Becca's Wish Trip........Update:September 2011.....Photo's....Sorta :)
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jenb1023
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Mandy - I am so sorry to hear about you being sick but am glad to hear about Becca getting to eat a little bit. I hope they get this stomach thing resolved soon and that the gall bladder medicine provides some relief. Hugs to you guys as always! Jen
llurgy
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Day 41 - Thins (March 18, 2009)
Mandy got up early this AM to go across to the hospital whilst David stayed sleeping for a while.
Becca's IV's for drawing orange juice have blown, so sometime today she is going to have to have another IV placed. The PICC can be used for meds but will no longer work for drawing orange juice. This afternoon the nurse came into Becca's room to ask her when would be the best time to replace the blown IV's. Becca requested that it be put off until tomorrow, this request was approved by the doctor and she had the Orange juice they needed to draw taken by a finger stick.
There was a follow up CT scan of her head this morning at 11am. This was done with contrast this time.
At 11.50am she was put through yet another RSV test with the tube and saline up the nose. Again I don't think they collected enough mucus from up her nose but that is probably because she doesn't have any mucus up her nose at all at this time, she is clear as a bell as far as cold symptoms are concerned.
Becca went for her swallow test this afternoon at 1pm. She was there with David for around 45 minutes. They came back up to the room with glum faces but that was just a tease, Rebecca had passed her test with flying colors and is now allowed to drink thins (real liquids without the thickener in them). Bring on the Coke, Sprite and Apple juice!
We had a group meeting at 2pm with all the rehab staff and the doctors, it was a "goal" meeting with what we hope to get out of re-hab in the coming weeks. Also addressed was her seemingly bad "near" vision and the bleeding AVM (malformed blood vessel) in her mouth. Hopefully both of these will be rectified in the coming weeks. Her vision is causing problems at the moment as she is not able to participate in a lot of the things that Occupational and recreational therapy wish to do with her.
After going nearly a full day with her feeds switched on and the new medicine for her Gall Bladder doing its job we thought Becca was on the mend. Unfortunately she spoilt it at around 4.30pm when she decided to throw up again. She had been complaining that her stomach felt bad throughout the day, especially when she was made to do her "sitting on the side of the bed" exercises. So again we are playing the waiting game to see how things go.
Speech, PT/OT and recreational Therapy still work with her 2 times per day in between all of the tests and other things.
Mandy got up early this AM to go across to the hospital whilst David stayed sleeping for a while.
Becca's IV's for drawing orange juice have blown, so sometime today she is going to have to have another IV placed. The PICC can be used for meds but will no longer work for drawing orange juice. This afternoon the nurse came into Becca's room to ask her when would be the best time to replace the blown IV's. Becca requested that it be put off until tomorrow, this request was approved by the doctor and she had the Orange juice they needed to draw taken by a finger stick.
There was a follow up CT scan of her head this morning at 11am. This was done with contrast this time.
At 11.50am she was put through yet another RSV test with the tube and saline up the nose. Again I don't think they collected enough mucus from up her nose but that is probably because she doesn't have any mucus up her nose at all at this time, she is clear as a bell as far as cold symptoms are concerned.
Becca went for her swallow test this afternoon at 1pm. She was there with David for around 45 minutes. They came back up to the room with glum faces but that was just a tease, Rebecca had passed her test with flying colors and is now allowed to drink thins (real liquids without the thickener in them). Bring on the Coke, Sprite and Apple juice!
We had a group meeting at 2pm with all the rehab staff and the doctors, it was a "goal" meeting with what we hope to get out of re-hab in the coming weeks. Also addressed was her seemingly bad "near" vision and the bleeding AVM (malformed blood vessel) in her mouth. Hopefully both of these will be rectified in the coming weeks. Her vision is causing problems at the moment as she is not able to participate in a lot of the things that Occupational and recreational therapy wish to do with her.
After going nearly a full day with her feeds switched on and the new medicine for her Gall Bladder doing its job we thought Becca was on the mend. Unfortunately she spoilt it at around 4.30pm when she decided to throw up again. She had been complaining that her stomach felt bad throughout the day, especially when she was made to do her "sitting on the side of the bed" exercises. So again we are playing the waiting game to see how things go.
Speech, PT/OT and recreational Therapy still work with her 2 times per day in between all of the tests and other things.
jenb1023
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I was all excited to read about the good swallow test and then I got to the upset stomach/throwing up part. Hopefully, it is just a matter of the gall bladder medicine taking its time to work. Hang in there and give that sweet girl a hug for me!
eyor44
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well.....yay! for the swallow test. 
Boo for still being sick. Some coke is what she needs, some good, regular, ice cold coke. You know, when it is so cold that there are little bits of ice in it. She's having withdrawls from having coke cola withheld.
I can totally sympathize. I am so addict that if I couldn't have it, I would be sick too.
Pathetic, I know. 
Really, I hope they figure it out soon and the meds start to do their magic.
Take care of yourself Mandy, and you to David.
Boo for still being sick. Some coke is what she needs, some good, regular, ice cold coke. You know, when it is so cold that there are little bits of ice in it. She's having withdrawls from having coke cola withheld.
I can totally sympathize. I am so addict that if I couldn't have it, I would be sick too.
Pathetic, I know. Really, I hope they figure it out soon and the meds start to do their magic.
Take care of yourself Mandy, and you to David.
llurgy
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Day 42 - Impeded (March 19, 2009)
Bic had a really good nights sleep, but that was ruined at 7.15 this morning when she threw up again. At 6am, her feeds were increased from 20 to 40 ml/h, so it's not clear if this is the problem. Afterward, she just wanted to sleep, but at least she didn't have stomach ache. They estimated that she had been fed about 200 ml overnight and that she had 'returned' 75 to 100 ml. What is important about this is it does indicate she is digesting some food.
Throughout the day her stomach has been feeling yucky, which has impeded her willingness to do anything involving sitting up. Despite this, she did do some sitting up exercises (under great protest) including laying on a bed that could be inclined all the way to a standing position. She didn't make it quite that far, but it allowed Bic to put weight on her legs for more than a few seconds.
Around 2.30pm isolation was finally lifted!!! Becca was getting totally fed up of everyone (except David and Mandy) having to gown, glove and mask up when they came in to see her. But she especially missed seeing Ainsley the dog as he wasn't allowed to come see her. There were still no results forthcoming from the RSV testing, even after 2 tests they still were not able to get any mucus from up her nose. I think after the 2nd failed test they just decided to give up and lift the isolation.
A GI doctor saw Bic and his recommendation was to eliminate the formula feed for a while. It would be replaced with pedialite to see if there was something in the feed that could be causing the issues.
The ward doctor also decided to do an x-ray of her belly and chest (she has an intermittent cough too).
Bic finished the day with a nice bath, which she really enjoyed.
Scrap the last sentence, Bic finally finished her day by going down for a chest and abdomen X-ray. We got back to her room at 9pm. She just has to have her nightly meds and she should be set until midnight.
Bic had a really good nights sleep, but that was ruined at 7.15 this morning when she threw up again. At 6am, her feeds were increased from 20 to 40 ml/h, so it's not clear if this is the problem. Afterward, she just wanted to sleep, but at least she didn't have stomach ache. They estimated that she had been fed about 200 ml overnight and that she had 'returned' 75 to 100 ml. What is important about this is it does indicate she is digesting some food.
Throughout the day her stomach has been feeling yucky, which has impeded her willingness to do anything involving sitting up. Despite this, she did do some sitting up exercises (under great protest) including laying on a bed that could be inclined all the way to a standing position. She didn't make it quite that far, but it allowed Bic to put weight on her legs for more than a few seconds.
Around 2.30pm isolation was finally lifted!!! Becca was getting totally fed up of everyone (except David and Mandy) having to gown, glove and mask up when they came in to see her. But she especially missed seeing Ainsley the dog as he wasn't allowed to come see her. There were still no results forthcoming from the RSV testing, even after 2 tests they still were not able to get any mucus from up her nose. I think after the 2nd failed test they just decided to give up and lift the isolation.
A GI doctor saw Bic and his recommendation was to eliminate the formula feed for a while. It would be replaced with pedialite to see if there was something in the feed that could be causing the issues.
The ward doctor also decided to do an x-ray of her belly and chest (she has an intermittent cough too).
Bic finished the day with a nice bath, which she really enjoyed.
Scrap the last sentence, Bic finally finished her day by going down for a chest and abdomen X-ray. We got back to her room at 9pm. She just has to have her nightly meds and she should be set until midnight.
llurgy
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Today I arrived around 7.15am to find that after holding her pedialite for the abdominal xray the previous evening Becca never actually got put on it because the xray showed that her bowel was indeed extended and inflamed and GI recommended nil by mouth until it was decided which course of action was going to be taken.
The re-hab doctor came around this morning to say there was basically 3 ways around this.
1) The put a NJ tube down into her gut
2) To go onto TPN (IV feeding)
3) Transfer her to the GI unit until whatever it is gets sorted.
As yet we don't really know what is happening, we do know that for the moment her gut has basically closed down and is not allowing anything from her stomach to be digested into the Duodenum.
On a good note.......Becca is feeling quite good today, she has only been feeling a bit "Icky" periodically and has actually done quite a lot of "GOOD" therapy today.
She got herself dressed today with minimal help and brushed her own teeth!!
Mandy
The re-hab doctor came around this morning to say there was basically 3 ways around this.
1) The put a NJ tube down into her gut
2) To go onto TPN (IV feeding)
3) Transfer her to the GI unit until whatever it is gets sorted.
As yet we don't really know what is happening, we do know that for the moment her gut has basically closed down and is not allowing anything from her stomach to be digested into the Duodenum.
On a good note.......Becca is feeling quite good today, she has only been feeling a bit "Icky" periodically and has actually done quite a lot of "GOOD" therapy today.
She got herself dressed today with minimal help and brushed her own teeth!!
Mandy
iu97alum
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If it's not one thing it's another. 
Glad to hear she's feeling better and getting up and around and OUT of the room! I remember when Emy was in isolation and it made ALL of us stir crazy. Sending our prayers and thoughts to getting this resolved ASAP!
Glad to hear she's feeling better and getting up and around and OUT of the room! I remember when Emy was in isolation and it made ALL of us stir crazy. Sending our prayers and thoughts to getting this resolved ASAP!
maroo
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Today I arrived around 7.15am to find that after holding her pedialite for the abdominal xray the previous evening Becca never actually got put on it because the xray showed that her bowel was indeed extended and inflamed and GI recommended nil by mouth until it was decided which course of action was going to be taken.
The re-hab doctor came around this morning to say there was basically 3 ways around this.
1) The put a NJ tube down into her gut
2) To go onto TPN (IV feeding)
3) Transfer her to the GI unit until whatever it is gets sorted.
As yet we don't really know what is happening, we do know that for the moment her gut has basically closed down and is not allowing anything from her stomach to be digested into the Duodenum.
On a good note.......Becca is feeling quite good today, she has only been feeling a bit "Icky" periodically and has actually done quite a lot of "GOOD" therapy today.
She got herself dressed today with minimal help and brushed her own teeth!!
Mandy
Mandy,
I appreciate the daily updates so much! It really keeps my head wrapped around what is going on with Becca and helps remind me to pray and what to pray for her!
Fabulous that she got dressed with minimal help and brushed her own teeth! That is good progress!
I hope you guys are able to get her situated on the GI stuff. I hope they figure it out soon!
Hang in there! We are praying!
llurgy
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Right, today part two......
Around 10am our doctor came around and said that the plan was to move her existing NG tube down into her Duodenum and it become an NJ tube.
Apparently over the past day (shown on last nights xray) the stomach had actually propelled it down past the sphincter in-between the stomach and duodenum all by itself and hopefully the docs would be able to just push it on its continued journey.
There would have to be an xray afterward to make sure that it was placed correctly but this way was better than putting her through having the NG ripped out and a new NJ placed under XRay and probably sedation (They don't like to sedate Becca because of her low Oxygen's).
GI did their rounds and repeated what our re-hab doctor had just said.
So around 11.30am....the tube was moved down and we were told that we were just going to be waiting for XRay to double check placement and then feeds could start.
At 3.30pm this afternoon I let loose! It seems that GI had failed to mention to Me or the staff on Re-Hab that the moving the tube procedure had to be repeated another two times at least with at least 6 hour intervals in-between!
We are waiting for xray and xray wasn't happening until tomorrow after the 3rd tube migration.
I didn't go off at the re-hab staff, I went off at the GI doctors but the only trouble was that I had to do this through the re-hab docs, which I felt bad about but I felt I had to say something.
Anyways, since the second tube movage she has been able to take in a liquid diet by mouth so she has just had some broth and some Jello. Not a lot, but enough to satisfy Becca
Apparently, the reason for the gradual tube moves is to allow the duodenum itself to do a lot of the travel work by its own contractions. This I can understand and if this had been relayed in the first place I wouldnt have been annoyed at all.
I hate non- communicative doctors!! Especially those that are all smiles and information to your face and then go and do something totally different 5 minutes later.
Becca has been well all day and has done great in all of her therapies. Isn't it surprising what happens when you don't feel nauseous all of the time?
Around 10am our doctor came around and said that the plan was to move her existing NG tube down into her Duodenum and it become an NJ tube.
Apparently over the past day (shown on last nights xray) the stomach had actually propelled it down past the sphincter in-between the stomach and duodenum all by itself and hopefully the docs would be able to just push it on its continued journey.
There would have to be an xray afterward to make sure that it was placed correctly but this way was better than putting her through having the NG ripped out and a new NJ placed under XRay and probably sedation (They don't like to sedate Becca because of her low Oxygen's).
GI did their rounds and repeated what our re-hab doctor had just said.
So around 11.30am....the tube was moved down and we were told that we were just going to be waiting for XRay to double check placement and then feeds could start.
At 3.30pm this afternoon I let loose! It seems that GI had failed to mention to Me or the staff on Re-Hab that the moving the tube procedure had to be repeated another two times at least with at least 6 hour intervals in-between!
We are waiting for xray and xray wasn't happening until tomorrow after the 3rd tube migration.
I didn't go off at the re-hab staff, I went off at the GI doctors but the only trouble was that I had to do this through the re-hab docs, which I felt bad about but I felt I had to say something.
Anyways, since the second tube movage she has been able to take in a liquid diet by mouth so she has just had some broth and some Jello. Not a lot, but enough to satisfy Becca
Apparently, the reason for the gradual tube moves is to allow the duodenum itself to do a lot of the travel work by its own contractions. This I can understand and if this had been relayed in the first place I wouldnt have been annoyed at all.
I hate non- communicative doctors!! Especially those that are all smiles and information to your face and then go and do something totally different 5 minutes later.
Becca has been well all day and has done great in all of her therapies. Isn't it surprising what happens when you don't feel nauseous all of the time?
and prayers that these GI issues get resolved permanently.TwistofLemon
<font color=green>I laugh til I can't breath<br><f
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Becca, Mandy and David,
I really can not even imagine how you have any shred of patience left. Where do you find your strength?
Great news that Becca has felt better today! I hope you get better and better every single day!
I have not forgotten about the pillow cases. I got a new batch of fabrics, and am really having the best time planning which colors to use, and which will be the most cheerful/ restful!
Not sure how something can be both at the same time, but that's the way my mind works! 
Hopefully there will be a package sent to Ohio next week. Is it best to send things to Mickey D's house? Or would it be better sent to the rehab unit? Please send me a message with the best address.
I've noticed the number of messages to this thread has slowed down a bit. I hope you know that you are still in tons of prayers. It would be very hard for anyone who's read your thread to forget that little ball of sunshine we now know as Bic.
God Bless, Best Wishes, Good Luck, and Stay Strong!
I really can not even imagine how you have any shred of patience left. Where do you find your strength?
Great news that Becca has felt better today! I hope you get better and better every single day!
I have not forgotten about the pillow cases. I got a new batch of fabrics, and am really having the best time planning which colors to use, and which will be the most cheerful/ restful!
Not sure how something can be both at the same time, but that's the way my mind works! Hopefully there will be a package sent to Ohio next week. Is it best to send things to Mickey D's house? Or would it be better sent to the rehab unit? Please send me a message with the best address.
I've noticed the number of messages to this thread has slowed down a bit. I hope you know that you are still in tons of prayers. It would be very hard for anyone who's read your thread to forget that little ball of sunshine we now know as Bic.
God Bless, Best Wishes, Good Luck, and Stay Strong!
rodeo65
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I've noticed the number of messages to this thread has slowed down a bit. I hope you know that you are still in tons of prayers. It would be very hard for anyone who's read your thread to forget that little ball of sunshine we now know as Bic.
Very true. I've only posted once but have lurked all along. I check Becca's thread daily, usually twice - once when I get on the board and once before leaving. As always...thinking good wishes and prayers for Becca!
Very true. I've only posted once but have lurked all along. I check Becca's thread daily, usually twice - once when I get on the board and once before leaving. As always...thinking good wishes and prayers for Becca!
eyor44
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Yes, we are all still here. I also check this thread a couple of times a day and view the web site daily to see if there are any new pics.
You go Becca! We are all here and praying for you.
Give those doctors heck Mandy. They need to be reminded occasionally that they need to communicate.
You go Becca! We are all here and praying for you. Give those doctors heck Mandy. They need to be reminded occasionally that they need to communicate.
llurgy
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Hi everybody,
Thanks for the reassurances that we are still being prayed for......We really didn't need that reassurance though as by now we do realize what a lot of warm and generous people there are avidly reading about our Becca's journey - we don't need proof of it
Bic continues to do fine today, again in very good spirits even though she has had to go through another 2 times of "threading the tube" down. She has had an X-Ray and thankfully the tube is in a good place so they can finally start her feeds again. They will start her on Pedialite, 20ml's per hour continuously and upping the volume gradually. Depending on how she tolerates her feeds the plan is to eventually go onto half Pedialite and half formula and then switch to total formula. We have no idea of the time-frame
In the meantime Bic is enjoying her little sips of sprite/coke/water or whatever drink she fancies, she is also enjoying her little nibbles of Jello.
They are going to have trouble with Bic when they start trying to count what she eats calories-wise for real eating. She eats so very little and gets full so very quickly that I fear they make keep her here just because she wont eat enough! On a good day she doesnt even get halfway through a kids meal at a restaurant and from past experience when she has been sick before I think a mouse eats more than she does.
Becca again got herself dressed today with minimal help. As she is laid in bed and still diapered she does need help maneuvering her waistband over the diaper whilst lifting her bottom off the bed at the same time. She sat up to put her t-shirt on and put her socks on. She then did a really good job of brushing her teeth. She was proud to show her daddy all these things as he hadn't been there when she did it yesterday morning.
In Physical therapy today she took another whirl on the tilt table. They strapped her on it and started to tilt it upright. They kept stopping it and she kept saying "more", she made them carry on until she was totally upright. She was so proud of herself!! They were quite amazed that she had wanted to go so upright so very early on in the tilt table therapy (i think it usually takes a good weeks worth before total upright-ness), but Bic liked it She finds the tilt table fun and after ten minutes of tossing a ball back and forth between David and I they told her it was time to go back down.
Now she was not happy, she wanted to carry on Again the therapists were really freaked as usually kids cant wait to get off, they never have anyone asking for more time on it
No more "bad" things happening today, we are going for a trip to the gift shop today so she is looking forward to that.
Love
Mandy
Thanks for the reassurances that we are still being prayed for......We really didn't need that reassurance though as by now we do realize what a lot of warm and generous people there are avidly reading about our Becca's journey - we don't need proof of it
Bic continues to do fine today, again in very good spirits even though she has had to go through another 2 times of "threading the tube" down. She has had an X-Ray and thankfully the tube is in a good place so they can finally start her feeds again. They will start her on Pedialite, 20ml's per hour continuously and upping the volume gradually. Depending on how she tolerates her feeds the plan is to eventually go onto half Pedialite and half formula and then switch to total formula. We have no idea of the time-frame
In the meantime Bic is enjoying her little sips of sprite/coke/water or whatever drink she fancies, she is also enjoying her little nibbles of Jello.
They are going to have trouble with Bic when they start trying to count what she eats calories-wise for real eating. She eats so very little and gets full so very quickly that I fear they make keep her here just because she wont eat enough! On a good day she doesnt even get halfway through a kids meal at a restaurant and from past experience when she has been sick before I think a mouse eats more than she does.
Becca again got herself dressed today with minimal help. As she is laid in bed and still diapered she does need help maneuvering her waistband over the diaper whilst lifting her bottom off the bed at the same time. She sat up to put her t-shirt on and put her socks on. She then did a really good job of brushing her teeth. She was proud to show her daddy all these things as he hadn't been there when she did it yesterday morning.
In Physical therapy today she took another whirl on the tilt table. They strapped her on it and started to tilt it upright. They kept stopping it and she kept saying "more", she made them carry on until she was totally upright. She was so proud of herself!! They were quite amazed that she had wanted to go so upright so very early on in the tilt table therapy (i think it usually takes a good weeks worth before total upright-ness), but Bic liked it
She finds the tilt table fun and after ten minutes of tossing a ball back and forth between David and I they told her it was time to go back down.Now she was not happy, she wanted to carry on
Again the therapists were really freaked as usually kids cant wait to get off, they never have anyone asking for more time on it No more "bad" things happening today, we are going for a trip to the gift shop today so she is looking forward to that.
Love
Mandy
llurgy
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Becca, Mandy and David,
I really can not even imagine how you have any shred of patience left. Where do you find your strength?
Great news that Becca has felt better today! I hope you get better and better every single day!
I have not forgotten about the pillow cases. I got a new batch of fabrics, and am really having the best time planning which colors to use, and which will be the most cheerful/ restful!
Hopefully there will be a package sent to Ohio next week. Is it best to send things to Mickey D's house? Or would it be better sent to the rehab unit? Please send me a message with the best address.
I've noticed the number of messages to this thread has slowed down a bit. I hope you know that you are still in tons of prayers. It would be very hard for anyone who's read your thread to forget that little ball of sunshine we now know as Bic.
God Bless, Best Wishes, Good Luck, and Stay Strong!
The pillowcases would probably best being sent to the Maccie-D house again, they seem a tad more organized than the hospital. There is no rush though, we are in here for quite some time yet
All her pillowcases are again in the wash because of the throw-up week and she was quite dismayed to find that tonight she had to sleep on a hospital pillowcase???? Spoilt??
Of course cheerful and restful go together......It equals "Happy Dreaming Sleep"
eyor44
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Everything sounds great. Getting dressed, brushing teeth, going shopping. Yep, that girl is on her way.
I'm not surprised she liked the tilt table, if it is what I am thinking. Aly liked the table they put on her for a CT scan. She asked to go back and forth on it a couple more times. Said it was almost as good as a ride at Disney.
(Psst: it's the coke. Perk you right up it will.
)
I'm not surprised she liked the tilt table, if it is what I am thinking. Aly liked the table they put on her for a CT scan. She asked to go back and forth on it a couple more times. Said it was almost as good as a ride at Disney.
(Psst: it's the coke. Perk you right up it will.
)Mandy: Wonderful to hear of Becca's continued progress! I'm glad the NJ tube is now in place and her tummy is settling down. I am sure she's enjoying the sips and bits of yummy stuff she is now able to have.
We're praying that she continues to improve - and I'll throw in a prayer that those docs learn a bit more about family centred care (way to go giving 'em a pice of your mind!)
Alison
We're praying that she continues to improve - and I'll throw in a prayer that those docs learn a bit more about family centred care (way to go giving 'em a pice of your mind!)
Alison
llurgy
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Day 45 - Aspiration (March 22, 2009)
During the doctor's rounds this morning, it was announced that the oximeter could finally go. They accepted that the readings it was giving were unreliable and that nobody was taking any notice of them anyway, so it could go. They rationalized it for themselves by saying that when we go home, we are unlikely to be watching her oxygens closely and so this was a step in that direction.
The doctors had also noticed an abnormality on one of Bic's recent x-rays and they wanted to investigate further. On the last abdominal x-ray, they noticed that there was something at the bottom of her lungs. We went for an x-ray early afternoon and were visited by the pulmonary doctors a little later. They said that the shadow was consistent with an aspiration and from what we could work out with timings, it had happened when she threw up on March 19 in the morning. David recalls coming in and seeing the PCA trying to catch everything using a large wash bowl with Bic on her side (not sat up in bed). It didn't allow Bic to have her head low enough to completely empty her mouth and we think she aspirated on vomit then. Unfortunately, the doctors want to be super cautious and are considering further restricting what Bic can eat. They have already nearly doubled the dose of antibiotics to address this situation (Flagil) and want to do percussion on Bic's chest to help clear it.
Bic hasn't been as active as she was on Friday and Yesterday. We did get her out of bed into her chair and onto the roof garden again. It was lovely and warm today like it was yesterday and probably got close to one hour outside (interrupted by a request to return to the ward to see the pulmonary doctors).
We think there could be something in the aspiration 'theory' because she does seem to have been more short of breath when she does things and just hasn't been on top of the world. In the past when she has vomited, she has had the occasional cough for up to an hour, but this time she has been coughing on and off since Thursday morning.
Bic's food feed rate has been increased all the way to 60 ml/h on pediolite. This afternoon, they turned it down to 20 ml/h and switched to a mixture of pediolite and formula (3:1). So far with the NJ tube, Bic hasn't had any further signs of nausea and her stomach appears to be settled.
One problem that has emerged is that with the constant input of liquid through tubes (IV and NJ tube) into her body is that she continues to pee through the night. Bic complained of frequent disturbances caused by over-flowing diapers. She said the staff had to disturb her several times to change the sheets, which isn't good when she expected to wake up fully refreshed.
There are many aspects to Bic's recovery that are now becoming catch 22 issues!
During the doctor's rounds this morning, it was announced that the oximeter could finally go. They accepted that the readings it was giving were unreliable and that nobody was taking any notice of them anyway, so it could go. They rationalized it for themselves by saying that when we go home, we are unlikely to be watching her oxygens closely and so this was a step in that direction.
The doctors had also noticed an abnormality on one of Bic's recent x-rays and they wanted to investigate further. On the last abdominal x-ray, they noticed that there was something at the bottom of her lungs. We went for an x-ray early afternoon and were visited by the pulmonary doctors a little later. They said that the shadow was consistent with an aspiration and from what we could work out with timings, it had happened when she threw up on March 19 in the morning. David recalls coming in and seeing the PCA trying to catch everything using a large wash bowl with Bic on her side (not sat up in bed). It didn't allow Bic to have her head low enough to completely empty her mouth and we think she aspirated on vomit then. Unfortunately, the doctors want to be super cautious and are considering further restricting what Bic can eat. They have already nearly doubled the dose of antibiotics to address this situation (Flagil) and want to do percussion on Bic's chest to help clear it.
Bic hasn't been as active as she was on Friday and Yesterday. We did get her out of bed into her chair and onto the roof garden again. It was lovely and warm today like it was yesterday and probably got close to one hour outside (interrupted by a request to return to the ward to see the pulmonary doctors).
We think there could be something in the aspiration 'theory' because she does seem to have been more short of breath when she does things and just hasn't been on top of the world. In the past when she has vomited, she has had the occasional cough for up to an hour, but this time she has been coughing on and off since Thursday morning.
Bic's food feed rate has been increased all the way to 60 ml/h on pediolite. This afternoon, they turned it down to 20 ml/h and switched to a mixture of pediolite and formula (3:1). So far with the NJ tube, Bic hasn't had any further signs of nausea and her stomach appears to be settled.
One problem that has emerged is that with the constant input of liquid through tubes (IV and NJ tube) into her body is that she continues to pee through the night. Bic complained of frequent disturbances caused by over-flowing diapers. She said the staff had to disturb her several times to change the sheets, which isn't good when she expected to wake up fully refreshed.
There are many aspects to Bic's recovery that are now becoming catch 22 issues!
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