Becca's Wish Trip........Update:September 2011.....Photo's....Sorta :)
- Thread starter llurgy
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eyor44
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Just visited the web site (haven't been in a couple days) and I love all the new pictures. How wonderful Becca looks. What is she painting? Looks like a Japanese (?) lamp? Can't wait to see a pic of the pillow she made. Love the new chair also.
llurgy
DIS Veteran
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- Oct 2, 2008
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Day 56 - 60 feet (April 2, 2009)
Becca awoke in a so-so mood this morning. She said she had had a restless night due to "output" issues
) Too much liquid and not enough absorbent material.
She has still suffered through belly cramps throughout the day those she had more in the morning hours than the afternoon.
In PT today she sat on the edge of the bed, got off the bed to a walking aid and walked about 5 to 6 feet before having to sit on a chair. After a small rest she walked another 5 to 6 feet to her wheelchair that was parked in the corridor. She was so good at it and felt really exhausted and had headache afterward but she still persevered to her next therapy.
In PT this afternoon she was feeling really crappy, she only just sat at the edge of the bed and was moaning throughout. With five minutes left to spare she made an heroic gesture and stood up for a full five minutes with only minimal support from the table. She was feeling so badly after doing this she nearly threw up the poor baby.
Around 2.15pm we went to outpatients clinic to have a dental xray of her mouth to try and find out what they are going to do about an AVM in her mouth. We think that it may be this AVM which allowed the infection into her bloodstream, thus seeding the brain abscess.
Becca was amazing this evening. We went down to grab some dinner in the cafeteria around 6.15pm but before we went we warned Becca that she hadn't done her bathroom visit for the day and that when we returned she would need to do it whether or not she needed to go. When we returned she was just bursting to tell us that she had done her bathroom visit but better still she had got there using the walker instead of the chair! The toilet is about 30 feet away from her bed and she used the walker both ways, a 60 feet round trip!!!! She said that she collapsed in bed when she got back to it.
Becca awoke in a so-so mood this morning. She said she had had a restless night due to "output" issues
) Too much liquid and not enough absorbent material.She has still suffered through belly cramps throughout the day those she had more in the morning hours than the afternoon.
In PT today she sat on the edge of the bed, got off the bed to a walking aid and walked about 5 to 6 feet before having to sit on a chair. After a small rest she walked another 5 to 6 feet to her wheelchair that was parked in the corridor. She was so good at it and felt really exhausted and had headache afterward but she still persevered to her next therapy.
In PT this afternoon she was feeling really crappy, she only just sat at the edge of the bed and was moaning throughout. With five minutes left to spare she made an heroic gesture and stood up for a full five minutes with only minimal support from the table. She was feeling so badly after doing this she nearly threw up the poor baby.
Around 2.15pm we went to outpatients clinic to have a dental xray of her mouth to try and find out what they are going to do about an AVM in her mouth. We think that it may be this AVM which allowed the infection into her bloodstream, thus seeding the brain abscess.
Becca was amazing this evening. We went down to grab some dinner in the cafeteria around 6.15pm but before we went we warned Becca that she hadn't done her bathroom visit for the day and that when we returned she would need to do it whether or not she needed to go. When we returned she was just bursting to tell us that she had done her bathroom visit but better still she had got there using the walker instead of the chair! The toilet is about 30 feet away from her bed and she used the walker both ways, a 60 feet round trip!!!! She said that she collapsed in bed when she got back to it.
llurgy
DIS Veteran
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- Oct 2, 2008
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- 585
Day 57 (April 3, 2009)
Came into Becca's room this morning at about 7.45am, she was still sleeping. Woke her up at 8am and almost immediately she started to feel nauseous - five minutes later she was throwing up.
Fortunately it seemed that this was a good thing as she said that it was good she had thrown up because she didn't want to go through the whole day feeling horrible and it was better to get it over and done with.
We then set to getting dressed, which Rebecca did herself. After getting dressed she decided she needed the bathroom, so off came her pants
She used the walker to get to the bathroom, used it in private and was tired she we took her back to bed in the chair. She did however mange to get back in bed from the chair with no assist at all.
She did her therapies all morning with only one major cramp around 11.15am til 11.25am.
At 11.30am she went down down to the schoolroom. Yesterday and today she did some academic tests. Yesterday was reading word lists and today it was reading comprehension. In both she scored at 7th grade level which is really good.
Therapies this afternoon consisted of Becca in bed with sitting on the edge of the bed and standing in between stomach cramps, the cramps seem to be lessening overall but they are still interfering with her therapies. The good news is that when she hasn't got cramps she does work as hard as she possibly can, she says she is taking advantage of feeling good.
In therapeutic recreation she is working away at her second monster pillow, she plans on doing all three but she may have trouble finding the third one as there don't seem to be any left of the monsters. She does enjoy the tying, she watches TV at night, tying her knots. She looks a bit like a little old woman with tying instead of crochet
Came into Becca's room this morning at about 7.45am, she was still sleeping. Woke her up at 8am and almost immediately she started to feel nauseous - five minutes later she was throwing up.
Fortunately it seemed that this was a good thing as she said that it was good she had thrown up because she didn't want to go through the whole day feeling horrible and it was better to get it over and done with.
We then set to getting dressed, which Rebecca did herself. After getting dressed she decided she needed the bathroom, so off came her pants
She used the walker to get to the bathroom, used it in private and was tired she we took her back to bed in the chair. She did however mange to get back in bed from the chair with no assist at all.She did her therapies all morning with only one major cramp around 11.15am til 11.25am.
At 11.30am she went down down to the schoolroom. Yesterday and today she did some academic tests. Yesterday was reading word lists and today it was reading comprehension. In both she scored at 7th grade level which is really good.
Therapies this afternoon consisted of Becca in bed with sitting on the edge of the bed and standing in between stomach cramps, the cramps seem to be lessening overall but they are still interfering with her therapies. The good news is that when she hasn't got cramps she does work as hard as she possibly can, she says she is taking advantage of feeling good.
In therapeutic recreation she is working away at her second monster pillow, she plans on doing all three but she may have trouble finding the third one as there don't seem to be any left of the monsters. She does enjoy the tying, she watches TV at night, tying her knots. She looks a bit like a little old woman with tying instead of crochet
Congrats, Becca!!!!!!! 
But I am glad she is scoring so well on her tests!! 
TwistofLemon
<font color=green>I laugh til I can't breath<br><f
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- Dec 8, 2006
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Becca, you know you're going to have to post pics of your pillow projects on the Disboutique board. You know how much they love pictures!!
David, I had to lol at your description of Becca looking like an old woman crocheting....I love to crochet!
It's great to hear all the good news
David, I had to lol at your description of Becca looking like an old woman crocheting....I love to crochet!
It's great to hear all the good news
llurgy
DIS Veteran
- Joined
- Oct 2, 2008
- Messages
- 585
Day 58 - Blah (April 4, 2009)
Bic was bright when David arrived first thing. She said that she had felt poorly during the night however and needed to have her tube feed switched off twice, so she didn't feel particularly well rested. Her feed rate had been all the way up to 37 ml/h, which is about half of what she needs if she was on tube feeds only.
For breakfast she has half a teaspoon of omelet and a piece of bacon. After spitting the bacon out, she proclaimed that she no longer liked bacon! The only other thing she had this morning was a quarter cup of ice!
She had plenty of time to get her teeth brushed and changed into her day clothes. The first session was PT at 10.00. She did about 15 minutes of leg exercises on the bed before getting into her chair and going to the gym. The act of getting into the chair made her stomach feel "swishy" and that never relented through PT. In the gym, Bic reluctantly stood by a table for 30 seconds before collapsing back in her chair. She complained of a headache that continued through Speech Therapy and into Occupational Therapy.
Bic was given Tylenol for her headache.
In OT, she was given some finger exercises in the form of therapeutic putty. She managed that okay, but she complained a lot for the whole half hour.
She was glad to get out of her chair and back into bed straight after at 11.30am. There she rested for the rest of the afternoon and evening. She didn't want to do anything after that. Bic had bright moments, but they were few and far between. She put off everything that was offered until later or tomorrow. Her complaint continued to be with her stomach that felt 'different' and unsettled.
By the end of the day, Bic's feed rate through the tube had been stepped back up to 37 ml/h.
The only other event of the day entailed giving Bic's hair a wash in bed. She wasn't happy about this, but had it done all the same. The waterproof pillows they use in hospital are causing Bic's head to sweat and her hair is getting very greasy. They have a no-rinse shampoo, which does clean the hair, but it seems to make it look worse. In all she did actually enjoy the hair washing, it relaxed her and made her feel good.
Bic was bright when David arrived first thing. She said that she had felt poorly during the night however and needed to have her tube feed switched off twice, so she didn't feel particularly well rested. Her feed rate had been all the way up to 37 ml/h, which is about half of what she needs if she was on tube feeds only.
For breakfast she has half a teaspoon of omelet and a piece of bacon. After spitting the bacon out, she proclaimed that she no longer liked bacon! The only other thing she had this morning was a quarter cup of ice!
She had plenty of time to get her teeth brushed and changed into her day clothes. The first session was PT at 10.00. She did about 15 minutes of leg exercises on the bed before getting into her chair and going to the gym. The act of getting into the chair made her stomach feel "swishy" and that never relented through PT. In the gym, Bic reluctantly stood by a table for 30 seconds before collapsing back in her chair. She complained of a headache that continued through Speech Therapy and into Occupational Therapy.
Bic was given Tylenol for her headache.
In OT, she was given some finger exercises in the form of therapeutic putty. She managed that okay, but she complained a lot for the whole half hour.
She was glad to get out of her chair and back into bed straight after at 11.30am. There she rested for the rest of the afternoon and evening. She didn't want to do anything after that. Bic had bright moments, but they were few and far between. She put off everything that was offered until later or tomorrow. Her complaint continued to be with her stomach that felt 'different' and unsettled.
By the end of the day, Bic's feed rate through the tube had been stepped back up to 37 ml/h.
The only other event of the day entailed giving Bic's hair a wash in bed. She wasn't happy about this, but had it done all the same. The waterproof pillows they use in hospital are causing Bic's head to sweat and her hair is getting very greasy. They have a no-rinse shampoo, which does clean the hair, but it seems to make it look worse. In all she did actually enjoy the hair washing, it relaxed her and made her feel good.
llurgy
DIS Veteran
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- Oct 2, 2008
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- 585
Last night, Bic had some sleeping medicine before we left. She was desperate to have a good nights sleep. This morning, she reported that she had a better night than the previous, but still not that great. She had some stomach cramps and her headache was still an issue.
Yesterdays offer of a bath was again put off until tomorrow. Bic managed to get dressed and she took the initiative to brush her own teeth after the 'equipment' was left on a table by her bed.
Bic had no interest in breakfast.
The attraction of going down to the gift shop later might be enough to encourage her into the wheelchair.
Early this morning when we spoke to the doctor, he said that Bic's antibiotics would all be stopped tomorrow and it would be replaced with a prophylactic oral antibiotic. He also reported that her belly sounded better than the other day, so maybe that is on the 'mend'. He also spoke of giving Bic a suppository to help 'clear her out', but as of 11am nothing has happened!
One of the PCA's brought Bic an ethnic head dress in to wear - Bic pronounced that she is now a nun!
Yesterdays offer of a bath was again put off until tomorrow. Bic managed to get dressed and she took the initiative to brush her own teeth after the 'equipment' was left on a table by her bed.
Bic had no interest in breakfast.
The attraction of going down to the gift shop later might be enough to encourage her into the wheelchair.
Early this morning when we spoke to the doctor, he said that Bic's antibiotics would all be stopped tomorrow and it would be replaced with a prophylactic oral antibiotic. He also reported that her belly sounded better than the other day, so maybe that is on the 'mend'. He also spoke of giving Bic a suppository to help 'clear her out', but as of 11am nothing has happened!
One of the PCA's brought Bic an ethnic head dress in to wear - Bic pronounced that she is now a nun!
llurgy
DIS Veteran
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- Oct 2, 2008
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- 585
Day 59 - continued (April 5, 2009)
Bic passed up on lunch - nil by mouth at all so far today!
The afternoon was much of the same - feeling unwell every time she moved, her stomach and intestines cramping up. Bic did get out of bed and sat on the sofa for a few minutes whilst her bed sheets were changed, but she complained about feeling unwell for most of the time she was there. She immediately got back into bed and vegetated for the remainder of the afternoon. Bic did manage two Teddy Grahams mid afternoon, but not even the ice is an attraction now.
After many distractions during the afternoon, Bic finally received her suppository. After the treatment, which incidentally she hated, her cramps appeared to go away and it was soon after this that she wanted a cup of ice to chomp on. The cramps did keep coming back during the evening as the suppository continued to do it's job.
You can't blame Bic for not being very happy. All she had to look forward was un-plugging her feed tube, a belly 'stick', a vest treatment, changing her PICC dressing and probably another night of discomfort and no sleep.
Bic's demeanor continued to be subdued through the rest of the evening having had a pretty poor weekend overall.
Bic passed up on lunch - nil by mouth at all so far today!
The afternoon was much of the same - feeling unwell every time she moved, her stomach and intestines cramping up. Bic did get out of bed and sat on the sofa for a few minutes whilst her bed sheets were changed, but she complained about feeling unwell for most of the time she was there. She immediately got back into bed and vegetated for the remainder of the afternoon. Bic did manage two Teddy Grahams mid afternoon, but not even the ice is an attraction now.
After many distractions during the afternoon, Bic finally received her suppository. After the treatment, which incidentally she hated, her cramps appeared to go away and it was soon after this that she wanted a cup of ice to chomp on. The cramps did keep coming back during the evening as the suppository continued to do it's job.
You can't blame Bic for not being very happy. All she had to look forward was un-plugging her feed tube, a belly 'stick', a vest treatment, changing her PICC dressing and probably another night of discomfort and no sleep.
Bic's demeanor continued to be subdued through the rest of the evening having had a pretty poor weekend overall.
MickeyReeds
Mouseketeer
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- Oct 25, 2007
- Messages
- 498
Just wanted to let you know I am still praying for you all! Hope you have a better week! Hang in there!
Becca, Mandy and David...just wanted to let you know that I continue to pray for you all...one of the very first things I do each day is to check to see if there any any Becca updates. It has been such a touch slog for all of you...and away from home to boot. Not sure if you have read our thread about Mark's Wish Trip and the facts leading in, but Mark and Douglas are our twin sons, now age 9, who were born >3 months early. Mark has cerebral palsy, and other related medical issues.
Sometimes I wondered if people remembered we were still in hospital - we were there 3 1/2 months before the boys made it home. It was lonely (don't tell anyone here we felt forgotten!!!). I wanted to mention that to you so that you know that you have ever so many friends, including us in "virtual land" who care and pray and hope to see improvements every day, little steps to take all of you closer to home.
thinking of you,
Alison
Sometimes I wondered if people remembered we were still in hospital - we were there 3 1/2 months before the boys made it home. It was lonely (don't tell anyone here we felt forgotten!!!). I wanted to mention that to you so that you know that you have ever so many friends, including us in "virtual land" who care and pray and hope to see improvements every day, little steps to take all of you closer to home.
thinking of you,
Alison
I'm sorry Becca is having some hard days and not eating well. I'll be praying that her stomach will mend an the tube feedings continue to be reduced so she gets her appetite back!
llurgy
DIS Veteran
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- Oct 2, 2008
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- 585
Thank you all for your continued support, I do know you are still all praying and reading, it is enough to know that, honestly 
If you read the updates you may all see differences in writing styles, this is because some days I write the updates and sometimes David does but it always says posted by David because we are logged on the site as administrator and that is David, so sometimes I am actually David
Today I came to the hospital and Becca was still asleep, I greeted her after around five minutes (I was bored) and she slowly came around to say Good Morning. I asked if she had slept well and she said she had slept well for which little time she was given but a lot of the night had been taken up with 4 lots of total bed linen changes. She is on so much liquid that her daiper cannot possibly hold the output. During the day it is not so bad as I can change her immediately but in the night, even if the call button is answered as she is peeing they just don't get there in time to stop the leak. She is being given a little less liquid today.
The drama of the blocked feeding tube continued into this morning. Last night the nurses tried numerous ways to try and get it unclogged, Water, Sprite, Coke.........Coke was left in it overnight to see if it's magical properties of getting oil off driveways would help with the stubborn clog but it was still clogged up this morning. They had one more thing to try and if that didnt work it would be down to intraventional radiology to have another tube placed. The "Draino" for NJ/NG tubes was brought in. It was put down the tube and left for one hour to do its job. After an hour and a lot of pushing and pulling sterile water the clog finally let go!!
All of Becca's IV antibiotics finished today!! All she has to take now is one antibiotic via her NJ tube (orally eventually), she will be on this for around a year or more, it is more of a prophylactic (preventative) that an antibiotic to treat current infection.
The stomach cramping/nausea still continues...... Not so bad today as she still hasn't had any feed going down her tube because of the clog issues earlier in the day, but cramps and nausea are still with us. She felt nauseous this morning and was given Zofran and again this afternoon at around 4pm when again she was given Zofran. Because all last week she wasn't really tolerating her formula, I put it to the doctors that maybe we could try the formula she was on previously which up until the Penicillin issues she seemed to tolerate quite well, so today she will go back to the Jevity at around 25ml per hour, they are going to raise it by 5ml every 4 hours until she reaches 40mls which is what she was at yesterday before the tube blocked up. The doctors are still saying that the stomach cramps and intermittent nausea due to her belly/gut trying to start its regular work again, so we shall sit tight for a while and play the waiting game in hopes that her belly and gut will sort itself out.
Becca HAS done most of her therapies today, headaches have played a big part in stopping her though......Saturday, Sunday and today she has complained of mild to severe headaches, she went through a couple of days worth of bad headaches last month though, so again we play the waiting game to see if they resolve themselves.
Love Mandy
If you read the updates you may all see differences in writing styles, this is because some days I write the updates and sometimes David does but it always says posted by David because we are logged on the site as administrator and that is David, so sometimes I am actually David
Today I came to the hospital and Becca was still asleep, I greeted her after around five minutes (I was bored) and she slowly came around to say Good Morning. I asked if she had slept well and she said she had slept well for which little time she was given but a lot of the night had been taken up with 4 lots of total bed linen changes. She is on so much liquid that her daiper cannot possibly hold the output. During the day it is not so bad as I can change her immediately but in the night, even if the call button is answered as she is peeing they just don't get there in time to stop the leak. She is being given a little less liquid today.
The drama of the blocked feeding tube continued into this morning. Last night the nurses tried numerous ways to try and get it unclogged, Water, Sprite, Coke.........Coke was left in it overnight to see if it's magical properties of getting oil off driveways would help with the stubborn clog but it was still clogged up this morning. They had one more thing to try and if that didnt work it would be down to intraventional radiology to have another tube placed. The "Draino" for NJ/NG tubes was brought in. It was put down the tube and left for one hour to do its job. After an hour and a lot of pushing and pulling sterile water the clog finally let go!!
All of Becca's IV antibiotics finished today!! All she has to take now is one antibiotic via her NJ tube (orally eventually), she will be on this for around a year or more, it is more of a prophylactic (preventative) that an antibiotic to treat current infection.
The stomach cramping/nausea still continues...... Not so bad today as she still hasn't had any feed going down her tube because of the clog issues earlier in the day, but cramps and nausea are still with us. She felt nauseous this morning and was given Zofran and again this afternoon at around 4pm when again she was given Zofran. Because all last week she wasn't really tolerating her formula, I put it to the doctors that maybe we could try the formula she was on previously which up until the Penicillin issues she seemed to tolerate quite well, so today she will go back to the Jevity at around 25ml per hour, they are going to raise it by 5ml every 4 hours until she reaches 40mls which is what she was at yesterday before the tube blocked up. The doctors are still saying that the stomach cramps and intermittent nausea due to her belly/gut trying to start its regular work again, so we shall sit tight for a while and play the waiting game in hopes that her belly and gut will sort itself out.
Becca HAS done most of her therapies today, headaches have played a big part in stopping her though......Saturday, Sunday and today she has complained of mild to severe headaches, she went through a couple of days worth of bad headaches last month though, so again we play the waiting game to see if they resolve themselves.
Love Mandy
As always, thank you for the update. Man, you guys are hanging in there with such fortitude!
I hope you'll understand that it was empathy and my own memories of our own frustrating but ridiculous rounds with unclogging Mark's g-tube. I remember pulling out all the stops one night, OJ, coke, nothing worked. The ridiculous part was that the clog itself was CAUSED by an overly careful doctor who didn't do some extra homework. Mark has been in the ER with a pneumonia that wouldn't budge, a high spiky fever (104-105) that wouldn't drop with anything etc etc. Yes, xrays proved this was pneumonia. Yes, his twin brother also had pneumonia, as also proven by xray. But NO, this doctor (the fellow) could not be convinced that this was really probably a VIRAL PNEUMONIA,not a baterial pneumonia. Gee, 2 pneumonias in the same family. Hmmmm...I'm thinking shared germs, aren't you? He insisted on using a wide-spectrum antibiotic right away, as soon as we got home.
Anyway, if you have a tube of any kind, and anyone suggests putting Biaxin down it, RUN, DO NOT WALK...and get the attending, get them to actually check it out and make sure it is suitable for tube use! The end result was that my sick boy (who couldn't manage meds by mouth at that point) had to go back to the hospital, visit the gtube nurse, get a new tube placed (at least this part was easy as it's a g-tube that gets changed every several months, I do them now). It was easily 12 hours of miserable fever etc before he got his antibiotics.
OK, enough vent. I hijacked your thread!
Take care,
Alison
I hope you'll understand that it was empathy and my own memories of our own frustrating but ridiculous rounds with unclogging Mark's g-tube. I remember pulling out all the stops one night, OJ, coke, nothing worked. The ridiculous part was that the clog itself was CAUSED by an overly careful doctor who didn't do some extra homework. Mark has been in the ER with a pneumonia that wouldn't budge, a high spiky fever (104-105) that wouldn't drop with anything etc etc. Yes, xrays proved this was pneumonia. Yes, his twin brother also had pneumonia, as also proven by xray. But NO, this doctor (the fellow) could not be convinced that this was really probably a VIRAL PNEUMONIA,not a baterial pneumonia. Gee, 2 pneumonias in the same family. Hmmmm...I'm thinking shared germs, aren't you? He insisted on using a wide-spectrum antibiotic right away, as soon as we got home.
Anyway, if you have a tube of any kind, and anyone suggests putting Biaxin down it, RUN, DO NOT WALK...and get the attending, get them to actually check it out and make sure it is suitable for tube use! The end result was that my sick boy (who couldn't manage meds by mouth at that point) had to go back to the hospital, visit the gtube nurse, get a new tube placed (at least this part was easy as it's a g-tube that gets changed every several months, I do them now). It was easily 12 hours of miserable fever etc before he got his antibiotics.
OK, enough vent. I hijacked your thread!
Take care,
Alison
llurgy
DIS Veteran
- Joined
- Oct 2, 2008
- Messages
- 585
Oh you poor things!!!
Stoopid doctor!!
Becca was so relieved this morning when her tube became unclogged, she is scared stiff of having it removed and replaced whether it be bedside NG or intraventional NJ, both ways make her beside herself with worry. Meanwhile we cross our fingers and hope the existing tube lasts the duration.
Becca had her massage at 4pm and fell asleep as usual. When she woke up she complained of a really bad headache so Tylenol was given through her NJ.....Because of all the clogging issues and only just managing to save the tube AND Tylenol being so thick they flushed with about 25ml of water after giving it........ one minute later and she is throwing up....again!!! Becca is so intolerant of volume in her gut at the moment it has to be seen to be believed.
The only good thing is that because it is a NJ tube the Tylenol stayed put
Stoopid doctor!!Becca was so relieved this morning when her tube became unclogged, she is scared stiff of having it removed and replaced whether it be bedside NG or intraventional NJ, both ways make her beside herself with worry. Meanwhile we cross our fingers and hope the existing tube lasts the duration.
Becca had her massage at 4pm and fell asleep as usual. When she woke up she complained of a really bad headache so Tylenol was given through her NJ.....Because of all the clogging issues and only just managing to save the tube AND Tylenol being so thick they flushed with about 25ml of water after giving it........ one minute later and she is throwing up....again!!! Becca is so intolerant of volume in her gut at the moment it has to be seen to be believed.
The only good thing is that because it is a NJ tube the Tylenol stayed put
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