We've had a lot going on

I know I haven't updated in a few days, but there's been a lot going on. First off, Peanut's eating!!! On Friday the ST came in to do a swallowing test. She passed it with more than flying colors. She ate an entire bagel, graham crackers, pudding, and applesauce. She exceeded her ST's expectations. So she moved onto a soft diet for the weekend. However, she's beyond that now, eating cookies, pizza, sandwiches, etc... I mean, she didn't eat for 2 weeks!

Then today, she finally has a lot of her voice back. Well, she's speaking. It's not really "her" voice! LOL! It's a little squeaky at times, and some words get lost or too soft to hear, but you can understand about 80% of what she's saying. She's just moving so fast. It's great to hear her! And so many of the nurses her never had her before, so they don't really know her, the REAL her!! They are getting to see that now and love it!

Now, thenot so good things... We're still having problems getting the fluid out of her lungs. They had toincrease her lasiks again today. But we're trying to get her up and moving a little bit more. She's sitting up in a chair all day too, so that helps. She's not just laying in bed, where it's so easy to fall asleep.

The other issue is her apnea. We're starting to believe more and more that it's a central cause. There's obstructive sleep apnea and central. The obstructive is caused by something in the airway, weight, narrow airway, things like that. However, thecentral apnea is something nuerological. Last night, she would close her eyes and within a few seconds, she was crashing. I wasn't here, hubby was. But he said that once she actually went to sleep, it was a perfect night. No crashing, no alarms, all great. So why she crashes in the middle of something, when she just closes her eyes for a few seconds, that's what we don't understand. And since they've removed any airway obstruction, by having the trach as her primary airway now, it should help with that.

She's also been on the vent all the time now too. They had too many problems with the C-Pap, the backup vent, and things like that, so she's just now on the vent, but with low settings. Which is fine, although she may end up going home on the vent too. We'll work with that when the time comes.

We're also still working on getting the home health care lined up. Apparently, they told hubby today that they will have to come out to the house, check the facilities, possibly do some electrical work, just crazy!! I couldn't believe that all of this is going to have to happen. And they also said that if they can't get her nursing care for at home, they would possibly move her to a nursing type facility. That thought doesn't thrill me at all, too many other issues in that environment. But, we'll see when that time comes.

Nutty Buddy is doing a little better. He's been going to school this week. Of course, he still cries going every time, but his teaher said he recovers within a little bit, and has good days. He still has issues with lunchtime and the lunchroom, so I think I will just send more of a snack thing for him to eat. Since they have lunch at 10:30, which is kind of early. Then he can have a lunch when he gets home.

Soo... we're just winding down for the night. Watching Mulan, which I had never seen. She got her hair braided today, and her nails done too! Purple and green nails! LOL! But so cute!! She just looks so much better. Even though there's still so much to take care. It's not easy too. The days seem to be longer, more difficult, and more demanding, with no end in sight. Not what I really envisioned for our little Peanut! But she's such a fighter!!

Continuing on the path to improving!

It's been a good couple of days!! Yesterday, they continued to wean her off of the ventilator, putting her on C-Pap for longer stretches. They also changed her trach to a little smaller. It's still may not be the perfect size for her, but they have to take things slowly and see what's going to work best. And then they put her on C-Pap for last night too, which she tolerated really well. So today, they took her off that completely! She has a trach collar which just is like a really small oxygen mask that sits in front of the trach opening, giving her a boost of oxygen. This is a big step because then she's not on the ventilator at all right now. This means she can move around a little bit more too.

We gave her a full washing today, including her hair, which was a birds nest! It was nasty!! It hadn't been washed in about 10 days! Poor kid! But it's much better now. She looks so much better too. Plus she's out of isolation! They rechecked her for the different viruses she had, and all clear! Which is really nice. The staff doesn't have to wear gowns, masks, and gloves everytime they come in.

I have to say, this little Peanut is truly one of the strongest kids I've ever known! And I don't mean physically exactly. She just handles everything so well, it's amazing! All the nurses and doctors enjoy her cuz she's just such a trooper with everything. They comment all the time that they can't believe how well she handles it all.

And Nutty Buddy has had a few rough days himself. It's a lot for any 6 year old to take in, so it's understandable! And he's trying to do it, but it's not easy. I had to pick him up from school yesterday, about 30 minutes after I dropped him off. He was just hysterical, wanting me. So I picked him up and spent some time with me. He didn't want to leave with Daddy though, but he finally did. They ended up going out to see hubby's family in the afternoon.

But, on their way, they saw some fire trucks at one of the forest preserve ponds. So they stopped and walked over to see what they were doing. They were doing some diving practice, so of course, Buddy had to talk to them. Then, the firemen let him talk to the diver and give him his directions to come back up to the surface. He was just thrilled over this! It made this little boy's day so much!!! I was so happy to hear that. Today he went with G&G to the Museum of Science and Industry. They have a LEGO exhibit there, so he was excited to see that. I'll get him tonight after dinner at their house.

Anyway... Peanut's getting a chest CT scan later today. They want to keep checking the pneumonia and everything else I guess. She's napping right now... but she's going to be getting the IV for her CT scan soon, so that may wake her up.

That's about it for now!!

Really making progress on various fronts!!

Today was a busy day! First off, Peanut was awake the entire day, no naps, no major desats, no real incidents at all. She was trying really hard to talk again. She's getting very tiny, little whisper type sounds out when she's really excited and trying to tell us something. Tonight I got her to draw out what she wanted, and it was so cute. She drew a rectangle, with an arrow pointing down, under water. Then she wrote GO F... She wants me to bring Go Fish cards!! Her alarms kept going off cuz her heartrate was going so high, as well as her resps. cuz she was so excited!!

Then, we saw A. today. She was her speech therapist when she was a toddler. I spoke with her last week about what we'd get. Today they officially ordered ST, OT, and PT for her, so then she could officially be on her case. She brought a sample picture/word book that they use. Then she uses that to get an idea on picture sizes, level of understanding, things like that. And they will make one for her to use. She also said that she's going to tell them to hold off on OT & PT since she's not ambulatory yet. They can't do what they need to do, until she's off the vent and moving.

What else... Oh yeah, we heard more from CMH today!! Dr. W.'s office called and talked to me for a good 20 minutes. They're getting a little bit of the paperwork so far, and she gave me what she needs yet from me, and the genetic testing is going to be done while Peanut's in now. And, the best part is that they have us penciled in for November 1st!! She had a slot open up, so we wouldn't have to wait until February!! She gave me all the basic info on how it works, and it sounds just amazing the assessment they'll do on her there. She is constantly monitored, except for the short times when she'll be in her bedroom to clean up and eat. It's an open area where they will play and do things all day. I really hope that this provides some answers for us. I'm just so excited that a much earlier appointment for her. This was so unexpected.

Overall, Peanut had a really good day! She just looked so much better all around. As of right now, she's scheduled to have her trach changed on Thursday. We're still not sure if they're going to downsize or not, but we hope that they can, so then she can work on her voice again. With as much as she's trying to communicate, I have a strong feeling that once the mechanics are made so that she CAN, she WILL! LOL!

And Nutty Buddy is doing OK too. I think he might be showing some small signs of neglect though. I mean he acts up a little bit, although maybe not anymore than normal. A lot of whining, wanting to spend time with me, or Daddy. He doesn't want to go to school pretty much everyday either. He tells me that the lunch room makes him feel like he's going to throw up. Now, he did have Sensory Integration Disorder, diagnosed at age 2. So I'm starting to wonder if those issues are creeping up again a little bit. He said it's really loud and gives him a headache. I also asked him about the smell, and he said yes, it bothers him. I don't like to dismiss it, but I don't want to give in on something that's not really there. He said that he ate lunch in the classroom today, with his teacher. So I'll have to talk to her about that tomorrow morning.

Anyway... I think that's it for today. It's definitely been one of the better days!

It's been a pretty quiet day

There hasn't been much going on today. Peanut had her Aunt, Uncle, and cousin visit, plus G&G R. today. Got more balloons, colorings stuff, and a little Boyd's bear named Betsy. I guess she was awake a lot last night, wanting to "talk" to daddy. So he was up quite a bit with her during the night. And I guess it tuckered her out! LOL! She's been sleeping for the past 3 hours or so. Even when her nurse and I just bathed her, changed her, cleaned her all up, and she didn't wake up all that much.

They're still working towards getting her off the vent. Today, they put her on C-Pap, instead of the actual vent. This means that she breaths on her own, but if she stops, or slows down, the machine kicks in for her. And she tolerated 4 hours on that just fine. They're doing 4 hours on C-Pap and 4 hours on vent. And then tomorrow, they may increase that to 6 and 6, or maybe even 8 and 8. And this is the last step to getting her off the vent.

While I've been here today with her, she's been sleeping as I said. But she was dreaming too! It was so cute! She was laughing and smiling, moving her arms all over, obviously really happy with whatever she was dreaming about. And while she can't exactly laugh out loud, she was trying. It was really great! Her nuerologist likes to see that too!

Tomorrow will be more I'm sure. Being the weekend, this is the slow, quiet time around here. But I'm sure other doctors will stop in tomorrow. Thanks for all the visitors again too! It's great to see everyone, and she really does enjoy it. She's giving little kisses and big hugs!

Some small, good updates!

Today was a long day as Peanut was in and out of sedation. And she was happy to have the tube out of her mouth, but got frustrated at not being able to talk. She did a lot of pointing and head nodding, but it's really hard not knowing what she wants. She did try several times to talk, her mouth would move a little bit, but we have to keep telling her that's going to take time.

Then, when hubby got there, with Nutty Buddy, she started to get a little more awake. So, there's a 6 month old baby boy next to her that cries all the time. There isn't much family that comes around, and he wants to be held all the time, which the nurses can't do. So they had him in a swing, and Buddy was showing him the two stuffed puppies he has, goofing around, and really keeping this little boy entertained. All the nurses were just fawning over it!

So, in the room we were laughing about it, telling Peanut about it, and she actually smiled about it. She also made a hand motion, like "Oh, that boy, he's such a goof!" It was the first time that she really showed any sign of emotions, and happy ones at that. Then she was doing her demanding with hand pointing when hubby was getting a computer program set up for her.

I was getting ready to leave with Buddy and she was able to give hubby and me a kiss on the cheek. She's giving a slight hug too, but the little kiss was just awesome! She smiled a few times, even tried to laugh a little bit. And when her day nurse left, she blew her a kiss. It was really great to see her with a little bit of happiness in her face. I know she's sad, angry, frustrated, and confused about everything going on, I can only imagine how hard this is for her.

We're going to work on getting her off the vent this weekend, they've been reducing her settings slowly. They will have to do some more stuff next week, but we'll deal with that then. Thanks to those who have visited, sent cards, and other gifts! She knows that she is loved by so many people!

Surgery is done!!

The surgery is done, it took about 2 hours. Dr. W. said that her airway is almost completely collapsed. There's also a small growth in there, but he said it could very possible be scar tissue from when they intubated her. Or it could be just extra tissue. Either way, in a week or so, they'll got back in and see if it's shrunk, and then maybe laser it off. Everything else went fine. The trach is in, they may have to order a special sized tube for her though, child one was too small and adult one is too big, but it's working.

She's still sleeping for the most part, on sedatives, and they're restarting her feeding now too. She's getting antibiotics and pain meds as well. It's so wonderful to see her without the tube in her mouth though. I've seen her moving her mouth a few times though, as it probably feels good to her too. She had that in for almost 7 whole days.

We did have some visitors today too!! Hubby's Commander, his secretary, and his Sergeant all were in the waiting area when we came back up to her room after she was back from surgery. They brought her stuffed animals and flowers. And reminded us again that if we needed anything, to just let them know what they could do. It's been such a blessing to have him working in a place where they're so supportive. My friend Kathy also stopped by. It was nice to have someone to talk to for awhile too. She brought Peanut a stuffed puppy, little drawing thing, and a Get Well balloon.

As for now, she's still on the vent through her trach. They hope that through the weekend they'll be able to wean her off of that. She's not going to be able to talk for awhile either. And for those that know her, this is going to be extremely difficult. We're all going to need a LOT of patience to get through these next weeks and months. But hopefully, with time, she'll regain use of those muscles, her airway will open enough, and she can regain a strong use of her voice.

I think that's it for now... If anything else comes up, I will update, but I'm sure it's going to be pretty slow and quiet for another day or two.

So far, status quo...

Everything is still set for 7:100 .m. tomorrow morning. They'll do the bronchoscopy first, then the trach if necessary. As we said before, we can't imagine that there's anything else in there, but they'll check. It should last for a few hours, no real estimate yet. We will certainly update as soon as it's over.

Dr. A. told me that after the surgery, she's going to come out of sedation, and be more awake than she has been. So she's going to have questions that she won't be able to ask. He said to make sure that Peanut realizes this is NOT a punishment, that she didn't do anything wrong, that this is for her safety and to help her breath better. She's a smart girl, so I hope that she understands that.

In other somewhat good news, the case manager here finally got a hold of the HMO to discuss what benefits we are eligible for, regarding home health care. She just stopped in and said from what they've told her, as long as there is a definite reason for it, then she'll be able to have a home nurse. She said it could be anywhere from 8-16 hours/day. I don't know if I'd want here there for 16 hours/day, but at nighttime it could really help. Plus, she's also asked them to assign an insurance case manager to us, from the HMO. I had asked for this months ago, but they said that parents/patients usually didn't request it, the doctors, hospital, or insurance company would ask for one. So, that might help with some of the red tape.

Other than that, she's been a little more coherent again today. She has her 3 little stuffed animals on her chest. I bought her a couple of balloons with a little teddy bear they tied on, so she's got that, plus her Blackberry bear, and her favorite Nurse Kathy from Dr. A.'s office gave her a little stuffed turtle. So she has a little comfort and company.

I don't plan on anymore updates until we head into surgery tomorrow...

Not much has changed...

Peanut has pretty much stayed the same between yesterday and today. She had a little fluid in her lungs again today, so they gave her some drugs to help her drain it all out. She hasn't had any temp though, so that's good. They're still scheduled for surgery on Friday morning, at 7:00 a.m. She was on the lower dosage of sedative too, so she's a little more coherent at times. She will try to motion what she wants, but that's really hard. She can shake her head though, so that helps a little bit. And when I fixed her Blackberry stuffed bear, she gave me a thumbs up! =) She also noticed the balloons I bought her. I needed something to brighten up her room with a little color.

Grandma & Grandpa R. came up to visit her today. So she acknowledged them being there too. It was nice to have someone else to talk with for a little bit. Even though Peanut isn't up for visitors, we are!

I came home earlier tonight to take Nutty Buddy to his school's Open House/Book Fair. We really want to keep things as normal as possible for him. He was very excited to show me his classroom, where he sits, the pictures that he's drawn and on the wall, and to just play. I will say that I had to catch myself though, I started crying a little bit. The kids had all drawn a self-portrait to put on their lockers, and our two shared one, so I saw her picture. Plus there was another drawing with a photo of her on it. Just seeing those, with her name on things, it was really rough. Just knowing that she's not going to have the normal kindergarten experience, it really hurts.

Luckily, Nutty Buddy is doing well in school though. His teacher Ms. M. said he does just fine in school, shows no sign of problems regarding all that's going on with his sister, and he's a pleasure to have in class. He's made many friends, of course, that includes the two girls from preschool last year. They get in a little trouble for talking sometimes.

We also went to the Book Fair, where he had picked out a spider book that he wanted. He kept telling us he needed $12 for the book fair. Luckily, while browsing, he found a NASCAR book that had Kyle Busch in it (his favorite!!) and so he was thrilled to buy that instead. And it was only $4! We got a vet book for Peanut too. And each teacher had a wish list with about 10 books that they would like for their classroom, so we bought two of those also. Then they put a little sticker in there to say who it's from. So, while talking to the woman, and I said that Peanut wouldn't be back, she was shocked! She remembered her from the spring open house.

I will say I've been amazed at the number of people who know and remember Peanut! Since she was only in school for 4 days, and we stopped in a few other times, but yet people remember her. She's just so infectious sometimes. Yes, it can be annoying when you're around it a lot, but they just loved her!

I also went to the Children's Resource Library that they have at the hospital. I got a book for hubby and I, plus a video, and then a book for Nutty Buddy to read with him. The woman there gave me some other information, there's a support group too, but he's got to wait another year, it's for older kids. Plus, they have a play room to show kids about certain procedures. She showed me a baby doll they have that has a trach on it. So even though it's a baby, it will give him an idea of what it's going to look like from the outside.

Tomorrow is probably going to be more of the same, nothing much. Just getting prepped for the surgery Friday morning. G&G will be coming up early that day to walk Buddy to school, so I can get to the hospital close to the start of her surgery.

Updates from today

Let's see... her temp stayed down most of the day today. They're still holding off until Friday for the surgery. Her nurse today was just amazing, again! But they all are!! She cleaned her up some, redid her tube, changed the dressing on it, all that stuff. I just can not give enough praise to these nurses. I'm sorry, but doctors have the easy job it seems. She also gave her the blood transfusion, about 400 ml., which she said is about 1 unit. I did ask about us donating to her, but that's not something they can do right then and there. It takes a week or so to get the paperwork in order, but she did assure us that they take so many extreme precautions on blood now.

We got to talk to Dr. A. some more tonight. It helped put hubby at ease too. He talked to some of the nurses last night too. We have realized that although this is the last thing we wanted, her safety must be considered. And this will open up her airway a lot. She should be off BiPap after this too. Since that machine is the one that opens her airway while she's sleeping, the trach tube will be her source of air now. And that is placed underneath the airway there. We know that her lower airway and lungs aren't compromised like her upper airway is. Plus, once we get further along, they'll have it where we can cap it off during the day, so she'll actually breath through her mouth/upper airway like normal.

We honestly have no idea how long she's going to be in the hospital, we're not even going to take any guesses. As the surgery is now scheduled for Friday at 7 a.m., then there's the recovery time. Plus some therapy in a way, to get her used to it. Then hubby and I need be taught how to care for, clean, and change the trach tube. We then have to demonstrate that to the nurses there. They're also getting us information on home nursing care as well, of course, all of that is dependant upon what our insurance covers too. Although she said that there's aid available for that too. They will also give us CPR training and emergency care for her.

It's all a LOT to take in... But we also realize that we just can't wait until they find out what's causing her airway problems. Yes, they're doing the bronchoscopy first, to see if there is possible anything that could be obstructing it further, although it's highly unlikely. So, without anything showing up in that, the trach will be done then. The weight isn't going away anytime quickly, so that won't help things either.

I think that's it for tonight... My parents are back in town and they'll be up tomorrow to see her. I don't think there's going to be much more tomorrow to say, but I'll probably do a little update. Thanks to everyone for all the kind words and thoughts. We do talk to her when she's not agitated and let her know that everyone is thinking of her.

Back at the hospital for the day

I'm back here with Peanut, no real change in her. Her RBC is a little low so she'll be getting a transfusion later today. Plus, there was some more fluid in her lungs, so they put her on a diuretic to help with that, gets her to pee it out. She's a little more awake then yesterday, she will shake her head when you ask her questions and such.

We were going to have the bronchoscopy done tomorrow, but since she's still running a slight fever, they want to wait until Friday. At that time, the bronchoscopy will tell them if there is anything going on in there, or if there are other options. And if not, they will do the tracheostomy then. We realize that this is a major thing, yet at the same time, if this happens again, then what??

We wish there were other options, we don't see any right now though. Yes, the answers to the weight gain would help, but we also realize that whatever this is, it's something unusual, so we can't expect them to have answers yet. I wish we did. And right now, even going to another hospital isn't a real option either.

So, that's where we're at as of right now... just hanging out again today with my little Peanut. And it sucks! There's just no other way to say it, I hate this!!!! Oh, but one piece of better news, she would qualify for a home school teacher to come everyday. While we know that the academics of kindergarten isn't what she needs, still having that connection to school might be good for her.

Unless anything changes, I doubt I will update again today...

We have to make a decision

We just met with Dr. A., her pulminologist. The fact that getting her intubated this time was so difficult, and that they haven't extubated her yet, is troubling. If she has breathing difficulties again, then what? He said we have to ask the "What if?" questions. As in, what if this happens and they can't get her intubated. Then we're in a real emergency situation. So now we have to decide to have them perform a tracheostomy.

This would alleviate a lot of her breathing problems as it basically puts the air into her throat, not through that narrow airway. He even said that it's possible she wouldn't need to be on BiPap with this, just some oxygen maybe. Granted, not that we want to get rid of the BiPap and have this!

Dr. A. explained the risks, which aren't overly large. Yes, infection at the site, and it's an open wound basically. However, the risk of NOT doing it could be much worse, possibly fatal.

OK, doctor's here... more later!

So, a neurology resident had stopped in, then her pediatrician... nothing new, just more checking up. As I said, we're at the point where we have to decide this, and it sucks! But, she just can't get enough oxygen through her airway. So we have to do something to help her with that.

The nurses have all been great as usual. Oneof them came in and braided her hair too. After they did the EEG, washed out the goop, then she did a french braid on each side, it's so cute! And it keeps it out of the way some more. She gets so sweaty and drools a lot, they have to suction her quite often.

We're still working on the paperwork to get her appointment at CMH. We don't see us going there anytime soon though. There's no reason to transport her there either. We're in a great PICU, this is a Children's Hospital too. So, we're staying here for now. We don't know when she'll be extubated, they most likely have to wait until we decide on the tracheostomy.

I think that's it for now... more when we have it!

Update for the end of today

Not much to really update, but here it is... She's been weaned off of the Ketamine and is now on Fentanyl. It's got the pain medicine in there too, to help relieve some of the pain she HAS to be im. She's also been able to sweat out her fever, it was about 101-102 earlier. They do give her Tylenol as needed too. Plus her heart rate and blood pressure came down. When hubby got there, he brought Nutty Buddy up to have dinner, he went into the room to check on her while we were waiting to eat dinner. They were suctioning her out and she was coming out a bit, she fought!! She may be our little Peanut, but she's so damn strong!! Her nurse even commented that if hubby hadn't been there, she's not sure she could have controlled her. They do have the soft restraints on her, since she does get a little lucid at times, so she can't pull her tube out.

Anyway, they're doing what they can to ease her pain, make her comfortable, and just work on making her better. The CT scan did show that there's 1 tooth in her tummy still, but none in her lungs, which would have been bad! Dr. T. thinks that he really did suction the other one out when tubing her. And the one in her tummy will come out in a natural way.

I had taken a little nap before her CT scan too, but apparently her pulminoligist, Dr. A., stopped in. Her nurse told me later she thought he had woken me up, but I'm sure I was sleeping pretty hard. But she overheard him asking the PICU Dr. how quickly she had decompensated, and she told him quite fast.

We really don't know what is going to happen now. There was a mention of a tracheostomy at one point, and they said that a long time ago. I thought they were crazy back then. But now I see how scary this shit is, and I realize why they're thinking this way. It's scary that she started the day with a sore throat and 16 hours later is in the PICU intubated! We're also going to have to see what we're going to do about school. We just don't know if school is going to be a safe environment for her. But then do we keep her home?? Do we teach her here, still send Nutty Buddy? I mean, it's kindergarten, they know all that stuff, but the social things are what she needs.

Soo... we'll see what develops tomorrow. I'm still taking Buddy to school, then I have to go to the dentist, I've cancelled it twice in the past 3-4 months, one of those times was for Peanut's ER trip last month. I will update more tomorrow, hopefully with some answers too!

Back in the hospital, in the PICU

As most people know, we ended up back in the ER on Friday night. She'd started getting a cold and went downhill fast. The ambulance brought her to LGH, and then they tried to get her to breath better, she was struggling so hard. They eventually got her up to the PICU floor, and Dr. T. here told me that they were going to have to intubate. On oxygen or her BiPap, she was not moving enough air in her lungs. She has pneumonia again, and it was all over the lungs. Plus, she had a area where the little air sacks were filled with fluid or mucous, so that was making it worse.

They started to try and intubate her, and after about 25 minutes, I see a doc. and nurse go scurrying over to her room. I ran down the hall and one of the nurses came out to tell me that they were having a hard time getting the tube in, her airway is so small and constricted. They did get it though, but it scared the crap out of me. And the tube they used he said was a little small for her body size, but they couldn't get anything larger in. In the process, they knocked out her two top teeth as well. They were loose to begin with. And they found one in her tummy, but they don't know where the other one is yet. They're still looking.

Once they got that in, they had to x-ray to check for placement, then put in a central line, as well as another IV into her artery. Finally after 3 hours, around 4:30 a.m., I was allowed back into the room. And I crashed hard!!! Luckily, we're in the entirely all new PICU floor, and it's so much nicer, so I did get some sleep.

Yesterday was pretty much a low-activity day. They would suction her mouth out, as well as the tube. There was just so much mucous in her. They also had a tube through her nose into her stomach to drain out all the bile and such there. They collected about 600 cc's from that. In the afternoon they took that out and put in a feeding tube, through her nose, into her stomach. They gave her pediasure through that. She was running a fever of about 102, so they also gave her Tylenol for that. She was getting Ketamine for the sedation and then a baseline series of antibiotics, to treat whatever she has. They still didn't have any cultures back to see exactly what it is.

She's pretty much just been sleeping and resting. Although seeing her on the vent sucks, and I don't like it, her body is able to rest and sleep. She's not trying to color, talk, complain, or whatever. Her body is able to fight and heal.

Of course, all of this leads us to the question of what to do for school?? She may not be able to attend kindergarten. If her immune system is this fragile. I realize nothing says that she got this sick from being at school, but we all know how germy those places are. We're going to have to see what develops from this.

She's having a CT scan later this afternoon, so they stopped her feeding. They are also trying to wean her off the vent, so she does wake up every few hours, when the sedative wears down. But I think they've got her on a drip again, there was Versed, Vancomiacine, and Ketamine, I just don't know which one she's getting right now.

We are holding up OK. Our little Nutty Buddy though, I know this is hard on him. The poor guy said some mean things, but it's just that he doesn't know how to react. It's so hard for him to have to be second with all that's going on. We're trying to keep things normal though. So he'll go to school tomorrow, and do those kinds of things. He did visit her today and saw her. I asked him if he was scared and he did say yes, which is understandable. But we've been explaining things to him as well.

I think that's it for now... I will update later on, when we have more news. Oh, and I finally got a hold of my parents!! They went on a trip to Southern IL, and they were staying in a cabin in some state park, so no phone in the cabin, and no cell phone service! Which means I could NOT get in contact with them. But they've made contact and will try again tonight or tomorrow to call.

Thank you to everyone for all the thoughts, prayers, and messages, they do mean a lot to us!!!