How...?!? This is really overwhelming.

H

hmw

New member
This is SO overwhelming. Emily is home on IV's for the first time and trying to manage her care, plus 2 other children, plus anything else (hah! everything else is a disaster) just feels impossible.

She's on 2 meds that take almost 2hrs to run (total); the first of the day starts at 6 and the last of the day doesn't finish until just about midnight.

She has nighttime feeds and depending on her appetite and stooling, some daytime bolus feeds.

She is on 4 vest/neb treatments a day, which are taking an hour each.

She is *miserable* ...tired, cranky, coughing, congested, not feeling well. The boys are stressed out about how sick she's been and it's showing- this is new for them too, and one of her brothers is also sick (will be seeing the ped tomorrow.)

Please- any suggestions for how to make this work and less stressful?
 
H

hmw

New member
This is SO overwhelming. Emily is home on IV's for the first time and trying to manage her care, plus 2 other children, plus anything else (hah! everything else is a disaster) just feels impossible.

She's on 2 meds that take almost 2hrs to run (total); the first of the day starts at 6 and the last of the day doesn't finish until just about midnight.

She has nighttime feeds and depending on her appetite and stooling, some daytime bolus feeds.

She is on 4 vest/neb treatments a day, which are taking an hour each.

She is *miserable* ...tired, cranky, coughing, congested, not feeling well. The boys are stressed out about how sick she's been and it's showing- this is new for them too, and one of her brothers is also sick (will be seeing the ped tomorrow.)

Please- any suggestions for how to make this work and less stressful?
 
H

hmw

New member
This is SO overwhelming. Emily is home on IV's for the first time and trying to manage her care, plus 2 other children, plus anything else (hah! everything else is a disaster) just feels impossible.
<br />
<br />She's on 2 meds that take almost 2hrs to run (total); the first of the day starts at 6 and the last of the day doesn't finish until just about midnight.
<br />
<br />She has nighttime feeds and depending on her appetite and stooling, some daytime bolus feeds.
<br />
<br />She is on 4 vest/neb treatments a day, which are taking an hour each.
<br />
<br />She is *miserable* ...tired, cranky, coughing, congested, not feeling well. The boys are stressed out about how sick she's been and it's showing- this is new for them too, and one of her brothers is also sick (will be seeing the ped tomorrow.)
<br />
<br />Please- any suggestions for how to make this work and less stressful?
 
T

TonyaH

Guest
Hi Harriett,
I am sorry you are having such a rough time with things. The first round of home ivs is definitely the worst. Everything is new and a little scary...even for siblings. I have not had to deal with night feeds in addition to ivs, so you have a double whammy. The best advice I can give is sleep when you can. I am basically a walking zombie when Andrew is on iv therapy. But if it helps at all, each time does get a little easier and your body adjusts to the lack of sleep a little faster.

I hope Emily feels better soon. I really can't blame her for being tired and cranky. When I think of the chemicals being pumped through these kiddos it's just too much.

Hang in there!..I'm thinking of you!!
 
T

TonyaH

Guest
Hi Harriett,
I am sorry you are having such a rough time with things. The first round of home ivs is definitely the worst. Everything is new and a little scary...even for siblings. I have not had to deal with night feeds in addition to ivs, so you have a double whammy. The best advice I can give is sleep when you can. I am basically a walking zombie when Andrew is on iv therapy. But if it helps at all, each time does get a little easier and your body adjusts to the lack of sleep a little faster.

I hope Emily feels better soon. I really can't blame her for being tired and cranky. When I think of the chemicals being pumped through these kiddos it's just too much.

Hang in there!..I'm thinking of you!!
 
T

TonyaH

Guest
Hi Harriett,
<br />I am sorry you are having such a rough time with things. The first round of home ivs is definitely the worst. Everything is new and a little scary...even for siblings. I have not had to deal with night feeds in addition to ivs, so you have a double whammy. The best advice I can give is sleep when you can. I am basically a walking zombie when Andrew is on iv therapy. But if it helps at all, each time does get a little easier and your body adjusts to the lack of sleep a little faster.
<br />
<br />I hope Emily feels better soon. I really can't blame her for being tired and cranky. When I think of the chemicals being pumped through these kiddos it's just too much.
<br />
<br />Hang in there!..I'm thinking of you!!
 
E

edan

Guest
Hi Harriet. We had hospital then home IVs just 3 months after diagnosis. I was a wreck the first few days for me, and I don't have any other children or home feedings. You are a strong, strong woman. If you have a chance, please get out for some time for yourself, if only for an hour a day. It really makes a difference when you can clear your brain!

Thinking of you,

Edan.
 
E

edan

Guest
Hi Harriet. We had hospital then home IVs just 3 months after diagnosis. I was a wreck the first few days for me, and I don't have any other children or home feedings. You are a strong, strong woman. If you have a chance, please get out for some time for yourself, if only for an hour a day. It really makes a difference when you can clear your brain!

Thinking of you,

Edan.
 
E

edan

Guest
Hi Harriet. We had hospital then home IVs just 3 months after diagnosis. I was a wreck the first few days for me, and I don't have any other children or home feedings. You are a strong, strong woman. If you have a chance, please get out for some time for yourself, if only for an hour a day. It really makes a difference when you can clear your brain!
<br />
<br />Thinking of you,
<br />
<br />Edan.
<br />
<br />
 
G

grantsmom

Guest
Harriet, so sorry Emily is having a rough time. Please keep us posted. Take Care
 
G

grantsmom

Guest
Harriet, so sorry Emily is having a rough time. Please keep us posted. Take Care
 
G

grantsmom

Guest
Harriet, so sorry Emily is having a rough time. Please keep us posted. Take Care
 
L

Liza

New member
Hi Harriett, The first time is kinda scary too. 2 hrs. is a long time for an antibiotic to run. First I want to ask if she's on a syrnge pump or the little balls? If you are using the little balls, which at this moment I can not remember the name, be sure to take them out of the refridgerator about a half hour before you are going to hook her up. Cold meds run slower. If they gave you bags and are relying on gravity, that sucks! We had those once and we had to hang them really high, like on the curtain rod. If it's the pump, ask about running it faster, what did they usually run it when she was in the hospital? also, check in the times they have set. Usually they will allow you to adjust them to better meet your needs. For us, we rather get up a little earlier to hook Anna' up so that she could be finished with the evening dose on the 12 hr med. at a decent time. It also allowed her to go to school and not be late. We also ran the 6hr and 12 hr meds back to back. If you did not get those little balls, ask about them. They are way way better to deal with. She can move around easier cause she can tuck it in a pocket.

Did she start off with home meds straight away? My girls always had to do a couple of days in hospital then were released on home IV. They were almost always on Tobra and they wanted to be sure of the levels first. Plus, they got some intense PT before heading home and usually had started feeling better. BUT, they never did home IV until high school... Well Anna' was in the 10th grade and Rachel was a college freshman. Before that, neither was comfortable with it. One of the hardest parts is doing PT 4 times a day like when they are in the hospital, mostly because you have so much else going on.

May I ask, why you chose home IV? It should get easier once you get into a routine. I never had to deal with feedings so I have no idea what all that entails in addition to the IV's and extra PT. I hope she and her brother feel better soon. Hang in there.
 
L

Liza

New member
Hi Harriett, The first time is kinda scary too. 2 hrs. is a long time for an antibiotic to run. First I want to ask if she's on a syrnge pump or the little balls? If you are using the little balls, which at this moment I can not remember the name, be sure to take them out of the refridgerator about a half hour before you are going to hook her up. Cold meds run slower. If they gave you bags and are relying on gravity, that sucks! We had those once and we had to hang them really high, like on the curtain rod. If it's the pump, ask about running it faster, what did they usually run it when she was in the hospital? also, check in the times they have set. Usually they will allow you to adjust them to better meet your needs. For us, we rather get up a little earlier to hook Anna' up so that she could be finished with the evening dose on the 12 hr med. at a decent time. It also allowed her to go to school and not be late. We also ran the 6hr and 12 hr meds back to back. If you did not get those little balls, ask about them. They are way way better to deal with. She can move around easier cause she can tuck it in a pocket.

Did she start off with home meds straight away? My girls always had to do a couple of days in hospital then were released on home IV. They were almost always on Tobra and they wanted to be sure of the levels first. Plus, they got some intense PT before heading home and usually had started feeling better. BUT, they never did home IV until high school... Well Anna' was in the 10th grade and Rachel was a college freshman. Before that, neither was comfortable with it. One of the hardest parts is doing PT 4 times a day like when they are in the hospital, mostly because you have so much else going on.

May I ask, why you chose home IV? It should get easier once you get into a routine. I never had to deal with feedings so I have no idea what all that entails in addition to the IV's and extra PT. I hope she and her brother feel better soon. Hang in there.
 
L

Liza

New member
Hi Harriett, The first time is kinda scary too. 2 hrs. is a long time for an antibiotic to run. First I want to ask if she's on a syrnge pump or the little balls? If you are using the little balls, which at this moment I can not remember the name, be sure to take them out of the refridgerator about a half hour before you are going to hook her up. Cold meds run slower. If they gave you bags and are relying on gravity, that sucks! We had those once and we had to hang them really high, like on the curtain rod. If it's the pump, ask about running it faster, what did they usually run it when she was in the hospital? also, check in the times they have set. Usually they will allow you to adjust them to better meet your needs. For us, we rather get up a little earlier to hook Anna' up so that she could be finished with the evening dose on the 12 hr med. at a decent time. It also allowed her to go to school and not be late. We also ran the 6hr and 12 hr meds back to back. If you did not get those little balls, ask about them. They are way way better to deal with. She can move around easier cause she can tuck it in a pocket.
<br />
<br />Did she start off with home meds straight away? My girls always had to do a couple of days in hospital then were released on home IV. They were almost always on Tobra and they wanted to be sure of the levels first. Plus, they got some intense PT before heading home and usually had started feeling better. BUT, they never did home IV until high school... Well Anna' was in the 10th grade and Rachel was a college freshman. Before that, neither was comfortable with it. One of the hardest parts is doing PT 4 times a day like when they are in the hospital, mostly because you have so much else going on.
<br />
<br />May I ask, why you chose home IV? It should get easier once you get into a routine. I never had to deal with feedings so I have no idea what all that entails in addition to the IV's and extra PT. I hope she and her brother feel better soon. Hang in there.
<br />
<br />
 
R

rarab43

Guest
We have done home IVs twice and the second time was easier but for us- no other children at home- it is really better to stay in the hospital. I know that is not the case for all but for us it is. Hope you all feel better soon.
 
R

rarab43

Guest
We have done home IVs twice and the second time was easier but for us- no other children at home- it is really better to stay in the hospital. I know that is not the case for all but for us it is. Hope you all feel better soon.
 
R

rarab43

Guest
We have done home IVs twice and the second time was easier but for us- no other children at home- it is really better to stay in the hospital. I know that is not the case for all but for us it is. Hope you all feel better soon.
 
S

SARAHSARAH253

New member
Don't have any tips to offer. But I just wanted to tell you I will keep Emily in my prayers. Stay Strong!! BIG HUGS!

Love,

Sarh

Mommy to Johnny 3 1/2 w/cf and Bailey 1 1/2 nocf
 
S

SARAHSARAH253

New member
Don't have any tips to offer. But I just wanted to tell you I will keep Emily in my prayers. Stay Strong!! BIG HUGS!

Love,

Sarh

Mommy to Johnny 3 1/2 w/cf and Bailey 1 1/2 nocf
 
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