Update on Nephew

[ConcernedAunt]

I talked with my mom this morning. She said they must of taken 15 viles of blood from him yesterday, for genetic testing (which I don't know how b/c he is so small), they saw about 20 doctors since it is a teaching hospital and was in the ER most of the day waiting for a bed to open up. Finally they got a room and met with thier new ped., which they like. My mom said they did another chest xray and found fluid in the left chest. He has pnemonia. His white blood count is 24 so they knew there was an infection somewhere. Anyways they have put him on an antibiotic, oxygen and are feeding him through an IV some formula that starts with a "P" and has enzymes in it. They still want my sister to breastfeed but I guess need him on an upward spiral untill they can give him a bottle. They are very concrned about him being so little. So now that we know he is going to be in there for awhile I need to know what goodies I should take my sister when I go visit tonight. I went out last night and got her some calling cards since you can't use your cells phones in the hospital and I was going to get some snacks

 

[ConcernedAunt]

I talked with my mom this morning. She said they must of taken 15 viles of blood from him yesterday, for genetic testing (which I don't know how b/c he is so small), they saw about 20 doctors since it is a teaching hospital and was in the ER most of the day waiting for a bed to open up. Finally they got a room and met with thier new ped., which they like. My mom said they did another chest xray and found fluid in the left chest. He has pnemonia. His white blood count is 24 so they knew there was an infection somewhere. Anyways they have put him on an antibiotic, oxygen and are feeding him through an IV some formula that starts with a "P" and has enzymes in it. They still want my sister to breastfeed but I guess need him on an upward spiral untill they can give him a bottle. They are very concrned about him being so little. So now that we know he is going to be in there for awhile I need to know what goodies I should take my sister when I go visit tonight. I went out last night and got her some calling cards since you can't use your cells phones in the hospital and I was going to get some snacks

 

[ConcernedAunt]

I talked with my mom this morning. She said they must of taken 15 viles of blood from him yesterday, for genetic testing (which I don't know how b/c he is so small), they saw about 20 doctors since it is a teaching hospital and was in the ER most of the day waiting for a bed to open up. Finally they got a room and met with thier new ped., which they like. My mom said they did another chest xray and found fluid in the left chest. He has pnemonia. His white blood count is 24 so they knew there was an infection somewhere. Anyways they have put him on an antibiotic, oxygen and are feeding him through an IV some formula that starts with a "P" and has enzymes in it. They still want my sister to breastfeed but I guess need him on an upward spiral untill they can give him a bottle. They are very concrned about him being so little. So now that we know he is going to be in there for awhile I need to know what goodies I should take my sister when I go visit tonight. I went out last night and got her some calling cards since you can't use your cells phones in the hospital and I was going to get some snacks

 

[MCGrad2006]

Does your sister like crossword puzzle books or sudoku or something like that? Those are sometimes fun and take up a lot of time. If she has a DVD player in the room, maybe some movies. Some comfortable slippers...books...I hope your nephew is getting better soon! I have been reading your posts and have been thinking about you guys. I am 22 with CF. I was diagnosed at 6 months...because I only weighed like 12 pounds. I dont really know what they did when they admitted me that time, but you can totally see a difference once I started on the enzymes. I was a scrawny lil baby with tiny legs and arms and sunken eyes before they figured what was wrong, and then I got somewhat chubby...in a good way. Hopefully your nephew will be better soon! Keep us posted.

 

[MCGrad2006]

Does your sister like crossword puzzle books or sudoku or something like that? Those are sometimes fun and take up a lot of time. If she has a DVD player in the room, maybe some movies. Some comfortable slippers...books...I hope your nephew is getting better soon! I have been reading your posts and have been thinking about you guys. I am 22 with CF. I was diagnosed at 6 months...because I only weighed like 12 pounds. I dont really know what they did when they admitted me that time, but you can totally see a difference once I started on the enzymes. I was a scrawny lil baby with tiny legs and arms and sunken eyes before they figured what was wrong, and then I got somewhat chubby...in a good way. Hopefully your nephew will be better soon! Keep us posted.

 

[MCGrad2006]

Does your sister like crossword puzzle books or sudoku or something like that? Those are sometimes fun and take up a lot of time. If she has a DVD player in the room, maybe some movies. Some comfortable slippers...books...I hope your nephew is getting better soon! I have been reading your posts and have been thinking about you guys. I am 22 with CF. I was diagnosed at 6 months...because I only weighed like 12 pounds. I dont really know what they did when they admitted me that time, but you can totally see a difference once I started on the enzymes. I was a scrawny lil baby with tiny legs and arms and sunken eyes before they figured what was wrong, and then I got somewhat chubby...in a good way. Hopefully your nephew will be better soon! Keep us posted.

 

[Rebjane]

Calling cards are a great idea. You could send a little package of toiletries, tothpaste toothbrush, shower gel, lotion, Purell(liquid hand sanitizer). You're sister may not want to take leave her baby so she can refresh herself at the hospital. Snacks are good too.

 

[Rebjane]

Calling cards are a great idea. You could send a little package of toiletries, tothpaste toothbrush, shower gel, lotion, Purell(liquid hand sanitizer). You're sister may not want to take leave her baby so she can refresh herself at the hospital. Snacks are good too.

 

[Rebjane]

Calling cards are a great idea. You could send a little package of toiletries, tothpaste toothbrush, shower gel, lotion, Purell(liquid hand sanitizer). You're sister may not want to take leave her baby so she can refresh herself at the hospital. Snacks are good too.

 

[Ratatosk]

Probably pregestimil -- bleah! Formula tasted like vomit and the way road kill smells. Hopefully her dietician can get her info on the cheapest source for it or your sister can stick with breastfeeding. DS wouldn't take it, so we had him switched to regular formula.

When DS was in the NICU, I'd go get the newspaper and some sorta decadent coffee drink and I'd read the paper, try to do the crossword. DH bought me the new Harry Potter book, so I'd rock DS and read outloud to him, sing to him.

We saw our time at the hospital as a time to learn how to do CPT -- every time an RT came in to do treatments, we'd have them supervise, offer suggestions to make sure we were doing things right.

On a side note, our NICU nurse was concerned with them taking too much blood from DS on a daily basis. Realized they had to take some to monitor levels with some of the iv antibiotics and see if he was growing anything, but it got to the point that they were taking so much blood that they were seriously considering a transfusion.

 

[Ratatosk]

Probably pregestimil -- bleah! Formula tasted like vomit and the way road kill smells. Hopefully her dietician can get her info on the cheapest source for it or your sister can stick with breastfeeding. DS wouldn't take it, so we had him switched to regular formula.

When DS was in the NICU, I'd go get the newspaper and some sorta decadent coffee drink and I'd read the paper, try to do the crossword. DH bought me the new Harry Potter book, so I'd rock DS and read outloud to him, sing to him.

We saw our time at the hospital as a time to learn how to do CPT -- every time an RT came in to do treatments, we'd have them supervise, offer suggestions to make sure we were doing things right.

On a side note, our NICU nurse was concerned with them taking too much blood from DS on a daily basis. Realized they had to take some to monitor levels with some of the iv antibiotics and see if he was growing anything, but it got to the point that they were taking so much blood that they were seriously considering a transfusion.

 

[Ratatosk]

Probably pregestimil -- bleah! Formula tasted like vomit and the way road kill smells. Hopefully her dietician can get her info on the cheapest source for it or your sister can stick with breastfeeding. DS wouldn't take it, so we had him switched to regular formula.

When DS was in the NICU, I'd go get the newspaper and some sorta decadent coffee drink and I'd read the paper, try to do the crossword. DH bought me the new Harry Potter book, so I'd rock DS and read outloud to him, sing to him.

We saw our time at the hospital as a time to learn how to do CPT -- every time an RT came in to do treatments, we'd have them supervise, offer suggestions to make sure we were doing things right.

On a side note, our NICU nurse was concerned with them taking too much blood from DS on a daily basis. Realized they had to take some to monitor levels with some of the iv antibiotics and see if he was growing anything, but it got to the point that they were taking so much blood that they were seriously considering a transfusion.

 

[Liamsmommy]

I have had my fair share of hospital stays with my babies and The one thing that i really appreciated was calling cards, word searches, books, "real food" (sandwiches and things that could be heated in the mic.) toilet paper and all toiletries that make you feel like your at home.

Its really hard being away from family so its nice to have visitors witch is not always possible my daughter (first admit was 3 month 2nd 14 month and 3 18 months) is always at the children's hospital witch is 3 hours away from home so we tried to bring her photos and toys from home so that she still had things that she knew. (I know Emma is a bit older but we also did that when she was 3 months not that she played with toys buy it made the room more fun not so much like a hospital)

Thoughts and Prayers
Shawna

 

[Liamsmommy]

I have had my fair share of hospital stays with my babies and The one thing that i really appreciated was calling cards, word searches, books, "real food" (sandwiches and things that could be heated in the mic.) toilet paper and all toiletries that make you feel like your at home.

Its really hard being away from family so its nice to have visitors witch is not always possible my daughter (first admit was 3 month 2nd 14 month and 3 18 months) is always at the children's hospital witch is 3 hours away from home so we tried to bring her photos and toys from home so that she still had things that she knew. (I know Emma is a bit older but we also did that when she was 3 months not that she played with toys buy it made the room more fun not so much like a hospital)

Thoughts and Prayers
Shawna

 

[Liamsmommy]

I have had my fair share of hospital stays with my babies and The one thing that i really appreciated was calling cards, word searches, books, "real food" (sandwiches and things that could be heated in the mic.) toilet paper and all toiletries that make you feel like your at home.

Its really hard being away from family so its nice to have visitors witch is not always possible my daughter (first admit was 3 month 2nd 14 month and 3 18 months) is always at the children's hospital witch is 3 hours away from home so we tried to bring her photos and toys from home so that she still had things that she knew. (I know Emma is a bit older but we also did that when she was 3 months not that she played with toys buy it made the room more fun not so much like a hospital)

Thoughts and Prayers
Shawna

 

[lalasmomallie]

When my fourth was a newborn she was in and out of the hospital frequently and there were many long nights that would seem to drag on forever. The mornings were always a blur because the shift change and docs would come in and out but then there would be a down time mid afternoon. Silly gossip magazines that I normally wouldn't buy for myself were great and I love playing sudoku. Anything to let her mind escape! Also, I would get desperate for a shower. Some of my friends would be sure to come by to just allow me time to shower,dry my hair and maybe even go crazy and put on some deodorant! It was somehow comforting to be able to shower without having to keep peeking out the bathroom door to see if a nurse was coming in or if the baby was awake. I also received great goodie baskets that were awesome! Lots of quick and easy snacks. Be sure to put in her favorite beverages! If she's breast feeding they will want to keep her hydrated but it gets annoying having to call out to the nurse every time you want to get something to drink! Also remember that she won't <b>know</b> what she needs. Everyone would call and ask me what I needed and most of the time I would say nothing because I was too tired to think. The things that meant the most to me were from those friends who just did something without asking me. But far and away the worst times were at night. At our hospital "dinner" was brought in to me around 4:30! (they provided meals for nursing moms) So by 10:00 everyone was gone. Husband was home with our other kiddos and the phone would stop ringing because no one wants to "bother" you. It was LONELY! T.V. would get old and then your mind gets going and it doesn't turn off! Look at the store for some of those hand held electronic games like blackjack, solitaire, etc. I got one that was "Who want's to be a Millionaire" like the T.V. show and it was great because trying to guess trivia was mind-numbing and a great way to pass the time! But most of all just remember that she will pretend to be alot stronger than she really feels. That's what Mom's do but sometimes we just need someone to take care of us. She's very lucky to have you and I will be praying for all of your family!
Allie

 

[lalasmomallie]

When my fourth was a newborn she was in and out of the hospital frequently and there were many long nights that would seem to drag on forever. The mornings were always a blur because the shift change and docs would come in and out but then there would be a down time mid afternoon. Silly gossip magazines that I normally wouldn't buy for myself were great and I love playing sudoku. Anything to let her mind escape! Also, I would get desperate for a shower. Some of my friends would be sure to come by to just allow me time to shower,dry my hair and maybe even go crazy and put on some deodorant! It was somehow comforting to be able to shower without having to keep peeking out the bathroom door to see if a nurse was coming in or if the baby was awake. I also received great goodie baskets that were awesome! Lots of quick and easy snacks. Be sure to put in her favorite beverages! If she's breast feeding they will want to keep her hydrated but it gets annoying having to call out to the nurse every time you want to get something to drink! Also remember that she won't <b>know</b> what she needs. Everyone would call and ask me what I needed and most of the time I would say nothing because I was too tired to think. The things that meant the most to me were from those friends who just did something without asking me. But far and away the worst times were at night. At our hospital "dinner" was brought in to me around 4:30! (they provided meals for nursing moms) So by 10:00 everyone was gone. Husband was home with our other kiddos and the phone would stop ringing because no one wants to "bother" you. It was LONELY! T.V. would get old and then your mind gets going and it doesn't turn off! Look at the store for some of those hand held electronic games like blackjack, solitaire, etc. I got one that was "Who want's to be a Millionaire" like the T.V. show and it was great because trying to guess trivia was mind-numbing and a great way to pass the time! But most of all just remember that she will pretend to be alot stronger than she really feels. That's what Mom's do but sometimes we just need someone to take care of us. She's very lucky to have you and I will be praying for all of your family!
Allie

 

[lalasmomallie]

When my fourth was a newborn she was in and out of the hospital frequently and there were many long nights that would seem to drag on forever. The mornings were always a blur because the shift change and docs would come in and out but then there would be a down time mid afternoon. Silly gossip magazines that I normally wouldn't buy for myself were great and I love playing sudoku. Anything to let her mind escape! Also, I would get desperate for a shower. Some of my friends would be sure to come by to just allow me time to shower,dry my hair and maybe even go crazy and put on some deodorant! It was somehow comforting to be able to shower without having to keep peeking out the bathroom door to see if a nurse was coming in or if the baby was awake. I also received great goodie baskets that were awesome! Lots of quick and easy snacks. Be sure to put in her favorite beverages! If she's breast feeding they will want to keep her hydrated but it gets annoying having to call out to the nurse every time you want to get something to drink! Also remember that she won't <b>know</b> what she needs. Everyone would call and ask me what I needed and most of the time I would say nothing because I was too tired to think. The things that meant the most to me were from those friends who just did something without asking me. But far and away the worst times were at night. At our hospital "dinner" was brought in to me around 4:30! (they provided meals for nursing moms) So by 10:00 everyone was gone. Husband was home with our other kiddos and the phone would stop ringing because no one wants to "bother" you. It was LONELY! T.V. would get old and then your mind gets going and it doesn't turn off! Look at the store for some of those hand held electronic games like blackjack, solitaire, etc. I got one that was "Who want's to be a Millionaire" like the T.V. show and it was great because trying to guess trivia was mind-numbing and a great way to pass the time! But most of all just remember that she will pretend to be alot stronger than she really feels. That's what Mom's do but sometimes we just need someone to take care of us. She's very lucky to have you and I will be praying for all of your family!
Allie

 

[ktsmom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lalasmomallie</b></i>

But most of all just remember that she will pretend to be alot stronger than she really feels. That's what Mom's do but sometimes we just need someone to take care of us. She's very lucky to have you and I will be praying for all of your family!

Allie</end quote></div>


Isn't that the truth! Concerned Aunt your sis is so so lucky to have you and I admire you for being there for her. I will be pulling for your family to make it through this temporary setback and please know that there are more manageable times ahead. Hang in there!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lalasmomallie</b></i>

But most of all just remember that she will pretend to be alot stronger than she really feels. That's what Mom's do but sometimes we just need someone to take care of us. She's very lucky to have you and I will be praying for all of your family!

Allie</end quote></div>


Isn't that the truth! Concerned Aunt your sis is so so lucky to have you and I admire you for being there for her. I will be pulling for your family to make it through this temporary setback and please know that there are more manageable times ahead. Hang in there!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)