We're home!!

We got home about 2 hours ago, and she's already playing the Wii! She's really doing well when she's up and awake. I'm about to make some dinner here in a bit. But just wanted to at least let everyone know that we're home! We have many follow-up visits, she's on an oral steroid and antibiotics still, and still more testing in the future. But we just have to get her better from this illness first.

It looks like we're going home today

It appears that we may be getting discharged today. No real answers on things yet, of course, but we have more appointments that we'll need to follow up with anyway. I'll update more when I get a chance, just wanted to post that!

Off to sleep soon...

I'm about done for the night, and off to bed. Nothing else has really changed with Peanut today. We had a student nurse in there today though. It was slightly annoying, she has a really heavy accent, somewhat lack of English, but I can tell she's brand new! And having done a job in the public service world, I know how hard it is to start off. It's scary, unnerving, and very overwhelming. So, I'm not going to worry about it too much.

She also had a girl come in and do music therapy. It was nice, except Peanut didn't like any of the hand held instruments she brought in, wants her own instrument at home, and doesn't stop talking long enough to listen to things. She really does beat to her own drum. But it was a nice little break. She also took a nap this afternoon and was off oxygen for about 1/2 of it. Eventually I had to put her on oxygen, but like 2-3 liters, she was dropping into the 80's. But still, not too bad.

When I left there, her and Daddy were settling in the watch Cars. Then she would be getting all her breathing treatments around 9, and off to sleep. So, when I talked to hubby around 9:45, he said she'd been fine, sleeping for about 30 minutes. Hopefully there will not be a repeat of last night's issues. Although I did tell him that he should bring up his concerns with the nursing supervisor. A friend of mine told me about all of that. Plus, we usually have someone from admin, higher up, stop in to see how things have been, so if they do, we'll voice our concerns then.

Anyway, I reallllllyyyy....... hope we're coming home soon! I honestly never expected it to be this long when we went in there last Friday night!!

If I could....

I would! I would tell Dr. G. to just to stay the hell outta here!! We've pretty much determined that there's nothing else endocrine related that they're planning, so I'm not sure why she comes in here. She asks if there's anything new, uh, NO! We have nothing to share with you! Then she wants to listen to Peanut's breathing, and make a comment about how it sounds, then that's about it. Today when she came in she actually asked why she was in isolation?!?!?! She asked if it was RSV!?!?! Are you kidding me??? She's been in isolation since she got here!! It's been on her door, every room, mask & gown needed. I'm assuming it's due to the pneumonia and other viruses she's got going on. But either way, how do you not know that!!??

Now, as I said, I wish I could, and I'm sure some people would tell her to shove off. But I just don't want to burn any bridges. It's easier to just be polite, and then have her leave. But it certainly isn't always easy!!

The latest - the good, the bad, and the ehhh...

OK, so I just got here and hubby left. Apparently it was a bad night! She was tossing and turning a lot, lots of alarms going off on her machines, her BiPap came undone, all sorts of things. And hubby said that the nurses never came in, not once!! He had to go out there to get the nurses! He was extremely pissed off!! I mean, there's a reason these machines have alarms, and they're hooked to the nurses station. And especially since it went off multiple times throughout the night. He also had to change her pull-up 5 times during the night.

Now, as for today, she's had her lab work done, CT scan done, and IV taken out. As long as she drinks water through the day, she can keep the IV out. That's good since it's in her right arm, and that's her coloring arm. She had a few things done with the CT scan too, I'm assuming contrast done, since they had to put something into her IV that made her feel warm.

She's sitting up in the chair again too, on room air, staying good. She looks better too. Although she's coughing more, but the docs said that's a good thing. It's a wet cough, and she's getting a lot of that gunk out of her chest.

Then, about 20 minutes ago, Dr. S., one of the peds, came in. She said she looked a lot better too, and the coughing thing being good. She's been talking with Dr. A. about trying her on Xopenex, it's a pure form of Albuterol. She said that sometimes the pure form can help really open things up. So they're going to try it for 24 hours, and see if it makes any difference. She said it's so much more expensive than Albuterol, but for some kids they use it since it makes them less jittery. But that's not Peanut's problem, they just want to see if the pure form will help her open more.

The other thing is that the nuerologist wants her now to see an nuerophthamalogist. And of course, those are even more rare! LOL! But there are a couple around here. So, that's going to be something else. No idea when/where that will happen, but Dr. S. said that's what Dr. I. wants to do. I'm assuming they'll still want to do the MRI of her brain stem and all that though too.

No word on what the CT scan showed yet, obviously. All I know is that we're pretty much tired of being in this room! But Nutty Buddy is doing well at G&G's. I saw him this morning. He's got a cough thing going, so I picked up some medicine for him. But he was playing, doing all sorts of things there, keeping them busy. But they wear him out every day, so he's been going to bed around 9:30 every night! He's asked when he'll be coming home, but hasn't been too bad about it. I even brought some tulips from Grandma's garden up to Peanut's room. It makes it look a little brighter.

I think that's it for now... when there's more info, I'll write again! Thanks for all the email, comments, etc...

Last one for tonight

Just checking in before I go to bed... So Peanut's with Daddy again tonight. And in the morning, I have to bring some more clothes to Nutty Buddy, so I'll get to see him for a little bit. I know he's doing good, having fun with G&G, but it's still not his home.

She was doing fine when I left. Still on room air, but she knows her numbers, so she knows when she needs to kick in her breathing. They also checked her IV cuz it was leaking, but it was still in, so they just readjusted it, and put all new tape on it.

I know for tomorrow she has some labs scheduled, but I'm not sure what for. I told hubby to ask when they come. It may just be too check the levels with all the meds she's had. Don't believe it's going to be any certain medical tests. She's got so many meds going through her, I would think it would skew most test results, but who knows. She also has her CT Scan scheduled for tomorrow too. We'll see what that shows. I know there's something they want to see. And area in her chest cavity that they can't see in the x-ray, some sort of open area, something like that, I'm not even sure. So we'll see what that brings.

On one good, totally off-topic, note, the Cubs are kicking some D-back butt!!! She'll be happy to hear that tomorrow. She hasn't been able to see any games the past few days. They're night ones, or she fell asleep, but she still wants to know. In fact, it's now 10-1!!!

We've moved to a regular room!

So once again, we're moving further in the right direction. We've moved into a regular peds room now. She's still on room air too, so that's good. And her numbers continue to stay in the 90's, which is really good! She had a nice lunch and is certainly happy that she gets to eat.

I went down to see her peds office too. Since the one nurse there has been trying to work with one of the other peds to get us an earlier 2nd opinion endo appointment. So I wanted to let her know that they didn't need to push for that anymore, at least not right now, since we were here in the hospital. So Nurse S. was saying that she just doesn't understand why only a couple docs think that things are OK and we can wait. But she was trying to get Dr. C. to advocate for us. Of course, Dr. C. didn't want to step on Dr. B.'s toes either. Well, that doesn't matter too much now, since it appears that we're moving more towards a neurological issue, not an endicrine one. However, she's also going to have us put under Dr. C.'s care, not Dr. B.'s, since he's the one who has done nothing for us. And she even said that Dr. C. is much more like the ped. we used to see, up until she moved last year.

This will be a good thing then, since Dr. B. has been worthless to us. He's not an advocate for us, he's mostly dismissed it as being food & calories, and having her dad's stature. Which honestly, if that was the case, she would have to lose at least a couple of pounds then, since we've been working so hard on her diet.

Anyway, her favorite craft girl C. is here! Well, she went to go get some more stuff, but she's around today. So that takes a little stress off me......

Just saw her endocrinologist

Dr. G. came in to see her and once again reiterated how she doesn't get the weight gain, but certainly doesn't think that it's an eating issue. I swear, every time she comes into the room, I can feel my body tense up! I'm so aggravated with her, I just don't want her to talk to us! But, I'm not one to burn my bridges either. So, I tolerate her, listen to her, then just dismiss her. She's not really telling us anything we didn't already know, nor is she doing anything for us, so there's no real reason for her to be involved. But again, she is the only peds. endo., so she is working with the other docs.

Dr. A. just came in as well. He said she sounds much better. So he's cutting back her Prednisone and her nebulizer treatments as well. He said as long as she's doing OK on the room air and sounding so much better, then we can cut back on those things. Then we'll see how she does in the next 24 hours.

Back at the hospital for day shift

Last night was a good night finally!! Daddy got about 8 hours of sleep, so he just called and said he's going to do some house work then. Peanut is still wanting more and more, as usual. But she slept well, no dropping numbers, and she's up on the sofa right now. And, she's off the oxygen!! She's hanging right around 90, so they're letting her stay off it for now. But if she drops too far, then she'll have to go back on it.

As of now, the different doctors have been consulting and really don't think there's anything endocrine related. Dr. I., the neurologist came in to see her this morning too. She was scheduled for an appointment with him on Thursday. Anyway, they want to do an MRI of her brain stem, plus the hypothalamus, because they want to see if there's something wrong with that. Although some of the things they have a hard time finding ways to see what's going on. They're also going to do a CT scan of her chest, lungs, and tracheae. The x-rays don't always show the best images, so they want to do a CT scan.

Right now she's just continuing to argue with us about what to do. She wants to color and draw, but her IV is on her right hand, so it's difficult. But she's just going on and on, complaining about what to do. Poor girl in her from Child Life, just has to listen to her whining and arguing with me! It's really aggravating!!

So, we're just waiting to hear when they're going to do the CT scan. But the MRI they won't most likely do until she's out of the hospital. They want her to be much more healthy before they do those tests. She's finally settling down a bit now too. In her standard way, she's totally angry one second, and happy the next! And we're watching a movie now!

I'm home for the night

Daddy's with Peanut for the night, and hopefully it'll be a quiet one. She fell asleep around 7:15, while on just the oxygen, not BiPap, and while her numbers stayed good, she sounded horrible. The PICU resident came to listen, respiratory listened, and the nurse listened. They decided to give her another nebulizer, some different kind though. After that, we woke her up to get her ready for bed. Much to our unpleasant surprise, she'd had a very large accident while she was asleep! =( Poor baby!! So we got her cleaned up, I'm sooo... thankful for great nurses!!! And then she got back in a clean bed with her PJ's on for the night. I put in a My Little Pony movie for her, and she was dozing off a bit. But she was awake when Daddy got there. They're also going to give her the Orapred tonight too.

She really enjoyed having some pizza for dinner finally! She was pretty happy to get some food, after not eating for about 36 hours. Plus all those drugs she's been getting! I can only imagine. And she's all excited about ordering French Toast sticks for breakfast tomorrow! She said her and Daddy had breakfast plans.

I had also been looking for a stuffed, black bear for her. Well, talking to G&G today, they were with Nutty Buddy at the zoo. So when my dad asked me where I was at, I said I had walked over to the Hallmark store to look for a bear. He offered to look at the zoo store then, and of course, they had a great one. So he had to come up to get a couple things from me, and brought her the nice surprise. So she was happy to get that as well. No name for the animal yet, Blackie & Blackbeary were suggested! I liked Blackbeary! LOL! She had her bear on her bed with her when I left tonight.

I'm just watching the Hawks game right now, flipping on the Cubs occasionally, but the Hawks are more exciting for sure! I'm a little hungry too, but I'm so sick of crap food. So nothing sounds appealing right now.

This is certainly going to be my daily outlet for awhile. I need someplace to get all this stuff out. And it's easier than typing things 4-5 times to write it in different places. But please feel free to leave comments, suggestions, or advice. And hopefully soon, I'll be able to say that we're home and one day, that we have an answer!!

We're moving in the right direction finally!

At least when it comes to her respiratory issues, we're getting better. We thought she was going to have to go back to PICU last night, but she didn't. So she's still in PIC, which is a good thing. And she's finally off the BiPap when she's awake. But she's still on 8 liters of oxygen. They're working on bringing that down, but slowly.

Today we've seen Dr. B., a geneticist, Dr. G., her endocrinologist, a dietitian, her pulminologist Dr. A., and the regular peds doc on the floor. They're also going to see if the neurologist that she's scheduled to see on Thursday will just come over and see her in the room instead. Plus the constant parade of nurses, respiratory, and other people.

Anyway, so Dr. B. said that as of right now, nothing is jumping right out at her. But she's going to think about things more. They did do a blood draw for a variety of things, but nothing so far. And she explained that genetics is so vast and unknown. There's so many things they don't know yet. They really have so many things to look at, but they will. She did tell us that we shouldn't expect to have any answers when we leave here. But at least she's looking at her.

Then Dr. G. came and it took all I had to not go off on this woman! After doing minimal testing and telling us that it was environmental a month ago, she comes in here and tells me that this is definitely NOT due to overeating! Well no kidding!! We've pretty much thought that all along. But she's the one who had mostly dismissed us, telling us to come back in 6 months. And while I'm so not happy with her, she's the doc we've got here right now. So I'm stepping carefully. She said that she was going to consider more options. No idea what, but she's thinking more.

The dietitian also came, but there wasn't anything else she could offer. I explained that we've seen them before. She asked me a bunch of the same type of questions, and like everyone else, said it doesn't sound like this is anything related to food/calories. The only thing she did say was to NOT decrease her calories anymore. If she's getting 1100-1300 calories/day, that's fine, but no less. She still needs calories for just daily activites. She said to just try to continue increasing her activites.

So, she fell asleep about 20 minutes ago here, and she's not on her BiPap. She was working on something and just doozed off. But she's still on the oxygen, and at least her numbers are doing OK. I'm gonna have to wake her up in a bit though to get her ready for bed, and she'll need her Orapred tonight. But the nurse is calling the resident to come and listen to her. She sounds like crap honestly, but the fact that her numbers are staying OK, I'm not as concerned.

Not too much else to say at this point... Daddy's coming in for the night shift in awhile. We have no idea how long we're going to be here once again. I don't expect before Wednesday. And really, who ever knows?!?

Her current vitals

This is how she is right now, on 13 l. of oxygen!!! Sooo... not good!! Her heart rate is still in the 150's! But at least her O2 is at 100. Again though, she's on so much oxygen, it damn well better be!

Now in the PICU

Just wanted to update - last night when I was still here, Peanut was kind of crashing, at least respiratory wise, her heart rate is in the 140-150 range, and she's now on her Bipap (sleep apnea) machine during the day as well. They've done 2 chest x-rays, an echo cardiogram, EKG, multiple meds, all trying to get her chest cleared up.

So, last night/early this morning, after she was in such respiratory distress, they brought her over to PICU. She's currently getting terbutaline, and not sure what else. Daddy had the night shift, so he was here for all of that. But he's at home now, getting some sleep.

Now, the one good thing with all of this is that there are more doctors who are also of the belief that there's more going on here then just calories. And the one doctor working here in PICU is looking to go into endocrinology, so she's extremely interested in Peanut! Which as I said to her, that's great! She even is getting us the name of a new ped. endo. that just joined another hospital. She's supposed to be really good.

I will say that we get the best care in PICU! I love being here mostly cuz of the high attention she receives. But they also seem to just want to know more.

As of now she's gotten magnesium and is on a drip with terbutaline. I seem to always say that I hope this time she's going to get her some help and answers. I'm encouraged by this dr. that is so interested in her. She's sleeping again right now. She did get up though, went to the bathroom, got dressed, cleaned up a bit, just a little bit of moving around. But being off her machine for a few minutes and her O2 sats were in the 60's!

This is even worse than the last time cuz her heart rate is just so high. And they're not letting her eat cuz they need her lungs to be better. Poor kid just wants something! And not even water!!

I'll update more as we go along!

First time blogging from the hospital!

After writing about Peanut last night, we got too concerned about her health. After chatting with my friend, she said to take her to the ER, suspecting pneumonia. Sure enough, that's what she has. She's being treated for that, given orapred and zithromax for the illness. Her temp was 102 last night, and it's been up and down today. She's had a chest x-ray (in the ER) and then an EKG & echo cardiogram today. Her heart rate has still been fairly high, but her O2 sats seem to stay fairly decent. Then again, she's been on oxygen all day.

It's been a long day here yet again. Wasn't totally sure if we'd be admitted when we came in last night. But I did bring my few things to keep me somewhat sane. But being inside this building since 11:30 last night is starting to take its toll on me. I really need some decent, real food. Hopefully hubby's coming up after work to take tonight's shift. And brother is at G&G's, so that really helps!

We've watched 3 movies so far, got about 4 hours of sleep, saw the Cubs game, and did a little crafting. It's just so hard to watch your child struggle to breath! She was telling me she wasn't tired a bit ago, but she's barely staying awake. And just arguing about putting her oxygen tube back on. She wont' do it herself, wants everything done for her. Ugh!!

So, I guess I need to get her butt out of the chair, hit the potty and then get ready for bed. I want to sleep too!

Oh, and as far as treatment, the doctor we saw today also believes that there's more going on, not just environment. So she's having a geneticist come to see us on Monday. We'll be here at least until then. So maybe they will finally do some testing to see what the hell is going on!!

I'm really lost as what to do with my daughter's health

Well, since I haven't written much on here really, why not delve into this topic! My DD is 5 1/2 years old, and is about 70 lbs. She has gained about 40 lbs. in the past 2 years. We've been seeing numerous doctors, she's been hospitalized twice, has sleep apnea, is on BiPap to sleep, had her tonsils/adenoids removed, deals with asthma, takes meds for that, has vision problems, possible neurological issues, and yet nobody has been able to find anything wrong with her.

We've been told by the endocrinologist that it must be environmental, since the testing for Cushing's syndrome came back negative. But she's not tested for anything else. Keep in mind, she has a twin brother who is a bit more active, although eats a little bit more, and is barely 40 lbs. Yet they want us to cut back on her food, restrict her diet, and get her more active. So, we've been doing those things, trying to work on things, and she continues to gain. She hasn't lost a single ounce! Nothing!!

Instead, she's continued to gain and they want us to keep trying, even though they're "concerned about this continued weight gain." Well, no shit!! We're concerned too!! Why do you think that we keep asking for help?!?! Yet, cuz of the red tape of HMO's, medical groups, and lack of flexibility, we can't get in to see another endocrinologist for almost 4 more months! Yes, there's another one who can see her next week, but it won't be approved.

I know we can pay out of pocket, but we have insurance, we have been asking for help, we've been working with her. So why should we have to pay $1,000's of dollars to get our child help!?!? Why is it so hard to look at her and say "Yes, there's more tests we can do!"

I wanted to put this out there to start getting ideas and possible suggestions. I decided to start this blog for that reason as well. And it's come to this point tonight cuz of her breathing struggles again tonight. Just sitting up, not doing anything, her O2 levels are in the lower 80's, with a heart rate around 130-150's. And when she's sleeping her O2 will stabilize at 98-100, but it's because she's on oxygen. But her heart rate is still 120-140!!

I just want my peanut to be able to enjoy life!! She's 5 years old, she should be able to sit on the sofa without me hearing her breathing from the other room. I'm afraid of what will happen one day. I'm terrified of her heart giving out, something fatal happening. I want someone to help us, and help her. Or at least tell me that there is nothing wrong with her, it's us, and we just have to completely stop her eating, whatever. I spend hours researching possible things, but I have no idea what it could be.

I guess I should wrap this up for tonight... it only depresses me even more. I want my healthy, happy, playful peanut back!!

First entry

OK, I have no idea what I'll say on here, but I need to do something to get my creativity going again! I want a place to start working on my photography more, share with more, and find an outlet for my regular life. I stay at home with our 5 1/2 year old twins, so life is a bit crazy at times. There's highs & lows, joys & sorrows, but it's all an amazing ride!

I'm also trying to further my photography skills. I currently have a Flickr page, which has kept me pretty active. But I need to find something to channel that in to. Just taking photos, posting them there, sharing with friends, and playing challenge groups isn't enough anymore. I want to work on turning this into a little bit less of a hobby and more of a part-time job.

I will try to share some photos, tell funny stories of my everyday life, and learn from many others!

TCC