Becca's Wish Trip........Update:September 2011.....Photo's....Sorta :)
- Thread starter llurgy
- Start date
Well, I'm glad Becca's feeling less nauseous, but I am sorry to hear about the aspiration. Sounds like that explains her decreased energy.
Again, 2 steps forward, 1 step back. You guys have the patience of Job!
Praying for all of you,
Alison
Again, 2 steps forward, 1 step back. You guys have the patience of Job!
Praying for all of you,
Alison
llurgy
DIS Veteran
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- Oct 2, 2008
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A Day in the Life of Becca
Today Rebecca started the day with a flying leap!
Mandy arrived around 7.40am and Becca was already awake after a decent nights sleep with only very few disturbances.
By 9am Rebecca was dressed, washed, hair brushed, teeth brushed, Lovonox (blood thinner for the clot)shot in belly done and in her chair ready to face the day.
At 9am the first port of call was Group therapy which is held in the school room just down the hall. In group therapy there were 3 children including Becca. First the kids had to make sure they knew the day, date, month, season etc and then they had to state what their goal was that they wished to achieve this week. Becca's goal was for her hands and arms to be strong enough to pick up and to use her Eeee PC.
At 9.30am was PT in the Gym. Today she had to get out of her chair and with the aid of a walker walk around 8 steps to another destination. She managed quite well although she did get a low oxygen related headache afterwards.
At 10am we then went back to the classroom for her school lesson. It is the first school lesson she has taken and so was more of a "getting to know" the teacher kind of thing. "Jane the Pain" (teachers nickname) got to know Rebecca and read some of the things out that Rehab graduates had written to stop new kids being scared of rehab when they first arrive.
At 10.30am it was time for speech in the speech therapist's room with Jenny and Ainsley the dog. Today's lesson was spent teaching Becca Ainsley's commands for the tricks he does and general memory retention.
At 11am it was then time for Occupational therapy. We went back to the gym for this and enjoyed a game of Blokus to help with Becca's hand coordination and hand and arm strength and reach.
At 11.30am it was time for Recreational therapy. There has been an ongoing game of Spongebob Monopoly going off for the past 4 or 5 days and so the game was set up yet again, this time in the gym versus in her room.
At 12 noon we finally went back to her room for a well earned rest. She had managed to stay out of her bed and awake for a full 3 hours!!
Just after getting into bed after a full morning she started to complain that her belly felt horrible again. This is the first time she has felt bad since Thursday after the early morning throwing up episode. This is disappointing as we felt the nausea was behind us after the placement of the tube from her belly into the intestine. She also complain of belly cramps too. As of 4pm she is still suffering from intermittent nausea feelings and bad belly cramps. Today she hasn't eaten anything at all by mouth, she says she doesn't want anything. Now this could be because she is feeling "iffy" but it could also be that the only things she is allowed to eat is Jello or broth and she doesn't like broth.
At 12.30pm she had to have a blood draw which takes quite a long time because the vampires take lots of blood. The blood draws only happen 3 times a week now which is a huge improvement over the 6 times a day on the other ward.
Around 1.30pm the respiratory person came around to do some pummeling on her chest to make sure that the lower part of her lungs which may have the pneumonia in them don't get any worse. They seem to have the antibiotics covered for that after upping her existing Flagil dose yesterday. Because of the "pneumonia" they also want to repeat the RSV test that kept failing earlier last week. This time they are just going to try and put a swab up her nose to see if they can get anything on that instead of the saline nasal rinses that were not being fruitful.
Again because of the "pneumonia" and because she is showing slight signs of breathlessness they are resuming Pulse oximitary readings. Luckily they are only doing spot checks every so often as it is still nigh on impossible to get a good "steady" reading from any of Becca's digits. The readings they do get range from the low 30% to the high 50%, though we have had two readings today of 72%, one on her thumb and one on her earlobe.
After another round of half hour therapy lessons (Speech where she had to remember what she had learnt that morning, PT - strenuous leg stretching exercises, OT - peg board hand manipulation and recreational therapy - Monopoly) this afternoon she had her massage therapy at 4pm and fell asleep in the middle of it.
At 5.15pm the respiratory therapist came around again to do a second bout of lung pummeling. Becca must quite like it as she just relaxed and lay there without complaining, in fact she hadn't come around from falling asleep in massage so she just carried on dozing.
Our Bic is a very busy little girl!!
Love
Mandy
Today Rebecca started the day with a flying leap!
Mandy arrived around 7.40am and Becca was already awake after a decent nights sleep with only very few disturbances.
By 9am Rebecca was dressed, washed, hair brushed, teeth brushed, Lovonox (blood thinner for the clot)shot in belly done and in her chair ready to face the day.
At 9am the first port of call was Group therapy which is held in the school room just down the hall. In group therapy there were 3 children including Becca. First the kids had to make sure they knew the day, date, month, season etc and then they had to state what their goal was that they wished to achieve this week. Becca's goal was for her hands and arms to be strong enough to pick up and to use her Eeee PC.
At 9.30am was PT in the Gym. Today she had to get out of her chair and with the aid of a walker walk around 8 steps to another destination. She managed quite well although she did get a low oxygen related headache afterwards.
At 10am we then went back to the classroom for her school lesson. It is the first school lesson she has taken and so was more of a "getting to know" the teacher kind of thing. "Jane the Pain" (teachers nickname) got to know Rebecca and read some of the things out that Rehab graduates had written to stop new kids being scared of rehab when they first arrive.
At 10.30am it was time for speech in the speech therapist's room with Jenny and Ainsley the dog. Today's lesson was spent teaching Becca Ainsley's commands for the tricks he does and general memory retention.
At 11am it was then time for Occupational therapy. We went back to the gym for this and enjoyed a game of Blokus to help with Becca's hand coordination and hand and arm strength and reach.
At 11.30am it was time for Recreational therapy. There has been an ongoing game of Spongebob Monopoly going off for the past 4 or 5 days and so the game was set up yet again, this time in the gym versus in her room.
At 12 noon we finally went back to her room for a well earned rest. She had managed to stay out of her bed and awake for a full 3 hours!!
Just after getting into bed after a full morning she started to complain that her belly felt horrible again. This is the first time she has felt bad since Thursday after the early morning throwing up episode. This is disappointing as we felt the nausea was behind us after the placement of the tube from her belly into the intestine. She also complain of belly cramps too. As of 4pm she is still suffering from intermittent nausea feelings and bad belly cramps. Today she hasn't eaten anything at all by mouth, she says she doesn't want anything. Now this could be because she is feeling "iffy" but it could also be that the only things she is allowed to eat is Jello or broth and she doesn't like broth.
At 12.30pm she had to have a blood draw which takes quite a long time because the vampires take lots of blood. The blood draws only happen 3 times a week now which is a huge improvement over the 6 times a day on the other ward.
Around 1.30pm the respiratory person came around to do some pummeling on her chest to make sure that the lower part of her lungs which may have the pneumonia in them don't get any worse. They seem to have the antibiotics covered for that after upping her existing Flagil dose yesterday. Because of the "pneumonia" they also want to repeat the RSV test that kept failing earlier last week. This time they are just going to try and put a swab up her nose to see if they can get anything on that instead of the saline nasal rinses that were not being fruitful.
Again because of the "pneumonia" and because she is showing slight signs of breathlessness they are resuming Pulse oximitary readings. Luckily they are only doing spot checks every so often as it is still nigh on impossible to get a good "steady" reading from any of Becca's digits. The readings they do get range from the low 30% to the high 50%, though we have had two readings today of 72%, one on her thumb and one on her earlobe.
After another round of half hour therapy lessons (Speech where she had to remember what she had learnt that morning, PT - strenuous leg stretching exercises, OT - peg board hand manipulation and recreational therapy - Monopoly) this afternoon she had her massage therapy at 4pm and fell asleep in the middle of it.
At 5.15pm the respiratory therapist came around again to do a second bout of lung pummeling. Becca must quite like it as she just relaxed and lay there without complaining, in fact she hadn't come around from falling asleep in massage so she just carried on dozing.
Our Bic is a very busy little girl!!
Love
Mandy
llurgy
DIS Veteran
- Joined
- Oct 2, 2008
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- 585
During the night, Bic was running high temperatures. She spiked a temp of 102.6 at 2am, then 101.2 then down to 99.8 at around 8am.
The doctor came in around 7.45am to listen to chest and didn't like that she couldn't hear as much air movement as yesterday. Bic was immediately sent for a static x-ray which was done at 8am. Bic's pneumonia is worse.
The neuro surgeon popped in to say that the infection markers in her blood were way down and that was really good as it meant the abscess in her brain should be showing signs of improvement. He was surprised that she had a pneumonia because he said as far as her blood work goes there is no infection so the pneumonia must be just be lacking an infection in it.
GI came round and when questioned about the throwing up yesterday, blamed it on the pneumonia. He said that as far as they were concerned the pedialite/formula shouldn't be making her sick as it wasn't going into her belly and that it should be carried on and built up in volume/nutrition as was their original goal.
There was discussion between the rehabilitation doctor and Yale regarding the treatment of Bic's pneumonia. It was decided to do the pummel vest and the assisted coughing
machine as the pneumonia needs to be addressed aggressively. We still have to be careful that she doesn't get a prolonged or harsh cough as that will be detrimental to her lungs.
Bic feels garbage today. She has done only minimal therapy on the side of the bed and only 10 minutes in her chair. She feels tired, listless, nauseous and has headache and dizziness. They are putting it down to her having pneumonia but we are not so sure seeing as she doesn't have the infection normally associated with this condition. Maybe the pneumonia is affecting her oxygen's and making them lower thus making her feel worse.....we don't know.
Because of the continued throwing up even though nothing at all is going in her belly they have finally given up on the tube feeding. As from this evening she is going TPN through her PICC line. We didn't want this and it is a sort of disappointment that her GI issues have gotten so bad. The doctor says that to fight the pneumonia she needs calories and she hasn't had any for so long, so TPN feeding it is.
When mentioned to the rehabilitation doctor that GI were saying that feeds shouldn't be giving her nausea and that tube feeding should carry on, she said that may be so, but she isn't getting any nutrition at the moment from the tube feeds and she needs it NOW. The only sure way to do that at this stage is to TPN it in. TPN stands for Total Parenteral Nutrition (feeding via IV).
The irony of the TPN is that we were told a few days ago that this method of feeding is only used as a last resort on patients because there was a risk of infection from it. As things are going, it would be our luck for Bic to get that as well - and all because GI have not properly addressed a problem that started about three weeks ago.
Becca had her respiratory treatment around 5pm which was cut a little bit short because she again finished up throwing up.
Because of spikes in temps over the last 24 hours and some neck pain the doctor ordered a CT scan with contrast without any delay, so off we went down to radiology yet again......Bic must truely be glowing by now. The results came back almost immediately so the doctor could go home with a clear conscience as they were all A-OK. The concern was that there was something going on in Bic's head (brain abscess).
We decided tonight that we were going to push things as far as the GI issues were concerned. The rehabilitation doctor has been doing her best but she seems to be having a constant battle with the GI unit in trying to get them to be pro-active in Bic'c care. So we were put in touch with the hospital nursing supervisor to try and act as an intermediary for us.
She contacted the GI department and told them that we were concerned about the care she was receiving and requested a consult with a senior member of staff to discuss what they were doing (going to do) to treat the ongoing stomach and digestive system issues. This is going to take place tomorrow. If there is a no show from GI or we are not satisfied with their response, it will be raised as a formal complaint against the department.
Love Mandy
The doctor came in around 7.45am to listen to chest and didn't like that she couldn't hear as much air movement as yesterday. Bic was immediately sent for a static x-ray which was done at 8am. Bic's pneumonia is worse.
The neuro surgeon popped in to say that the infection markers in her blood were way down and that was really good as it meant the abscess in her brain should be showing signs of improvement. He was surprised that she had a pneumonia because he said as far as her blood work goes there is no infection so the pneumonia must be just be lacking an infection in it.
GI came round and when questioned about the throwing up yesterday, blamed it on the pneumonia. He said that as far as they were concerned the pedialite/formula shouldn't be making her sick as it wasn't going into her belly and that it should be carried on and built up in volume/nutrition as was their original goal.
There was discussion between the rehabilitation doctor and Yale regarding the treatment of Bic's pneumonia. It was decided to do the pummel vest and the assisted coughing
machine as the pneumonia needs to be addressed aggressively. We still have to be careful that she doesn't get a prolonged or harsh cough as that will be detrimental to her lungs.
Bic feels garbage today. She has done only minimal therapy on the side of the bed and only 10 minutes in her chair. She feels tired, listless, nauseous and has headache and dizziness. They are putting it down to her having pneumonia but we are not so sure seeing as she doesn't have the infection normally associated with this condition. Maybe the pneumonia is affecting her oxygen's and making them lower thus making her feel worse.....we don't know.
Because of the continued throwing up even though nothing at all is going in her belly they have finally given up on the tube feeding. As from this evening she is going TPN through her PICC line. We didn't want this and it is a sort of disappointment that her GI issues have gotten so bad. The doctor says that to fight the pneumonia she needs calories and she hasn't had any for so long, so TPN feeding it is.
When mentioned to the rehabilitation doctor that GI were saying that feeds shouldn't be giving her nausea and that tube feeding should carry on, she said that may be so, but she isn't getting any nutrition at the moment from the tube feeds and she needs it NOW. The only sure way to do that at this stage is to TPN it in. TPN stands for Total Parenteral Nutrition (feeding via IV).
The irony of the TPN is that we were told a few days ago that this method of feeding is only used as a last resort on patients because there was a risk of infection from it. As things are going, it would be our luck for Bic to get that as well - and all because GI have not properly addressed a problem that started about three weeks ago.
Becca had her respiratory treatment around 5pm which was cut a little bit short because she again finished up throwing up.
Because of spikes in temps over the last 24 hours and some neck pain the doctor ordered a CT scan with contrast without any delay, so off we went down to radiology yet again......Bic must truely be glowing by now. The results came back almost immediately so the doctor could go home with a clear conscience as they were all A-OK. The concern was that there was something going on in Bic's head (brain abscess).
We decided tonight that we were going to push things as far as the GI issues were concerned. The rehabilitation doctor has been doing her best but she seems to be having a constant battle with the GI unit in trying to get them to be pro-active in Bic'c care. So we were put in touch with the hospital nursing supervisor to try and act as an intermediary for us.
She contacted the GI department and told them that we were concerned about the care she was receiving and requested a consult with a senior member of staff to discuss what they were doing (going to do) to treat the ongoing stomach and digestive system issues. This is going to take place tomorrow. If there is a no show from GI or we are not satisfied with their response, it will be raised as a formal complaint against the department.
Love Mandy
maroo
DIS Veteran
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- Aug 3, 2008
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Oh, Mandy..
I am so sorry!!! Please tell Becca we are praying for her and that I am sorry that she is feeling so bad!
I am so thankful that you guys are staying on those GI docs!!!!!! Hopefully a senior member of the team will help fix what is going on.
Hang in there!!!!
I am so sorry!!! Please tell Becca we are praying for her and that I am sorry that she is feeling so bad!
I am so thankful that you guys are staying on those GI docs!!!!!! Hopefully a senior member of the team will help fix what is going on.
Hang in there!!!!
dvc at last !
DVC Member 2006!
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I continue to think of you and pray.
Take care.
Take care.
eyor44
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Oh Mandy. Hopefully you will get some satisfaction tomorrow with the GI doctors.
Aly had pneumonia two years ago. She just suddenly spiked a fever that we could not get rid of. First visit to the doctor they thought she had something else and sent us home with a prescrip. Then she started throwing up and it was a weekend. I kept in contact with the doctor over the weekend and took her back on Monday. They did a series of test, one being chest xrays. We were sent home and I was on my way back to work when they called to say it was pneumonia and to bring her straight back. Before I reached the office they called again (cell phones are wonderful some times) and asked me to go by a pharmacy for an injection med that they would administer in the office. That kicked it out. I really wish I could remember what they gave her. Of course hers was caught in the beginning and she didn't have the issues Becca does. It was very worrisome for a few days not knowing what was going on.
Hopefully they will figure everything out for Becca soon. One small note, yay on the brain abscess getting better.
Aly had pneumonia two years ago. She just suddenly spiked a fever that we could not get rid of. First visit to the doctor they thought she had something else and sent us home with a prescrip. Then she started throwing up and it was a weekend. I kept in contact with the doctor over the weekend and took her back on Monday. They did a series of test, one being chest xrays. We were sent home and I was on my way back to work when they called to say it was pneumonia and to bring her straight back. Before I reached the office they called again (cell phones are wonderful some times) and asked me to go by a pharmacy for an injection med that they would administer in the office. That kicked it out. I really wish I could remember what they gave her. Of course hers was caught in the beginning and she didn't have the issues Becca does. It was very worrisome for a few days not knowing what was going on.
Hopefully they will figure everything out for Becca soon. One small note, yay on the brain abscess getting better.
TwistofLemon
<font color=green>I laugh til I can't breath<br><f
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Hopefully you'll have some positive action with the GI folks tomorrow. Of course Becca needs nutrition now. Sheesh! She needed it weeks ago. It takes a lot of energy(calories) to HEAL.
As always, God bless you guys!
As always, God bless you guys!
Oh Mandy...I'll just go directly to praying for strength...for Becca to have strength to fight this pneumonia and heal, for you and David to have the strength to continue your amazing advocacy for Becca, and for those doctors - yes, the GI ones too! - to have the strength and wisdom to listen, learn and work together.
I hope today is a better day.
Alison
I hope today is a better day.
Alison
jenb1023
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I am so sorry to read the latest update! I was really hoping Becca was on the mend. Hopefully, they can get the GI issues and pneumonia handled very soon. You guys are doing a great job staying on top of Becca's care - I am sure it is a lot to keep straight and handle.
Sending good thoughts, prayers and pixie dust!
Sending good thoughts, prayers and pixie dust!
Sending some more prayers.
So sorry to hear that Becca is still feeling ill. If it is not one thing it is another for her.
llurgy
DIS Veteran
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- Oct 2, 2008
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- 585
Yesterdays update, sorry, I forgot to post it last night.
This morning, Bic was in fairly good spirit, but it deteriorated as time went on. She did some therapy, but medicine was winning the battle of taking up her time. She had respiratory therapy (a vest that beats on her chest) and that made her feel unwell. She eventually threw up about 30 minutes after the vest treatment and it was only yellow bile and a bit of spit. Her belly area was cramping all the time up until this point, then it settled down a bit for the afternoon.
Bic did sit on the edge of the bed to play Sponge Bob Monopoly, but it was very uncomfortable for her and she frequently had to rest by laying down on David.
Bic had an x-ray of her belly and that appeared to show illeus (general slowdown of her digestive system).
When David and Mandy went for lunch, they ran into the GI Fellow who wanted to discuss our issues raised yesterday in the hallway by the cafeteria. He was told that it wasn't a particularly good venue and that a meeting on the ward was more appropriate. He said that he was going to be busy all afternoon and that it wouldn't happen until around 6pm.
Early evening, Bic had another respiratory therapy and again she felt like throwing up afterward. She had some anti-nausea medicine and that did appear to make the feeling go away.
Soon after 6pm, the GI Fellow came up to the ward to discuss Bic and the treatment she has been receiving. The discussion became confrontational and he went away to talk to the Attending. The Attending (Bic calls him the poo doctor) came in about half an hour later. It coincided with the Rehabilitation doctor also being present, so a good discussion ensued.
The GI doctor said that nausea and vomiting can be caused by a multitude of things. He said that after the body undergoes any major trauma, the body can respond in this way and also the intestines can slow down or stop. He believes that something has irritated the stomach - possibly all the medicines and salt water that have passed through the stomach earlier on in the treatment. He also said that ulcers or polyps are other possibilities, though less likely. Regarding her intestines, he thinks that they are still working okay.
A tentative plan of action is to book Bic into surgery and have a scope put down her throat into he stomach to see what is going on. He also thinks that it would be a good idea to have a stomach feeding/aspirating tube put in at the same time, whilst she is under general anesthetic. This would be a tube between the stomach and her belly, requiring just a small incision in her belly area. The only issue is that the tube would have to stay in for a minimum of 3 months because after a shorter period, it can't be removed without hurting her. The tube would be used to vent the stomach and also introduce feeds.
The nasal feeding tube would then be removed.
The GI doctor talked about introducing very small rates of feed directly into the small intestine (~1 ml/h) just to keep it working. They would start with pediolite before switching to formula feed.
He felt that is was of utmost importance to get nutrition back into Bic's body with some catch up also necessary.
The GI and Rehabilitation doctor went away to review her notes and begin formulating plans. They talked about doing the scope either Friday or Monday.
This morning, Bic was in fairly good spirit, but it deteriorated as time went on. She did some therapy, but medicine was winning the battle of taking up her time. She had respiratory therapy (a vest that beats on her chest) and that made her feel unwell. She eventually threw up about 30 minutes after the vest treatment and it was only yellow bile and a bit of spit. Her belly area was cramping all the time up until this point, then it settled down a bit for the afternoon.
Bic did sit on the edge of the bed to play Sponge Bob Monopoly, but it was very uncomfortable for her and she frequently had to rest by laying down on David.
Bic had an x-ray of her belly and that appeared to show illeus (general slowdown of her digestive system).
When David and Mandy went for lunch, they ran into the GI Fellow who wanted to discuss our issues raised yesterday in the hallway by the cafeteria. He was told that it wasn't a particularly good venue and that a meeting on the ward was more appropriate. He said that he was going to be busy all afternoon and that it wouldn't happen until around 6pm.
Early evening, Bic had another respiratory therapy and again she felt like throwing up afterward. She had some anti-nausea medicine and that did appear to make the feeling go away.
Soon after 6pm, the GI Fellow came up to the ward to discuss Bic and the treatment she has been receiving. The discussion became confrontational and he went away to talk to the Attending. The Attending (Bic calls him the poo doctor) came in about half an hour later. It coincided with the Rehabilitation doctor also being present, so a good discussion ensued.
The GI doctor said that nausea and vomiting can be caused by a multitude of things. He said that after the body undergoes any major trauma, the body can respond in this way and also the intestines can slow down or stop. He believes that something has irritated the stomach - possibly all the medicines and salt water that have passed through the stomach earlier on in the treatment. He also said that ulcers or polyps are other possibilities, though less likely. Regarding her intestines, he thinks that they are still working okay.
A tentative plan of action is to book Bic into surgery and have a scope put down her throat into he stomach to see what is going on. He also thinks that it would be a good idea to have a stomach feeding/aspirating tube put in at the same time, whilst she is under general anesthetic. This would be a tube between the stomach and her belly, requiring just a small incision in her belly area. The only issue is that the tube would have to stay in for a minimum of 3 months because after a shorter period, it can't be removed without hurting her. The tube would be used to vent the stomach and also introduce feeds.
The nasal feeding tube would then be removed.
The GI doctor talked about introducing very small rates of feed directly into the small intestine (~1 ml/h) just to keep it working. They would start with pediolite before switching to formula feed.
He felt that is was of utmost importance to get nutrition back into Bic's body with some catch up also necessary.
The GI and Rehabilitation doctor went away to review her notes and begin formulating plans. They talked about doing the scope either Friday or Monday.
Ooh, how did you keep your patience?!? I'd have remarked (frostily) to the fellow that it was interesting that there were so many acute GI cases in hospital, keeping him so "busy". Mark's GI knows that I pretty much avoid the fellows if I possibly can - I just figure we've given a great deal of time to medical teaching and there just comes a limit. OK, I actually told him outright...no more fellows/residents/interns/medical students. No more requests to get a history.
Is the reason for keeping the g-tube in at least 3 months just so the site can heal? Mark has a g-tube and at the time it was placed, it was,quite literally, a lifesaver. His recovery from the placement was very straightforward, though. It was something else to get used to, but we did, and having this as an option for nutrition was very, very important at the time.
God must have placed a steadying hand on your shoulder many times today. I know relationships with the medical team are very important, but...!#@!#!@#!@!.
As always, praying for strength and peace for you all. You are all remarkable!
Alison
Is the reason for keeping the g-tube in at least 3 months just so the site can heal? Mark has a g-tube and at the time it was placed, it was,quite literally, a lifesaver. His recovery from the placement was very straightforward, though. It was something else to get used to, but we did, and having this as an option for nutrition was very, very important at the time.
God must have placed a steadying hand on your shoulder many times today. I know relationships with the medical team are very important, but...!#@!#!@#!@!.
As always, praying for strength and peace for you all. You are all remarkable!
Alison
llurgy
DIS Veteran
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- Oct 2, 2008
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Day 49 - Ups & Downs (March 26, 2009)
Bic began the day feeling on top of the world. She excelled at everything she did including getting dressed, the group meeting, driving her electric wheelchair through an obstacle course etc. She was feeling really good about herself and her body (stomach) was co-operating. By 11am she was beginning to feel a little nauseous, but it was tolerable. After mid-day and by 12.45, she was feeling like trowing up. She was given anti-nausea medicine and that appeared to stop it from going any further. The afternoon was spent largely resting up. She did attempt some activities, but they were very much reduced.
At about 5.45pm, she began to feel very sick again and she did end up throwing up. After, she began to feel better fairly quickly and the rest of the evening she was in good spirit, but didn't really do anything physical.
The belly scope (and tube fitting if needed) has been booked for Monday.
In trying to aleiviate some of Bics stomach problems they have started to try and cut back on some of her oral meds. They are stopping the sodium medicine, sleeping medicine and stopping the nurontin. They are stopping sodium because it's replacement is included in TPN. The sleeping meds are to just given when needed and the Nurontin was going to be weaned but she is on such a small dose that they feel they can just discontinue it fullstop.
They doctors have also tried to consilidate all of her blood lab requirements and unless anything untoward comes up she will only have to have bloods drawn on Mondays.
Because she has had some stomach cramping and some feeling of nausea today they have decided to start the NJ feeding of Pedialite at 1cc per hour tomorrow instead of today as was planned.
They wish to give her gut some more rest time.
The Ophthalmologist came again today to dilate her eyes. She considers that her eyes have not changed since last time around two weeks ago. The blood vessels are still congested and tortuous but that may just be "Bic". They are going to give it another couple of weeks when hopefully she will be fit enough to go to clinic and have a full eye workup done.
It has been noted by one of the nurses that both times Becca had her penicillin today she started feeling nauseous almost straight away. To complicate this theory, her gall bladder medicine is given at the same time and both meds are given every six hours (12MN, 6am, 12N, 6pm), so we can't explain why she doesn't feel ill at midnight and with the early morning meds.
Another last minute thing has just come to our attention - GI want to do a swallow study looking at what happens to food when it passes into the stomach. We were told at 8pm they want to do it tomorrow morning, but they are unable to confirm it will happen or what time it will happen (go figure)!
Bic began the day feeling on top of the world. She excelled at everything she did including getting dressed, the group meeting, driving her electric wheelchair through an obstacle course etc. She was feeling really good about herself and her body (stomach) was co-operating. By 11am she was beginning to feel a little nauseous, but it was tolerable. After mid-day and by 12.45, she was feeling like trowing up. She was given anti-nausea medicine and that appeared to stop it from going any further. The afternoon was spent largely resting up. She did attempt some activities, but they were very much reduced.
At about 5.45pm, she began to feel very sick again and she did end up throwing up. After, she began to feel better fairly quickly and the rest of the evening she was in good spirit, but didn't really do anything physical.
The belly scope (and tube fitting if needed) has been booked for Monday.
In trying to aleiviate some of Bics stomach problems they have started to try and cut back on some of her oral meds. They are stopping the sodium medicine, sleeping medicine and stopping the nurontin. They are stopping sodium because it's replacement is included in TPN. The sleeping meds are to just given when needed and the Nurontin was going to be weaned but she is on such a small dose that they feel they can just discontinue it fullstop.
They doctors have also tried to consilidate all of her blood lab requirements and unless anything untoward comes up she will only have to have bloods drawn on Mondays.
Because she has had some stomach cramping and some feeling of nausea today they have decided to start the NJ feeding of Pedialite at 1cc per hour tomorrow instead of today as was planned.
They wish to give her gut some more rest time.
The Ophthalmologist came again today to dilate her eyes. She considers that her eyes have not changed since last time around two weeks ago. The blood vessels are still congested and tortuous but that may just be "Bic". They are going to give it another couple of weeks when hopefully she will be fit enough to go to clinic and have a full eye workup done.
It has been noted by one of the nurses that both times Becca had her penicillin today she started feeling nauseous almost straight away. To complicate this theory, her gall bladder medicine is given at the same time and both meds are given every six hours (12MN, 6am, 12N, 6pm), so we can't explain why she doesn't feel ill at midnight and with the early morning meds.
Another last minute thing has just come to our attention - GI want to do a swallow study looking at what happens to food when it passes into the stomach. We were told at 8pm they want to do it tomorrow morning, but they are unable to confirm it will happen or what time it will happen (go figure)!
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