Baby back in the hospital!

Lorelei (yes that is the right spelling) is back in the hospital. She is running 103.5 temp and the dr's don't want to risk anything so they are back. My sister is handling it so far ok. She says sometimes she feels very strong about it and other's she just wants to cry. I said i believed that was normal. But it sounds like we are all getting a better grip about the whole thing. But I do feel bad that they had to go back.
My brother has suggested that maybe our older niece come and stay with them until school is out. Unfortunatly she is not getting the attention she needs. No fault of anyone. Just that the baby is the center of all the attention right now. My sister is thinking about it but is worried that thier life should try and hold on to some normal. Anyway waiting to hear from them from the hospital.
At least she was able to get stuff from home this time. But she had to do it alone cause my brother in law was not off work yet.
I will stop babaling now.Just pouring it out.:o

{{{{{{{{{{{{{{{{Brandi, sister and Lorelei}}}}}}}}}}}}}}}}}}}

Sending butterflies to cool her temperature, and to bring peace and calm and good feelings.

How old is the older niece? Does she understand what's going on? If anyone can spend some one on one time with her, I think that would be good. She is probably going through a lot of emotions just like you and your sister are, but she's probably too young to understand or express them.

My thoughts and butterflies are with all of you,
Hugs,
~T~

Quote:

---

Originally Posted by LBTC

{{{{{{{{{{{{{{{{Brandi, sister and Lorelei}}}}}}}}}}}}}}}}}}}

Sending butterflies to cool her temperature, and to bring peace and calm and good feelings.

How old is the older niece? Does she understand what's going on? If anyone can spend some one on one time with her, I think that would be good. She is probably going through a lot of emotions just like you and your sister are, but she's probably too young to understand or express them.

My thoughts and butterflies are with all of you,
Hugs,
~T~

---

Noel is 10. She kinda understands but it is still hard for her. We are trying to work something out. Either coming and visiting me for a week or going to my brother's. His house is all kid. He has three of he's own. And he is a great dad. And my sister in law is a good mom I think they would be good for Noel right now. Besides she is starting to have some troubles in school. So it might be good for her to get some attention.
Mom and Baby are resting right now. Baby is on IV antibiotics and fluids. I sent your butterflies to them!

Oh MAN Brandi!
Something is not right- as if ya'll didn't know that...
Scary scary thing not being able to figure it out. UGH!
And inserting my .02 here. I think your neice going to stay w/your bro sounds like a fab idea. Esp. if they are a grounded family who can show her some stability. She prolly needs that right now.
Ok, back to prayers for the little pumpkin!

Sorry to hear that, Brandi.

If your niece ends up with some chronic condition, there's not going to be any normal again. I understand your sister's desire for that for her other daughter, but the reality is that Noele's sister is sick with some unknown thing. If your sister can't be there for Noele, it would be best if someone else who cares about her can be. What a wonderful thing for your brother to offer.

Karen

I'm so sorry your niece is back in the hospital. Maybe the doctor's can determine what's causing her problems.

My thoughts are with your family and Lorelei...

I am not a mom to humans but when my hubby was in the hospital I felt so neglectful to my fur-babies! I would think that if your bros has other kids of his own that would be a good distraction for Noel and a relief to your sister...both could have daily phone chats...but also your sister will hopefully have a little sense of comfort knowing her older daughter is well cared for and busy!

((((((((((Brandi, Lorelei, and Noel)))))))))))

Warm fuzzies to the girls - Lorelei to get well, and a stable family for Noel. Hope her doctors can figure out what's making Lorelei sick. Going to her uncle's sounds like a good plan for Noel, especially if she's having trouble at school. Poor lass may understand on one level, but on another, she's thinking "what about me?"

Thanks all for you well wishes. And in case you all didn't know (I did post not but a few days ago) they have figured out more or less what is wrong with her. Can't explain it but it is very rare (one in a million) she will have to have chemo for about 6 months. It is not cancer but sure acts like it. It has something to do with her white blood cells attacking her tissue. Which explains the swelling in her face and the lumpyness on her forhead.
She is supposed to have two final test on thursday to determine that this is what she has. But becuase of the temp they can't do these final tests. So I think that is why they admitted her to get the temp down in order to get moving n all this. Sigh....... I am glad that we have more of an answer now though.
If anyone would like to send a cardor anything to her I would be happy to give thier address. Lorelie loves powerpuff girls and curious george. Just pm and I will give the address.

I am so sorry to hear that she is back in the hospital. My thoughts are with with her. Sending positive energy her way.

Oh, Brandi, that's tough. You've all barely had time to start to understand what this rare condition is, and already back in the hospital for the little one. I hope that they're able to get that fever under control soon, and finish up the final tests, so that they're able to come up with the best possible treatment plan for Lorelei.

It does sound like the good news is that your sister has a great extended family, including you, that are offering just the kind of emotional and material support that she'll need as they go through this difficult illness.

Keep us posted, ok? So you can support your sister, and we can support you.

(Hugs)

I'm glad for several things:

• The problem's not a mystery and they know what they're treating
• Your sister is starting to accept the situation and is finding some inner strength
• The entire family seems incredibly supportive and very much in it together

You're doing great Brandi!

aha, autoimmune disorder. How awful to be happening to such a little kid.

I woke up this morning with a cold sore on my lip. I always get them from stress! I got this from my grandmother when I was little I am sure of it. You know before they knew you could spread these kinds of things. We thought it was genetic. "Oh look just like grandma" must run in the family! Yea!
I need to ride more! With the weather and all it has been hard. Not complaining I know some of you are stuck on trainers for a while longer cause of your weather. We don't have a trainer. Should get one though.
Anyway have not heard from my sister since yesterday morning. Not sure what is up.

wow.... I hadn't heard what was going on Brandi... that's a lot for a family to handle. It's gotta be scary for the Noele as well... I like the idea of her having short "getaways" with the family. Kids process trauma differently than adults and some escape time could be good and healthy for her too. Your poor sis... having a sick child is every parents nightmare. I feel for her... glad you have a supportive family to be there for her and her DH too.

That poor kid--and poor family, too.
Hugs and positive thoughts coming your (and their) way.

The baby had two operations today. Very involved and both for samples. They are now saying they think it is not what they thought! Huge fricken sigh of frustration now! My sister sent me a pic (she asked first) and I almost freaked out from saddness. She has almost no hair now! And has hug incisions on 2 differnt places on her head. One from a couple weeks ago and one on top of her head from today. Today they took a piece of her skull and bone marrow tissue sample. It is just awful.
While riding today I almost broke down But some how sucked it up. I think to much when I ride sometimes. So I stopped thinking. Almost don't remember the ride.
We are all back to being mad. We had an answer and now they are 99% sure it is not what we thought. (shaking my head).
I had to let my sister just vent. And she vented about everything!
Her temp has been gone for a full day now. SO 1 good thing. But almost back to square one.:mad:

((((brandi))))) :(

Oh, Brandi,

What a roller coaster of emotions you all must be experiencing...

It's got to be very frustrating to get changing answers on the diagnosis, but try to remember that it's a very good thing that they did these further tests to confirm before starting any treatment. Her best outcome will come from an accurate diagnosis, so she gets just the right treatment. That place of not knowing is very difficult to sit through, I know.

Hang on to the HOPE. I have 2 friends whose babies had congenital problems that required cranial (skull) and brain surgery as infants, and another friend whose daughter had a cancerous brain tumor as a toddler. All 3 of those children are happy, healthy teen-agers now who don't remember their early medical traumas at all. Their moms won't ever forget, though.

It's a very helpless feeling to see a child going through these things. My heart goes out to all of you.

(((More hugs)))

(((((((((Brandi & Lorelei))))))))))))

Unfortunately wee ones can't point to something and say it hurts here, or describe very well what's going on, how long it's been going on, or if things have changed. That's what makes pediatric medicine so difficult - according to my cousin the FP Doc.

Do you feel like your neice's life is a episode of "House" and you want it wrapped up at the end of the hour?

Quote:

---

Originally Posted by bmccasland

(((((((((Brandi & Lorelei))))))))))))

Unfortunately wee ones can't point to something and say it hurts here, or describe very well what's going on, how long it's been going on, or if things have changed. That's what makes pediatric medicine so difficult - according to my cousin the FP Doc.

Do you feel like your neice's life is a episode of "House" and you want it wrapped up at the end of the hour?

---

yes! We need to find a House Dr. And believe it or not. We just found out there was an episode just this past christmas Called Merry Little Christmas that was about a littel girl who was hard to figure out and she had what we thought my niece had! But sadly now it is not we think. The final test has not come back yet. But they are pretty sure about it.
The baby is doing good this morning. She is eating and being a butt! All good signs at this point.

Well... still holding you all in my thoughts...
Great news that she is feeling bouncy after the ops and is eating
Children are remarkably resilient
AwhiAwhi to you all

Ok they are heading home!
Thank goodness, ,my sister called me today crying her eye's out. She was just so frustrated with everything. By the time we got off the phone I had brought her back down to earth. She got set off becuase the baby didn't want to eat good food. She wanted junk food. Well kinda chocolate milk and strawberries. But the Dr was saying how she needs to eat more protien cause of how skinny she is etc....
Well my sister was struggling trying to get her to eat eggs and other things. The baby would hold the same bite of food in her mouth for like an hour at a time. The baby eats anything and everything. Except for today. And my sister was taking it to to heart. So I told her to have the baby spit out the food. Give her her peanut butter crackers, turn the tv back on and breath. Took a bit to get her to that but once she did my sister felt better. And then the baby went to sleep. probably tired from holding the food in her mouth. Anyway they are going home. With again no answers but I guess they are going to put the baby on steroids (yuck) and monitor her. Do another ultra sound in a few weeks etc....Boy what a ride this has been!
Going to a birthday party tonight I am going to just have a good time!
Thank you everyone for just listening. I would like to stop writing in this post!

Brandi,

Enjoy the birthday party - taking care of you is important too.

Way back when, my little sister had a severe bout with Valley Fever (a wind borne fungus common in the central valley of California and Arizona for those of you who haven't heard of it. You can have cold/flu like symptoms or become severely ill, or die. Most people who've lived in AZ or CA for at least 10 years have probably had it. End of brief)

Anyway, when Aly was sick - and she was very very sick - her doctor had us make whole milk, full cream-ice cream milk shakes. We'd add a banana, honey, and a raw whole egg (when she wasn't looking) to the blend. Instead of an egg, maybe add protein powder. Milk shakes appealed to Sis, and the doc said add the calories. She was also on prescription vitamins, and being treated for malnutrition - not from our lack of care, but because of the illness. That's when I found out that malnourished children hallucinate. I never saw a child be as skinny as she was, with a pudgy belly. - Advance to the future - she's now the mother of 3 kids (15, 5, and 4 mo).

So maybe a milk shake would appeal to your neice - then add nutritious goodies to the blender.

Just a thought.

All I can send is positive thoughts... here they come...