Our first hospitalization

[Mommafirst]

I haven't been online in a couple of days, but my daughter Alyssa came down with some stomach bug earlier this week in addition to a respiratory one as well. By wednesday she was pretty dehydrated from vomitting, so our docs sent her to the ER for IV hydration. They sent us home a few hours later, but by the next morning she was still listless and dehydrated. So the CF docs decided she needed to be admitted. What I had hoped would be just one night to hydrate her, has turned into a 2 week course of IV antibiotics.<br>
<br>
Yesterday they tried to insert a PICC line so that we can go home with IVs in a day or two. The PICC was miserable. They used no sedation, indicating that sedation has respiratory side effects so she wasn't a candidate. The PICC insertion failed after absolutely torturing her. <img src="i/expressions/face-icon-small-frown.gif" border="0"><br>
<br>
Today they did another three attempts and finally got the PICC in, but she is still on hydration IV because she won't eat or drink on her own. So I think we are looking at several more days. I just don't know how to do this without falling apart. I hate to see them torturing her, it just makes me so sad.<br>
<br>
On a good note, the RT found a new super small version of the vest and got her started on it. We've got the go ahead to get one ordered!!

 

[Mommafirst]

I haven't been online in a couple of days, but my daughter Alyssa came down with some stomach bug earlier this week in addition to a respiratory one as well. By wednesday she was pretty dehydrated from vomitting, so our docs sent her to the ER for IV hydration. They sent us home a few hours later, but by the next morning she was still listless and dehydrated. So the CF docs decided she needed to be admitted. What I had hoped would be just one night to hydrate her, has turned into a 2 week course of IV antibiotics.<br>
<br>
Yesterday they tried to insert a PICC line so that we can go home with IVs in a day or two. The PICC was miserable. They used no sedation, indicating that sedation has respiratory side effects so she wasn't a candidate. The PICC insertion failed after absolutely torturing her. <img src="i/expressions/face-icon-small-frown.gif" border="0"><br>
<br>
Today they did another three attempts and finally got the PICC in, but she is still on hydration IV because she won't eat or drink on her own. So I think we are looking at several more days. I just don't know how to do this without falling apart. I hate to see them torturing her, it just makes me so sad.<br>
<br>
On a good note, the RT found a new super small version of the vest and got her started on it. We've got the go ahead to get one ordered!!

 

[Mommafirst]

I haven't been online in a couple of days, but my daughter Alyssa came down with some stomach bug earlier this week in addition to a respiratory one as well. By wednesday she was pretty dehydrated from vomitting, so our docs sent her to the ER for IV hydration. They sent us home a few hours later, but by the next morning she was still listless and dehydrated. So the CF docs decided she needed to be admitted. What I had hoped would be just one night to hydrate her, has turned into a 2 week course of IV antibiotics.<br>
<br>
Yesterday they tried to insert a PICC line so that we can go home with IVs in a day or two. The PICC was miserable. They used no sedation, indicating that sedation has respiratory side effects so she wasn't a candidate. The PICC insertion failed after absolutely torturing her. <img src="i/expressions/face-icon-small-frown.gif" border="0"><br>
<br>
Today they did another three attempts and finally got the PICC in, but she is still on hydration IV because she won't eat or drink on her own. So I think we are looking at several more days. I just don't know how to do this without falling apart. I hate to see them torturing her, it just makes me so sad.<br>
<br>
On a good note, the RT found a new super small version of the vest and got her started on it. We've got the go ahead to get one ordered!!

 

[gr33nie]

Heather

big hugs!!

My son has only been in the hospital once when he was first diagnosed and they did sedate him for his PICC but I don't know that much about it.

I would say, have as many friends/families (healthy of course) come to relieve you/bring you food, bring your DD toys etc.

I HATED to see Eli 'tortured' as well and the only think that I can say is that kids are very resilient and they get over it quick.

I hope your DD gets well very soon!!

Sarah

 

[gr33nie]

Heather

big hugs!!

My son has only been in the hospital once when he was first diagnosed and they did sedate him for his PICC but I don't know that much about it.

I would say, have as many friends/families (healthy of course) come to relieve you/bring you food, bring your DD toys etc.

I HATED to see Eli 'tortured' as well and the only think that I can say is that kids are very resilient and they get over it quick.

I hope your DD gets well very soon!!

Sarah

 

[gr33nie]

Heather

big hugs!!

My son has only been in the hospital once when he was first diagnosed and they did sedate him for his PICC but I don't know that much about it.

I would say, have as many friends/families (healthy of course) come to relieve you/bring you food, bring your DD toys etc.

I HATED to see Eli 'tortured' as well and the only think that I can say is that kids are very resilient and they get over it quick.

I hope your DD gets well very soon!!

Sarah

 

[Jane]

My best advice is get a small, fat, notebook and write everything down. It is so helpful to review things after the doctors or nurses leave. Doses, times, weight, temperatures, feedings, reactions to meds, O2 sats, so much going on. Ask lots of questions!

Another bit of advice. Take the opportunity to go out for a walk. Fresh air and exercise do wonders for your spirits!

Good luck!

 

[Jane]

My best advice is get a small, fat, notebook and write everything down. It is so helpful to review things after the doctors or nurses leave. Doses, times, weight, temperatures, feedings, reactions to meds, O2 sats, so much going on. Ask lots of questions!

Another bit of advice. Take the opportunity to go out for a walk. Fresh air and exercise do wonders for your spirits!

Good luck!

 

[Jane]

My best advice is get a small, fat, notebook and write everything down. It is so helpful to review things after the doctors or nurses leave. Doses, times, weight, temperatures, feedings, reactions to meds, O2 sats, so much going on. Ask lots of questions!

Another bit of advice. Take the opportunity to go out for a walk. Fresh air and exercise do wonders for your spirits!

Good luck!

 

[bmombtoo]

I hope you guys get sprung soon. I use to take needle work with me when Josh was younger and had to be hospitalized, not anything to mind boggling....stamped works just find. Also there's nothing like a romance novel to waste the day away.

If she likes kid movies like the wiggles, etc. you could borrow a portable DVD player to pass the time away. When Josh was younger some of the TVs had the video players.

 

[bmombtoo]

I hope you guys get sprung soon. I use to take needle work with me when Josh was younger and had to be hospitalized, not anything to mind boggling....stamped works just find. Also there's nothing like a romance novel to waste the day away.

If she likes kid movies like the wiggles, etc. you could borrow a portable DVD player to pass the time away. When Josh was younger some of the TVs had the video players.

 

[bmombtoo]

I hope you guys get sprung soon. I use to take needle work with me when Josh was younger and had to be hospitalized, not anything to mind boggling....stamped works just find. Also there's nothing like a romance novel to waste the day away.

If she likes kid movies like the wiggles, etc. you could borrow a portable DVD player to pass the time away. When Josh was younger some of the TVs had the video players.

 

[izemmom]

Oh Heather...I am so sorry. Went through this in January, and I know all too well how you are feeling. Do get out for a little bit each day, and do take notes. You will never remember every med, dose, side effect, etc for the next time you need it, otherwise. I;m sorry to say I don't have much useful advice to add. Just remember that she will get through this and you will too. We are here, keeping you in our thoughts and prayers. Here's a hug for Alyssa...(HUG).

Keep us posted.

 

[izemmom]

Oh Heather...I am so sorry. Went through this in January, and I know all too well how you are feeling. Do get out for a little bit each day, and do take notes. You will never remember every med, dose, side effect, etc for the next time you need it, otherwise. I;m sorry to say I don't have much useful advice to add. Just remember that she will get through this and you will too. We are here, keeping you in our thoughts and prayers. Here's a hug for Alyssa...(HUG).

Keep us posted.

 

[izemmom]

Oh Heather...I am so sorry. Went through this in January, and I know all too well how you are feeling. Do get out for a little bit each day, and do take notes. You will never remember every med, dose, side effect, etc for the next time you need it, otherwise. I;m sorry to say I don't have much useful advice to add. Just remember that she will get through this and you will too. We are here, keeping you in our thoughts and prayers. Here's a hug for Alyssa...(HUG).

Keep us posted.

 

[Mommafirst]

Thanks for all the support everyone!! We are home now, they let us go this morning. We had a two hour session with the home nurse on how to give the IVs and its a bit overwhelming, but I'd rather get up in the middle of the night and do her IVs through the day then be stuck in the hospital.<br>
<br>
Reality has a way of coming crashing in with CF. I'm sick of crying over this and the reality is we've only just begun. <br>
<br>
But Alyssa is a bit spooked, but overall doing well. I think she may sleep for days to catch up on all the lost sleep in the hospital. <br>
<br>
Hugs to all of you who have been through this before, and those who have done it time and time again. I think I need to be an official member of the I hate CF club!!

 

[Mommafirst]

Thanks for all the support everyone!! We are home now, they let us go this morning. We had a two hour session with the home nurse on how to give the IVs and its a bit overwhelming, but I'd rather get up in the middle of the night and do her IVs through the day then be stuck in the hospital.<br>
<br>
Reality has a way of coming crashing in with CF. I'm sick of crying over this and the reality is we've only just begun. <br>
<br>
But Alyssa is a bit spooked, but overall doing well. I think she may sleep for days to catch up on all the lost sleep in the hospital. <br>
<br>
Hugs to all of you who have been through this before, and those who have done it time and time again. I think I need to be an official member of the I hate CF club!!

 

[Mommafirst]

Thanks for all the support everyone!! We are home now, they let us go this morning. We had a two hour session with the home nurse on how to give the IVs and its a bit overwhelming, but I'd rather get up in the middle of the night and do her IVs through the day then be stuck in the hospital.<br>
<br>
Reality has a way of coming crashing in with CF. I'm sick of crying over this and the reality is we've only just begun. <br>
<br>
But Alyssa is a bit spooked, but overall doing well. I think she may sleep for days to catch up on all the lost sleep in the hospital. <br>
<br>
Hugs to all of you who have been through this before, and those who have done it time and time again. I think I need to be an official member of the I hate CF club!!

 

[amysmom]

I'm so sorry to hear about your little girl. I remember our daughter's first hospitalization (she's 25 now) and it was as hard as you're saying. Keep focusing on how great it will be when it's over. On the practical side, I think (if your're not already doing it) it's crucial for you or another trusted friend or family member be with her every minute. The hospitals do their best but so many small things come up and I remember thinking how devastated I would have been if I hadn't been there to handle it (and of course, Amy would have been also). I know it's really hard but regrets are just as painful as the hospitalizaiton itself.

 

[amysmom]

I'm so sorry to hear about your little girl. I remember our daughter's first hospitalization (she's 25 now) and it was as hard as you're saying. Keep focusing on how great it will be when it's over. On the practical side, I think (if your're not already doing it) it's crucial for you or another trusted friend or family member be with her every minute. The hospitals do their best but so many small things come up and I remember thinking how devastated I would have been if I hadn't been there to handle it (and of course, Amy would have been also). I know it's really hard but regrets are just as painful as the hospitalizaiton itself.