PT sessions. Praying hard for an easier time with the plex and some resulting strength
Bella's appetite and mood were greatly diminished today. She didn't really want to eat anything but she did take in the food I forced upon her. She is very scared about this EMG. So scared that she covers her ears at the mere mention of those letters. It's really a shame that they weren't able to fit it in today. We are looking at most likely Wednesday. It's possible they'll do the test tomorrow but since she has a plex treatment, I doubt they will do this test also. I am eager to get through that part to see exactly what we are facing.
Today Bella and I met Dr Castro who is the neuro-muscular specialist and will be Bella's aftercare doctor. She talked to me about some different (scarier and rarer) forms of GBS but honestly, I tuned her out at some point. I'm not ready to look beyond this current hospital stay and the set of plex treatments Bella is getting. This is going to work! It has to!
Dr Castro did say that Bella will need inpatient rehab again (and likely for a while). I figured as much but it's still disheartening to hear.
We don't really know any more yet and won't know until later this week. They did say that we hope to begin to see improvements after the 3rd or 4th plex and (can't recall if I've shared this already) seeing some improvement actually means that they will do a 6th and maybe 7th treatment. If it works, they want to keep doing it.
Bella only had physical therapy today. That session didn't go so well. She is so weak and tires so very easily. After seeing her improve to the point that she was walking (with assistance) early last week, it's hard to see her not even able to sit. She was napping when the OT came by later in the day so she missed that session but I think she did her share of OT in the art studio. We did make it down there today and Bella painted a flower pot. She got upset with herself because her hands shake so badly that painting didn't turn out as she planned.
While she was napping, the massage therapist came in and worked on Bella's neck and shoulder muscles (I could use one too!)
She's been in a lot of pain the last few days. Transfer -from bed to wheelchair and back - are very difficult but the docs are going to put her back on neurontin. That should help ease her hip and leg pain a bit and I'm surprised its taken this long to get her back on it.
One of the many therapists/specialists Bella gets treated by is the respiratory therapist. They come in 2-3 times a day to check her breathing and they do that with this tiny plastic inhaler-like device that measures the strength of Bella's breaths. Last night Bella was on her side, ready to sleep when they came in to check her. Her best of 3 was a 32 but Bella knows that if she measures lower than a 35, they'll put the heart rate and oxygen monitors back on her (the 5 sticky things - sorry don't know the medical term) full-time (she just got them off yesterday). So she told the RT that she needed to sit up and try again and that time she measured a 38. Tonight she measured a 38, 39, and 40. This is one smart patient they have on their hands!
Tomorrow brings plex #3 and scheduled OT and PT sessions. Praying hard for an easier time with the plex and some resulting strength
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