Kaitlyn is in the hospital

R

ReneeP

New member
Okay, I am going to try really hard here to get this one to go through. Every time I type a message and click to reply, I lose my internet connection and the message I was trying to send.

Thanks again for all the responses. We have worked out the snack issue and she now has a stockpile in her bedside drawer and is getting more each day.

As far as friends or family, I have none around here at all. My family is all 1500 miles away (except my kids and husband and they are 5 hours away). So, it's just Kaitlyn and myself.

Kaitlyn is in Christus Santa Rosa Hospital in San Antonio, TX. Room 9235.

Oh, I had to share what happened this morning... I was so proud of Kailtyn... I left the room to go get breakfast downstairs. When I came back in the room I overheard Kaitlyn and a nurse talking. The nurse kept telling Kaitlyn it was fine and that she needed to take them. Kaitlyn said "can you please just double check?"... so I walked in and asked what was going on. Apparently the nurse was trying to give her the wrong enzymes. Kailtyn takes Creon and the nurse was trying to give her Ultrase. Kaitlyn told her they were wrong but the nurse kept saying, no, they are fine... just a different brand. At least until I walked in. I told her no, we don't want Ultrase. There is no reason for her to switch enzymes when we've been getting Creon the whole time we've been here. So she went and got the right ones finally. But I was very proud of Kaitlyn for standing up to the nurse. I mean, the enzymes wouldn't have hurt her, but what if it were something else? I am glad to know that she is willing to stand up when she knows something is wrong....

Thanks again for all the well wishes....

Keep the prayers coming our way. Today has been very rough for her. The newness and all the attention has worn off and the IV's and stuff have hit home. She has cried quite a bit today...
 
R

ReneeP

New member
Okay, I am going to try really hard here to get this one to go through. Every time I type a message and click to reply, I lose my internet connection and the message I was trying to send.

Thanks again for all the responses. We have worked out the snack issue and she now has a stockpile in her bedside drawer and is getting more each day.

As far as friends or family, I have none around here at all. My family is all 1500 miles away (except my kids and husband and they are 5 hours away). So, it's just Kaitlyn and myself.

Kaitlyn is in Christus Santa Rosa Hospital in San Antonio, TX. Room 9235.

Oh, I had to share what happened this morning... I was so proud of Kailtyn... I left the room to go get breakfast downstairs. When I came back in the room I overheard Kaitlyn and a nurse talking. The nurse kept telling Kaitlyn it was fine and that she needed to take them. Kaitlyn said "can you please just double check?"... so I walked in and asked what was going on. Apparently the nurse was trying to give her the wrong enzymes. Kailtyn takes Creon and the nurse was trying to give her Ultrase. Kaitlyn told her they were wrong but the nurse kept saying, no, they are fine... just a different brand. At least until I walked in. I told her no, we don't want Ultrase. There is no reason for her to switch enzymes when we've been getting Creon the whole time we've been here. So she went and got the right ones finally. But I was very proud of Kaitlyn for standing up to the nurse. I mean, the enzymes wouldn't have hurt her, but what if it were something else? I am glad to know that she is willing to stand up when she knows something is wrong....

Thanks again for all the well wishes....

Keep the prayers coming our way. Today has been very rough for her. The newness and all the attention has worn off and the IV's and stuff have hit home. She has cried quite a bit today...
 
M

mum2kj

New member
Thats great that she stood up to the nurse. My daughter does the same thing and I was proud of her the first time she did it<img src="i/expressions/face-icon-small-smile.gif" border="0">

Way to go Kaitlyn<img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope she starts to feel better soon <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

mum2kj

New member
Thats great that she stood up to the nurse. My daughter does the same thing and I was proud of her the first time she did it<img src="i/expressions/face-icon-small-smile.gif" border="0">

Way to go Kaitlyn<img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope she starts to feel better soon <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

mum2kj

New member
Thats great that she stood up to the nurse. My daughter does the same thing and I was proud of her the first time she did it<img src="i/expressions/face-icon-small-smile.gif" border="0">

Way to go Kaitlyn<img src="i/expressions/face-icon-small-smile.gif" border="0">

I hope she starts to feel better soon <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
U

usedtobeinca

Guest
Renee,
I hope you're out of the hospital by now - but if not we had some ideas on hospital survival. I hope your illness has subsided anyway. The grocery store idea is great - that's how we survived the 7 weeks our son was admitted over the summer. Usually there are drawers in the room for non-preishables and a fridge in the "family" kitchen in your ward. Mark the fridge items well as they can easily disappear (it's a bummer - but it happened).

Give yourself a breather and get out of the room (and the hospital if possible) at least once a day (the grocery store idea will help to get you out too). Our care center is also a part of a medical school, so we took lots of walks around campus to soothe our souls. Your mind and body will thank you. Also, allow yourself a treat here and there - don't spend a lot of $$ (a cup of coffee or a mini peppermint pattie fron the concession was mine).

Not super creative, but these worked for us. Take care and stay strong.
 
U

usedtobeinca

Guest
Renee,
I hope you're out of the hospital by now - but if not we had some ideas on hospital survival. I hope your illness has subsided anyway. The grocery store idea is great - that's how we survived the 7 weeks our son was admitted over the summer. Usually there are drawers in the room for non-preishables and a fridge in the "family" kitchen in your ward. Mark the fridge items well as they can easily disappear (it's a bummer - but it happened).

Give yourself a breather and get out of the room (and the hospital if possible) at least once a day (the grocery store idea will help to get you out too). Our care center is also a part of a medical school, so we took lots of walks around campus to soothe our souls. Your mind and body will thank you. Also, allow yourself a treat here and there - don't spend a lot of $$ (a cup of coffee or a mini peppermint pattie fron the concession was mine).

Not super creative, but these worked for us. Take care and stay strong.
 
U

usedtobeinca

Guest
Renee,
I hope you're out of the hospital by now - but if not we had some ideas on hospital survival. I hope your illness has subsided anyway. The grocery store idea is great - that's how we survived the 7 weeks our son was admitted over the summer. Usually there are drawers in the room for non-preishables and a fridge in the "family" kitchen in your ward. Mark the fridge items well as they can easily disappear (it's a bummer - but it happened).

Give yourself a breather and get out of the room (and the hospital if possible) at least once a day (the grocery store idea will help to get you out too). Our care center is also a part of a medical school, so we took lots of walks around campus to soothe our souls. Your mind and body will thank you. Also, allow yourself a treat here and there - don't spend a lot of $$ (a cup of coffee or a mini peppermint pattie fron the concession was mine).

Not super creative, but these worked for us. Take care and stay strong.
 
R

ReneeP

New member
Yep, we are still here in the hospital. The plan is to let her go on Friday. She was apparently a lot sicker than I realized when she was admitted. The only PFT #'s I really know how to read are the FEV1... I don't look much at the other #'s cuz I don't understand them. Well, when they repeated the PFT's last Friday, the dr came in and was very concerned. She told me that some of her #'s were more than 80% below normal on the day she was admitted and even after 4 days here on IV antibiotics and treatments every 3 hours around the clock she was still 70% below normal. That scared me. We are repeated PFT's again tomorrow to see what happens. She is definately sounding better but still not really clear yet.

Thanks for the ideas. I wish I could get out more, but I really just can't leave her. We have no family or friends around, so it's just been her and me the whole time. I really miss my other children. That's the hardest part. But I keep telling myself it's only a few more days. We'll survive it. I just hope she gets back to normal. They think it was some sort of virus that started the problem. That triggered a major asthma attack which just wouldn't stop. She has had 2 cultures since being here and both are completely clear.. not even the normal staph is showing up... I guess that's good news at least.

Thanks again... hope to be out of here soon...
 
R

ReneeP

New member
Yep, we are still here in the hospital. The plan is to let her go on Friday. She was apparently a lot sicker than I realized when she was admitted. The only PFT #'s I really know how to read are the FEV1... I don't look much at the other #'s cuz I don't understand them. Well, when they repeated the PFT's last Friday, the dr came in and was very concerned. She told me that some of her #'s were more than 80% below normal on the day she was admitted and even after 4 days here on IV antibiotics and treatments every 3 hours around the clock she was still 70% below normal. That scared me. We are repeated PFT's again tomorrow to see what happens. She is definately sounding better but still not really clear yet.

Thanks for the ideas. I wish I could get out more, but I really just can't leave her. We have no family or friends around, so it's just been her and me the whole time. I really miss my other children. That's the hardest part. But I keep telling myself it's only a few more days. We'll survive it. I just hope she gets back to normal. They think it was some sort of virus that started the problem. That triggered a major asthma attack which just wouldn't stop. She has had 2 cultures since being here and both are completely clear.. not even the normal staph is showing up... I guess that's good news at least.

Thanks again... hope to be out of here soon...
 
R

ReneeP

New member
Yep, we are still here in the hospital. The plan is to let her go on Friday. She was apparently a lot sicker than I realized when she was admitted. The only PFT #'s I really know how to read are the FEV1... I don't look much at the other #'s cuz I don't understand them. Well, when they repeated the PFT's last Friday, the dr came in and was very concerned. She told me that some of her #'s were more than 80% below normal on the day she was admitted and even after 4 days here on IV antibiotics and treatments every 3 hours around the clock she was still 70% below normal. That scared me. We are repeated PFT's again tomorrow to see what happens. She is definately sounding better but still not really clear yet.

Thanks for the ideas. I wish I could get out more, but I really just can't leave her. We have no family or friends around, so it's just been her and me the whole time. I really miss my other children. That's the hardest part. But I keep telling myself it's only a few more days. We'll survive it. I just hope she gets back to normal. They think it was some sort of virus that started the problem. That triggered a major asthma attack which just wouldn't stop. She has had 2 cultures since being here and both are completely clear.. not even the normal staph is showing up... I guess that's good news at least.

Thanks again... hope to be out of here soon...
 
J

Jem

New member
Sending prayers and good wishes that all will go well. Two clear cultures is excellent. Hopefully Kaitlyn's FEV1 will go back up to her normal real soon and that she and you will be going home shortly.<img src="i/expressions/heart.gif" border="0">
 
J

Jem

New member
Sending prayers and good wishes that all will go well. Two clear cultures is excellent. Hopefully Kaitlyn's FEV1 will go back up to her normal real soon and that she and you will be going home shortly.<img src="i/expressions/heart.gif" border="0">
 
J

Jem

New member
Sending prayers and good wishes that all will go well. Two clear cultures is excellent. Hopefully Kaitlyn's FEV1 will go back up to her normal real soon and that she and you will be going home shortly.<img src="i/expressions/heart.gif" border="0">
 
K

kayleesgrandma

New member
just saw this, and wanted to send you prayers and well-wishes for you and Kaitlyn. Hope she gets out Friday as planned. 5 hours is a long ways away! Hope all goes well for you both.
 
K

kayleesgrandma

New member
just saw this, and wanted to send you prayers and well-wishes for you and Kaitlyn. Hope she gets out Friday as planned. 5 hours is a long ways away! Hope all goes well for you both.
 
K

kayleesgrandma

New member
just saw this, and wanted to send you prayers and well-wishes for you and Kaitlyn. Hope she gets out Friday as planned. 5 hours is a long ways away! Hope all goes well for you both.
 
A

Alyssa

New member
I posted on your other one -- then saw this one -- no need to answer me about her FEV1 numbers since you've talked about it on this one.

That's really strange that all of this could happen in the absence of bacteria.... I'm sure they've already thought about it but I have to ask... what about aspergillus...
 
A

Alyssa

New member
I posted on your other one -- then saw this one -- no need to answer me about her FEV1 numbers since you've talked about it on this one.

That's really strange that all of this could happen in the absence of bacteria.... I'm sure they've already thought about it but I have to ask... what about aspergillus...
 
A

Alyssa

New member
I posted on your other one -- then saw this one -- no need to answer me about her FEV1 numbers since you've talked about it on this one.

That's really strange that all of this could happen in the absence of bacteria.... I'm sure they've already thought about it but I have to ask... what about aspergillus...
 
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