Created another site

I wanted to say more, with a little more privacy, so I've created a Caring Bridge site for Peanut. If you'd like to continue following our journey there, go to http://www.caringbridge.org/visit/kctwins. It's currently set to private. So you'll need to register and log in, then I can add you. I've already added most of the emails I had for our family and friends. I hope you'll check things out over there.

I may lose it soon!!

Well, I’m finally coming close to losing it! I don’t know when, but I can see me getting really frustrated and angry with someone soon. So take this as fair warning. I’m tired of it all! I’m sick of the decisions, lack of information, inability to know what we should do, and trying to maintain some sense of normalcy in the middle of it all.

Last night we realized why Dr. A. and the CAMP team differ. According to her CAMP doctors, we’re supposed to work on this ladder system. When he CO2 goes up too high or down to low, we make vent adjustments. However, we weren’t really told what to do when we reach the end of that ladder. And that happened last night. So when we contacted them, or I should say her nurse did, they didn’t really give much advice. They just pointed out that they’re to be consults to Peanut’s regular pulminologist. The problem being, Dr. A. doesn’t use the ladder system. He doesn’t believe in adjusting the vent for every little issue. And now I’m starting to see why.

Last night her CO2 levels were in the mid-20’s. I’ve always had this backwards, but apparently, it’s more dangerous to not have enough CO2 instead of too much. When you have too much, your body can blow it off and will get rid of it. But your body also needs enough for your brain to function. So if it’s not getting enough, then you’re risking brain damage. This is what we were dealing with last night. So while Dr. A. doesn’t like making the adjustments, he certainly told her nurse to lower her breath rate. Within 15-20 minutes, her CO2 was in the mid to upper-30’s, which is so much better. And even her 02 levels, which initially dropped to lower 90’s, came back to level off in the mid to upper-90’s.

We’re leaving the settings as they are for the weekend now. Since the CAMP team, or at least the one doctor we spoke with, felt that she would be OK like this for the weekend, then they could review things further. Umm… no! I can’t handle the thought of her having possible brain damage, or worse, cuz someone thinks that’s OK.

We’re dealing with two different sets of thoughts and two different protocols. One of them is much more research based, in the hopes of getting more answers to help Peanut, and other kids, further down the road. The other one is based more on real life. That one is trying to look at her quality of life and making sure that she’s not getting into dangerous zones. In fact, Dr. A. told me today that if we wanted to continue using the ladder protocol, which dropped her CO2 levels that low, then he feels that it would be unethical of him to continue advising us on much more. He wouldn’t want to be involved in decisions that could cause serious harm. Of course I can't help but wonder if we need to choose between quality of life and quantity of life!?!?! With no guarantee that we'll have both!

Everyday I think that we’re getting more answers, and instead we’re getting more questions. When we left the CAMP program last week I thought that we were heading in the right direction. And even after our initial issues between them and Dr. A., things were going OK. But now we realize that there’s a lot more that we haven’t thought of. Not only can we risk serious damage, we could end up pushing her body to become completely vent dependent. Since the lungs only need so much pressure in them to work, they work fine when that’s there. But then the vent adds more pressure, which over time creates scar tissue. And eventually, that scar tissue can only be expanded by the pressure from a vent.

So… are we helping her the best way with having her on the vent 24/7 when we know that she CAN breathe on her own? Or are we risking creating a completely vent dependent 8 year old by keeping her on it all the time? We’re really lost with all of this. At times it seems so obvious, and other times, I feel like I’m in the fog.

We’re really hitting the wall here. We thought that having this diagnosis would really be great, that it would send us on a new, and better, path. But we’re finding that’s not really true. We see that there’s just so much more that we don’t know! And we just can’t seem to get any real clear pictures for most of her problems. And it doesn’t help that Hubby and I have had about 30 minutes in the past 10 days to really talk about this. With Nutty Buddy being in and out of school (sick days, days off, weekends), and then since he can’t come to the hospital anymore, we don’t have any more than a few minutes together at the hospital, when we could sit down and talk with the doctors more thoroughly.

It feels as though we’re back to square one on so many things! Ok, maybe square 3, but still, just very little concrete info to work with anymore… So, if I get angry or short with anybody in the coming weeks, just bear with me. The holidays are coming up and my little girl just wants to be in her house for them. As it is, we doubt that she’ll be discharged before Thanksgiving, but she will be given a 1-day pass to be at home for the day to celebrate. Actually, for that Saturday, so hubby’s whole family and my parents will all come to have dinner. But I’m tired of dealing with a lot of this shit! I just want us to be in our house, taking care of her, and working on getting her better. If only we knew how to do that!

Met with our doctors here today

I wanted to give some of the latest info that we're dealing with now. We met with Dr. A. today, Peanut's pulminologist. He actually stopped in to see hubby briefly last night. So today we both talked to him. He had some reservations and concerns about what kind of life we were giving Peanut. Being on a ventilator 24/7 is extremely difficult to care for. It takes a real toll on you, the child, the family, and everyday life.

It's not that he thinks we shouldn't do that. He wants us to be aware of what we're in for. I think he wanted us to know this since we know that Peanut CAN be without a vent. She won't immediately suffer fatal consequences if her vent fails her. There are some kids he treats that this is the case. So he just wanted us to think about things. Especially since the ROHHAD team is doing things mostly as a study. Not that it's experimental or anything like that. But there aren't any real answers yet. We don't have a cause or a cure right now.

But, after talking with him today, he told us that we should certainly follow the CMH team's recommendations. He basically wanted to lift off the burden of us choosing. He didn't want us to struggle between two different medical thoughts. And it's not as though what they're doing for the ROHHAD team is hurting her in any way at all. He just knows that caring for a vented child, 24/7, is very hard on families. Which I totally understand that.

We also talked about the vent we chose when we were at CMH last week. We chose one that we thought would be best. However, we've since learned that most hospitals and pediatric respiratory units don't use it. They use the LTV. So, we've decided to go with that one instead. If something happened while she was on the Newport, and we came into the ER, whether it was here at LGH or at CMH, the staff there would almost certainly not know the Newport. Whereas the LTV is the standard. So knowing that, we knew that we couldn't take that chance.

The days here are becoming longer it seems. We're all getting bored of being in here. Plus she's still in isolation. The tests ate CMH came back negative, but then they wanted to double check here. So hopefully, tomorrow we can be out of isolation. Then we can start taking walks again. She's done hardly anything since getting back here.

I did want to say thank you to Kathy, Marianne, Mike, Nicole, and Joe for all stopping by over the past 3 days. She really loves to have visitors. Even if she doesn't seem like it when you're here, she does like to see new people. She doesn't need gifts, cards, books, or toys, just a person to talk to.

I'm sure you can only imagine what it's like, we've been here for 2 months now!! We still don't have any date for possible discharge. And since we changed vents today, they'll need to get us trained in that. But that's easy. And they're still waiting for the Medicaid waiver to get through, plus the home nursing agency needs to get the staff we need to get started. So while we really WANT to get home, we know there's a lot to take care of.

I think that's it for now...

OK, so here's the realllyyy.... LONG update!!

Well, I guess it’s time to sit down and write this all out, to explain it to everyone. Peanut has been diagnosed with ROHHAD. This stands for Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation, presenting in childhood. This was the syndrome that we have been looking into for a few months now, and somewhat expected them to give us this result. So while it wasn’t completely out of the blue, it’s not something that’s easy to hear.

What does this mean? In basic terms, Peanut’s body has no idea when it’s not breathing. She can look completely normal to everyone around her, but in fact her O2 saturations are at 80%. Normally, we are all around 95-100% for our saturations. In addition, she would often drop down to 50% sats. Now obviously, this is a bad thing. It also means that for several months, or year(s), she has not been getting a lot of oxygen many times.

She has been put back onto the ventilator 24/7 for right now. She’s maintaining oxygen sats anywhere from 95-100 pretty much all the time. Plus, she hasn’t needed to have actual oxygen pushed in as well. The vent is what helps her breath. It assists her in making sure she’s always breathing, plus it helps her take good, deep breaths. We found that she had atelectasis in her lungs. That has to do with the lack of enough oxygen getting into her lungs. There are small alveoli that don’t get filled with oxygen, so they can collapse. Hopefully, now that she has the vent, which helps her take these bigger, deeper breaths, this will resolve itself.

She also underwent about 3 different trach changes. They ended up using one that does have a cuff. But this isn’t inflated until she goes to sleep at night. This helps to prevent any air leaks. She can talk with the vent on still, although it’s a little bit harder. Plus, when she’s trying to talk, she’s actually putting opposing pressure on the vent. So the alarms on that go off all the time.

This is all the respiratory stuff! Then we have the autonomic dysfunctions, which we’re still learning more about. Plus the obvious weight issue. There isn’t anything that they can figure out on what to do with that. This entire syndrome is still unknown. They’re trying to figure it out, research it, and come up with what genetic code will show them when it’s present. But it all takes time. So, we still need to watch her diet, get her more exercise, and stay on top of all that.

They did test her neurocognitive as well. We weren’t really surprised when they told us that she’s in the above average range. She definitely tested at the top of kids with ROHHAD, as well as kids in general. We’ve always known that she’s smart though. She does struggle with certain tasks (i.e. starting a project, adapting to changes, or working with her peers), but those are things that can still be worked on. Plus, once she returns to school, we’ll be able to work these issues into her IEP (Individualized Education Plan). The doctors at CMH really want her to get back into school as soon as possible! They said as soon as she’s home, settled back in, and ready to go, she should get back into that environment.

Of course, we’ll be asked what the prognosis is and is there any cure. The answer is we don’t know, and no. The prognosis is something that we can’t say for sure. The good thing is that since she’s already ahead of the curve when it comes to her intelligence, and we’ve been diagnosed somewhat young, we can preserve all of that. But for cures, there’s nothing to “cure” it right now. It’s just using the tools that are already there to treat the various components of it. Like the vent for her breathing, dieting for the weight, etc… It’s not the best answer, but it’s all we’ve got for right now.

There are some positive things though. We live in the city where the experts are! There are only 2 places in the world that study and research ROHHAD, one is in France and the other is 10 miles from our house! So, we know just how lucky we are in that aspect. Most of the patients that make it there are from out of state, and some from out of the country. The other good thing is that we got in to see them and that she’s been diagnosed. Now we can manage her care and get her to live at the top of her game. Give her the best treatment we can. Plus, we’re willing to be very involved in the program at CMH. I haven’t mentioned this part yet, but Peanut became either patient number 53 or 54 that they know of with ROHHAD, and that’s in the world!! Soo… we’re dealing with something that is so far beyond rare it’s not even funny. But, that also means that we, as advocates, can have our voice heard as well.

Now, we’re back at LGH until probably next week. We’ll definitely have a lot of nursing care when we get back home. All of that is still being worked out though. She would love to have visitors, as long as you’re 18 and older. They’re not allowing anyone under the age of 18 on the floor now, cuz of the flu. So even her brother hasn’t seen her in a week. And she’s in isolation, but hopefully the tests they ran come back negative tomorrow. It’s just a precaution.

I think that’s it for now… I’m sure I’ll have more to add later. But this gives you the major points of it all! Keep in mind she was tested and monitored for 72 hours straight and hubby and I spent about 4-5 hours/day in offices with doctors. So there’s a lot to take in.

I will eventually update more

But not right now! I need to get it all thought out and get all the info straight in my head. It's a lot to take it. We are back at LGH though, which makes it much more comfortable to deal with. But it's still ot home and it'll still be a LOT to go through!! Anyway, I should have more info up here within the next day or two.

It's been 7 weeks today!!

It's hard to believe, but we've been here for 7 weeks now! It's crazy to think about all the stuff that we've gone through. But it's nice to see that there's an end in sight. Tomorrow is the day we head over to CMH. The ambulance will be here around 1 to pick us up. So we just gave hubby another load of stuff to take home. We had so much stuff here. And 5 minutes before he got here to pick up the stuff, Child Life came with more stuff for Peanut & Nutty Buddy.

The one thing that has made life more difficult is the visitor restrictions they've put into place. I guess other hospitals have done this before and for longer, but ours just started it yesterday. So I showed up with Buddy and they told me no more visitors under the age of 18 on the floor. I was pretty pissed since there wasn't much I could do. He was already there with me and I wasn't going to leave him outside the floor in the family lounge! It really irked me that there was no notice. And it's all cuz of this crazy flu crap! Yes, I realize it's serious for some people. However, you take precautions, get the vaccine, and let us have our son with us!! Oh, and there's a lot of volunteers who work on the peds. floor that are teens. They're no longer allowed to volunteer. Same with the high school groups that come in and do projects with the kids.

The worst thing is they did this the day before the Halloween Party! He cried the whole ride home that he was INVITED to the party!! He just doesn't understand these rule changes. I'm glad that it's happening now though, at the end of our stay. I couldn't imagine dealing with this for 7-8 weeks. She still went to the party and parade, and had a lot of fun as a hula girl! They went trick or treating throughout the floor and got lots of goodies. And most of it was NOT candy! Which is great! Then they did some crafts, ate some pizza, and she came back and took a nap!

Anyway, she's been doing good as usual. She's getting better at balancing the time on her valve and the time on the trach collar, so we don't have the mucus plugging up. We just have to watch that. And she's even been able to talk over the trach sometimes, without the valve on. She's been getting out of her room a lot more too, doing things in the playroom.

She is worried about going to CMH tomorrow though. But we've been talking about it, reminding her of all the great Child Life people that will be there, and that the nurses and doctors will be nice too. Just like here. But it's understandable that she'd be nervous. I'm nervous for her, I've never been there either. We're comfortable here, everybody knows her here, she's a star! LOL!

I got her room all ready for her to come home. We were able to organize the spare room next to hers to store all the extra supplies. They should be delivering them this week. We finished up all our training here, have our emergency bag ready to take with us, and are almost set with the nursing care. Still waiting on the Medicaid waiver to be finalized, and hopefully it will be approved soon and it will be all set. But the home health company thinks they should be ready to start staffing our case when we get home.

One thing that continues to amaze me is the way that everybody just knows and loves Peanut!! You can't walk through the halls with her without someone wanting to talk to her. And it's the nurses, respiratory therapists, food delivery services, janitors, all of them! As many have described her, she's an "old soul." She's not like most kids when you talk to her. She has such different thoughts than most kids. I've seen the most serious of doctors actually laugh when talking to her.

Last week there was another patient who was going to be receiving a trach the next day. The nurses asked hubby if the mom could come talk to him about it. I guess her son already had a g-tube, so she was familiar with caring for son, but she wanted to know more about the trach and what it was like. So he was telling her about it and Peanut was interrupting, as usual. Hubby told her to just wait so he could talk, and Peanut's response??? "Hey, I'm the one with the trach here, let ME talk!" How can you argue with that!?! It's just that most 6 year olds aren't ready or willing to talk about it. She also has been covering her trach at night, while she's sleeping, to talk IN her sleep!! Dr. A. was laughing so hard about these things.

So while she may drive us a little crazy at times, it's nice to know that others truly enjoy her and love being with her. She has a big sign up in her room now, from Child Life, for her leaving tomorrow. And then she'll get to have a going home party when she's discharged. And right now, that appears to be November 10th!! Which means only 10 more days!! Oh yeah, and she lost yet another tooth!!!

We're on the right path

We're finally on more of the right path! In the past week Peanut has gotten much better and stronger. She's been able to be off the vent at night for the past couple of nights now, which would be a big step for her. It means that we'd most likely qualify for less home nursing hours, but that's OK. As long as we have one for the night, we'll be able to maintain our sanity! So she's just on the trach collar all night and then mostly on her speaking valve during the day.

We did get some results from her 48 hour EEG too. As we suspected, there were some abnormalities. They had shown up on the previous short-term EEG's, but this confirmed it. And as Dr. I. told me, they're not even in that gray area, it's pure black and white. She does have neurological things going on. She was diagnosed with Primary Generalized Epilepsy. With some added thing of absence. From what we've been told, with at least 2 years of medication, it should be good to control it and she could be seizure-free after that. It is something that kids can grow out of. Only time will tell for Peanut.

As of today, we're finally taking her off the Lasix medication as well as reducing her nebulizer treatments too. Hubby and I have been doing all her inhaler treatments now, since it's all done with the bag for her now. So we had to learn how to do that. We've been learning more and more on taking care of her as well. We each have to do 24 hours of trach care before she leaves.

In 1 week we'll be in the ambulance heading to CMH! We'll spend the 4 days there and then come back here. Dr. A. will be out of town next week, until 11/8, so she'll come back here on the 5th and possible discharge on the 9th. To us, it's not a big deal since it gives us a little more time to see if that Medicaid waiver comes through so we can get our home health care set. We did make a decision on the company too, one that we're comfortable with. So that's being worked on as well. It's just a matter of getting that waiver set!

Last night I got to spend some really good time with Nutty Buddy too. A wonderful, generous lady (Chris), who knows what it's like to live in the hospital for weeks at a time, gave us 4 tickets to a Disney Show. I've never been to any of them before, neither has Buddy. So my friend D and her son joined us for 90 minutes of music, dancing, laughter, and fun! Buddy had such a great time, he was dancing all the time, up and out of his seat, and really had a blast! We had pizza afterwards and then back to our house for a little playtime for the boys. And thanks to D for the gifts for both the kids. Peanut was happy with all her new coloring stuff!

This last week of being here is going to busy with just getting things set and ready to go. I'll need to pack some things up since there's no way we can bring this all to CMH. Peanut thought I was going to throw things out! LOL! No way! And then just getting more paperwork set and making sure that we're all ready. I've never been to CMH, so I don't know how it'll be. Although since they specialize in children, I'm sure it'll be great!

Not too much to update right now

Everything has just been a balancing act for the past few days. The biggest thing is trying to make sure that she's stable in her breathing. With her doctors, we're working on getting her off the vent at night. But it takes time and she'll do OK for a couple nights, then start to struggle. I'm pretty sure that Peanut's going to need a vent whenever she comes home. It may not be all night, every night, but she does need it.

She's really getting used to her speaking valve too! Unfortunately, she doesn't realize that I'm not joking now when I tell her she just can't be that loud. She has to take it easy cuz the force she does use to talk can do damage to her vocal chords if she's not careful. She somehow thinks that she still needs to force it so much, but she doesn't, the valve works just fine!

We're still waiting for the EEG results. Dr. K., one of the neurologists said that Dr. I., another neurologist, was going to start looking over the results. But it's 48 hours of video and results to look through!

OK, while typing this she got all excited and had me come over by her - she lost another tooth!! She's had a really loose one on the bottom for a few weeks now, and eating an apple really helped. It just came out. So now the tooth fairy owes her for THREE teeth!! But we're waiting until she's home to take care of that!

As far as going home, it really doesn't look like until after Halloween. Which is fine. They have a big party here, costumes, parade, trick or treating, the whole thing! So she's not going to miss out on anything, that's for sure. She does get sad missing out on the other things, even though she's having fun with things here. I think at times she just wants to be a normal kid. Even though she's never been a "normal" kid! Ask those who know her well, she doesn't do regular kid things! LOL!

Quick little update

Just wanted to give a little update before going to bed tonight. I spent the past 50 or so hours with Peanut at the hospital. She's doing better, and was getting better at talking over her trach or covering the hole with her finger. BUT - today she got her Passy-Muir valve!! This is a valve that goes over the open hole and lets her to speak. It allows air to come into the trach tube but then when she exhales, there's a membrane that keeps the air from going back out. So the air then goes through the trachea, over the vocal chords, and out her mouth - giving her speech!

Other than that, Nutty Buddy went back to school today. He still has a lingering cough but he needed to go back. As much as he complains about it, he just doesn't like going to school. Except he does always come home saying that he had fun. Today he did so good that he was chosen to pick out a prize at the end of the day.

I've been checking in on the paperwork for all the other stuff that we need to do. Still getting the home nursing care set but we need to wait for this aid waiver to come through. But our paperwork is moving quicker than normal. Plus I'm getting all the paperwork for CMH going too, making sure we stay on top of that as well.

The only other thing today was that she did have an episode pretty much out of the blue! We were all there for dinner and I walked back into the room when it looked like she was bending her neck/head over to look for something. So I said "You're going to get your hair in your food!" Then she looked up briefly and back down again. Hubby jumped up at the same time I got over by her and she wasn't breathing!! He got her head back up but her lips were purple. She started to come back around though and we paged for the nurse. There were about 6 people in there then. We didn't need to bag her or anything, although she wasn't on her pulse ox monitor, cuz that would have shown us she was dropping before it got to that point. But she doesn't wear it all day long now since she moves around so much it doesn't get good readings most of the time.

Anyway, that was enough to give us a little scare again. But with everything else that we've been through, it's a little sad that this is kind of a footnote in our day. She was fine the rest of the night though. Tomorrow we get to have some trach training.

The latest news...

Let's see what's been going on here... The biggest thing right now is that we're working towards getting Peanut off the vent, as that would be ideal. But we also don't want her to get there only to find out that she needs some support at times. As of now, she's only on it at night. And even that it's for limited hours. They've been weaning her off that and using her trach collar more. The past 2 nights it was for her first 4 hours of sleep, and tonight they'll bump it up to 6 hours of sleeping.

For those that don't know, the trach collar has minimal oxygen support, it's basically like a small oxygen mask that you'd wear on your face - but it hangs in front of her trach. Right now the amount coming out is the same as room air. They want to see if she can tolerate that, then she may not even need the trach collar during the day. The vent actually hooks directly to her trach tube and gives support when she needs it. It detects when she's not breathing and will start doing that for her.

Other than that, she's moving along pretty well. We changed back to a smaller trach on Monday which gave her more talking abilities. And so far, not really much in the way of sleeping issues, which was our problem. They're going to order her the speaking valve today too, since she can squeak talk with it now, and talks pretty well if she just covers the hole. And it's really cute! But the valve will allow her to speak better.

We have no idea how much longer we're here, although Halloween is looking like an indoor, hospital setting here. Which is OK. I'm afraid to rush things and not be ready. After being her for almost 5 weeks, what's 2 more! So we'll probably be here until then, so they will directly transfer her via ambulance to CMH. And we were told that Halloween here is a pretty cool party day! Even her regular ped. Dr. S. said that she allows her isolation patients an hour outside of their room to enjoy it!! Gotta love a dr. who realizes that sometimes a kid still needs to be a kid!!

So we're here, we'll be here, and we're getting there. Oh, and even the geneticist who came by yesterday said that if Dr. W. knew of Peanut when they did their most recent ROHHAD study of those 15 kids, she really think Peanut would have been #16. She feels that Peanut fits quite a bit of the characteristics of this disorder.

And Nutty Buddy is doing better with school and such, but he's got a cold now. So he's missed the past 2 days, but he should be better to go tomorrow. We both got about 11-13 hours of sleep Monday night, and I guess we needed it!!

W're out of the PICU!!!!!

Yesterday, Peanut was finally moved out of the Peds. Intensive Care Unit!! Only 27 days there! UGH!! But now we're in another room, still on the good, new floor, with a room that's even bigger. Also a few less restrictions, like the curtains and door can be closed. She's also on the LTV which is the vent she'll have for use at home. Some issue with it in that the tube pops off her trach several times in the night. But otherwise, she tolerates it just fine. And she's off the vent for most of the day now. Only if she seems tired or working hard to breath. And Dr. A. even wants her to stay on the trach collar for the first hour of her sleep tonight.

Now, the other issues are coming to light... trying to get the Medicare application taken care of! That was an exhausting process, but it's started! I can't believe the amount of paperwork, agencies, and people that we have to work with. We have to apply for Medicare to get assistance to pay for Peanut's home nursing. The insurance denied any benefits for that. It's not part of the plan, so they sent it to a review, and they denied it. No surprise there. But we have the appeal phone number to call. Otherwise, they'll be paying $3K/day for her to stay in the hospital until the home nursing is set. She NEEDS that since she'll be coming home on a vent, at least for sleeping at night.

Anyway, so I had to go to the Public Aid office yesterday, which is very out of my comfort zone. It was very odd. But it's done, and hopefully things will move along quickly. Then another agency is helping to get all of this coordinated and such. It's all a very unusual process though, someone told me that there's only about 400 kids in the state on this waiver program.

Now, the HMO won't pay for home nursing care. We're in the application process for the Medicare waiver, but that will take time. And they said it may come to the point where she wouldn't be able to stay in the hospital, but she can't go home without nursing care. So they would send her to 1 of the 2 children's nursing care facilities around here.

Hubby went to look at the one, and it's only about 2 miles from our house. It's an older building, about 6 kids currently there, one at least with a trach, a couple on a vent. They have a 2-1 nurse to kid ratio. Staff is well trained, classroom for school kids, camera monitored system, playroom, and other things. BUT, she wouldn't be in a private room. Plus, they really discourage parents from spending the night, so that the kids can get better, more independence, something like that.

Now, I sent Hubby because being a little more scrutinizing, I knew he'd look harder at things. He said there were a couple things he didn't like, but the good were more than the bad, that was certain. I'm just really not happy about having my daughter spend her days in another facility. One that we won't be at 100% of the time. And one that is not directly involved in her care, know what I mean? I just don't know what we should do!?!

Of course, it's all going to depend on who will pay for this care too? If the HMO will pay this, then why not nursing which is cheaper? And if Medicare is ready to kick in, then again, why not for nursing at home!?

Other than that, she's doing fine. Still not able to talk though. Dr. W. will be in on Monday to look at what kind of trach he should get so that she can talk again. But the apnea seems to have subsided quite a bit. Plus, the EEG finished yesterday, the 48 hour video one. And hopefully that will give us some answers. We think it picked up these shakes and tremors that she has. So we'll see!

Things are just getting a little old and tiring... This constant back and forth, sleeping in the hospital, not getting good sleeps, same food every day, it's just a lot to keep going on. But we're just doing it, and hopefully we'll have something good one day!!

A few little updatesfor today

I haven't been updating as often as things aren't changing too much these days. On Friday, they did another bronchoscopy. They were hoping to see about the scar tissue in her trachea, but it was still pretty swollen, so they didn't want to mess with it. They also put the larger trach back into her. There were still to many apnea episodes, so they wanted her to have more air into her lungs.

Peanut's been doing well though. It didn't slow her down from eating! LOL! But her talking has been hampered again. She'll learn it though, I don't doubt that. She's sitting up in the chair all day now too, no more in bed. She's done with all drugs, except lasix until the fluid in her lungs can clear up. But that's getting better too.

The best thing is she's started taking walks. She'll fight us, of course, but she does take a walk all the way down to the other end of the floor and back. Little things that are helping her get better. This will also help the fluid in the lungs, which would get her off the lasix. Plus, it gives her a chance to meet other kids on the floor. There's a boy, D, who turned 16 a few weeks ago, and he also has a trach. He's across the hall from us. And it's funny because D can talk, but not walk, and Peanut can walk, but not talk! It was quite humorous last night when they met.

Nutty Buddy has been doing better with school too. No more phone calls to get him early, he's having good days at school, eating a little lunch, and not crying as much. I guess he cried this morning, but as hubby said to him, "Has crying ever stopped you from going to school!?" And when he realized, "No," he sort of settled down.

He also saw the family therapist that Peanut started seeing, just to give him someone to talk to, make sure he's handling things OK, or at least appropriately. I also saw his former OT, and she gave some tips and said if we ever want to bring him by for a little bit, he can use some of the OT equipment to help him. He has Sensory Integration Disorder, which hasn't been much of an issue in the past few years, until all of this!! So little Nutty Buddy is still our Nutty Buddy!!

Tomorrow they're going to try and get her 48 hour EEG started. That would be great, since that would give us some other information that would be really helpful. Plus, the vent that we'll take home should be coming any day now. Then we can switch her to that and learn to use it. We've gotten good at suctioning the trach, cleaning it, and changing the trach ties. We still need to go through CPR training, the vent training, and trach changing.

I think that's it for now... I'll post more info later this week!

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!!!

Oh how fast excitment turns to frustration!

We were so excited yesterday to get the news that the HMO had already approved the referral for Peanut to go to CMH. This is where the specialist is that might be able to help her. And of course, that's a big "might!" But it was something we wanted. And we all know how HMO's can be, so we were thrilled that it didn't take that long.

Anyway, I should have been a little more cautious... I called today to make the appointment. Yikes! They need all this paperwork first, detailed email from her pediatrician, some genetic testing done, the referral, and then various forms/paperwork from us. And then, they can start looking into appointments. Which, by the way, is booked through February!!! Since Dr. W is the expert in this, of course she gets requests from around the world. The only thing the woman I spoke with said is that we're lucky since we're local. So if someone gets sick, which she said usually happens a few times, then we'd get in. And the appointment is a 4-day, inpatient one!!

Sooo... now we're back to being on hold again. We need Dr. S. to get this info to Dr. W. as soon as possible, so then we can at least get on the list for an appointment. I really should have known better. At least this isn't anything that is anyone's fault, it's just the reality of the situation. Hopefully though, we'll at least be able to get it set up soon!

Today was a bit rough...

Today I took Peanut to see her therapist again. That was only the beginning of our day. She's great though. She's going to help us work things out, work with her on her anxiety issues, figure out what's going on, and be ready for problems that could arise at school. She's very nice, definitely works with kids, so that's great! She spent about 20 minutes with Peanut alone today. When we first saw her, it was just all the background, which in our case, is a lot.

Then we had to run over to the hospital to see her pulminologist. She last saw him in 3 weeks ago when she was in the hospital overnight. He came in and updated all her info, talked with her a bit, checked her respiratory, the normal stuff. Then he asked me to step into another room to talk to me without the kids there. As I told the medical student with him, I felt like I had been called to the principal's office in school.

He wanted to talk to me about what he thinks is going on. Basically, he has no idea. He said she is a very special and unique case. There is nothing about her that has presented as normal or routine. He talked about her sleep apnea, the obesity, endocrine issues, and then the possible seizures, plus the central apnea (which is when she stops breathing while she's not sleeping). As he told me, there is nothing that can cause all of this issues to occur in one person, unless there is something in the brain. Yes, sleep apnea can cause obesity, and vice versa, but when you add in the central apnea, and I think there was something else he said (there was a lot to digest), these things just aren't related by any other organ.

Dr. A. wanted the 48 hour EEG done, which is scheduled to take place in 3 weeks. We're doing an ambulatory one, so she doesn't need to be in the hospital. But she can't go to school for the 3 days. He wants to get a better picture of what is going on inside the brain. I guess that other doctors weren't so pushy on getting this done, they wanted to wait and see if she'd have another episode. He insisted that no, we won't wait for that! So that was good to hear.

Now we're starting to reach a point where we need to start looking at the more obscure and rare disorders or syndromes. He would like to get us just this little more info, from the EEG, so that we can start searching out experts that will be the best to help us. I have no idea where we're going to start. This is such an open road, but so limited too. Plus, I'm sure the insurance thing is going to come into play on all this.

This was the first time that any doctor has told us that they just don't know what is going on. But he also firmly believes that it's not food/calorie related. That was good to hear too! I've felt that way for a long time now, but I know not everyone has believed that.

We're also waiting for Dr. S., her pediatrician, to get approval (she's working on documentation for the HMO). This will hopefully get us into a specialist at CMH. This may be a big step in a direction we need. But again, who knows. I hate to even think it, but there's always that ONE person who has something doctor's have heard of. Or that ONE kid who's the first to have something. There's a reason that there's 1,000's of rare disorders. And we're talking about only a few hundred people having this things.

Sooo... we don't have any answers, just more questions to ask. But it was still productive, it's good to know that a doctor DOES see that there's more than what we can answer right now. And that we need to go further.

It's been awhile...

There really hasn't been anything to update as of late. We did get all that blood work done, and haven't had any results yet. There hasn't been any change in how she's doing really. I have to say though, that Peanut's trying to not fight us on everything. She's willing to eat things that are a little healthier for her. Yet it's so darn hard to even find stuff. It's amazing how much crap is out there. She does talk about doing things to burn off calories though.

Hubby has still been sleeping in her room too. She still dips down at times, but has gotten a lot better. And she's been off oxygen for the last 2 days now. That's good, since we were getting concerned about her being on it too long. And she doesn't like having the pulse ox on every night.

We did find something else to look in to, but we're waiting on getting more information. The one good thing is that if this turns out to be something, the best doctors who have researched this disorder are here at CMH and RMC. Peanut's pediatrician is good friends with one of the docs who has done this research, so she's been in contact with her. They're trying to work on getting Peanut in for the genetic testing that this requires. While we don't want it to be this, having an answer and somewhere to go would be a little helpful.

Right now we're getting ready to start kindergarten in a couple weeks. And as usual, our end of the summer always gets busy. We spent the entire day downtown the day after their birthday. We did the Sears Tower, went out on the ledge, took a Double-Decker tour bus around, spent time at Millennium Park, and had dinner down there too. The next day was at a local water park. We had beautiful blue skies, perfect temps, and a nice park. After that, we went back downtown to Navy Pier, to watch the practice runs for the Air and Water Show. It was another picture perfect day!

The biggest thing for them has to have been their birthday party this week. We had it at a local, indoor play-place and it was awesome! We didn't have to clean up, make food, get a cake, goodies bags, none of it! The package we chose came with all that, unlimited play, tokens for the games, and a pinata too! It wasn't a big party, which was totally fine, they all had fun.

We hope that we'll have some news, answers, or directions this coming week. But we know that this kind of work takes time. But maybe some answers from the blood work that they did.

Had to give more bood and another path to follow... on their birthday!!!

Apparently on Friday, when drawing 11 vials of blood, they missed something. So we had to go back today and they took one more vial of blood. She was great, as usual, and they got it very quickly. No answer yet on when we'll get any results. We know that some of the samples need to go to a special lab in California, so I'm sure that will take some time.

In the meantime, someone passed along some info that we're looking into further. It's a rare condition, so we don't want to get too deep into it yet. However, we're really getting on top of it right away. Luckily, it appears that CMH here in Chicago leads the research on this. We also called her ped., Dr. S., and she spoke with hubby. She said it's something to certainly look at further, and she's good friends with the doctor at CMH that does this research. So that was something that sounded really positive and good. Plus, the new endocrinologist we saw last month, Dr. L. also said we could look into having this genetic test done, and it's done at the hospital he's at! We just have to get insurance approval. But at least Dr. S. is on top of it too, and pushing right along with it.

We also met with a therapist today. The appointment was initially made for Peanut. However, this will end up being a family type thing too. Which will be good for all of us. We have Nutty Buddy talking about the "not breathing incident" often enough. But we need to really address her anxiety issues.

On the positive side of life, we celebrated their 6th birthday today! They're having a party next week, but we went out to dinner at Steak n Shake, then to Target so they could pick out one toy as a gift. Nutty Buddy got a NASCAR truck set and Peanut picked out a craft/drawing set. They seemed to really enjoy the day.

Once we have some more info to share, we will. And we hope it will be coming in soon!

Blood work was done today!!!

I have to say I'm pretty happy with this other pediatrician we've been seeing now. We saw her on Monday, for their annual check-up. At that time we went over all the stuff that the other endo. dr. wanted her to have done. So she got us the bone age scan referral immediately, and we did it that day. Then she got us the nutritionist referral right away too. But the blood work, she had to get some pre-authorization for. As she said, she didn't want us to go through it, then have our HMO deny coverage since they want to send it to a special lab in CA. I realize that these docs are busy, so I didn't expect it really quickly.

Now, since she was in the hospital Monday/Tuesday, I figured Dr. S. would at least try to get it in quickly. Well, they called this morning and it was approved, so we could come in and pick up the referral. Since the husband was home, and didn't leave for a few hours, I took Peanut and went up to do it.

They had to take ELEVEN vials of blood!!! But luckily, it only took one stick, right on top of the bruise from when the medic tried on Monday night. And she was completely fine with it. I'm just so happy that at least this blood work is going! And then when we were leaving, Dr. S. called my cell. I guess she called the house and talked to husband, who told her we were there. She wanted me to stop by and pick up some calorie information for Peanut. She found the recommended caloric intake for her age, but we cut that to 90%, so about 1050-1100 calories/day!

I just can't believe that we're actually making progress on some of this stuff. Actually, all the stuff that the endo. dr. wanted. Of course, no idea how long it will take to get the actual results!

Here's where we are now

OK, so we came home on Tuesday night, which was good. We don't like being in the hospital for long periods of time. She did well when she was there, no really respiratory problems, all was fine. They did an EEG on her that afternoon. Dr. I., her neurologist, came in to tell me the results. Apparently, there were some abnormalities that were found. So, this means that she "could" have a seizure again one day. It doesn't tell us if she actually had one on Monday when she stopped breathing. It can only indicate that she "could" have one again. Not exactly the best news.

He gave us 3 options, 1 - wait and do nothing, 2 - put her on anti-seizure meds, or 3 - give her a 48 hours EEG. He recommends doing the EEG first. So I got that scheduled as an ambulatory one right now. We're just waiting to confirm again that's what he wanted. He wrote that on the script, but her discharge papers said video one, which means she'd be in the hospital for those 48 hours. Unfortunately, we couldn't get her in for the ambulatory one until Sept. 15th. They only do the hook-ups on Tuesdays, and disconnects on Thursday. And they were booked until the 8th, but that's their first day of school.

She'll miss 3 days of school as it is with this, she can't go to school, be active, etc... when she's hooked up like this. That should be interesting, since her brother will still have to go, without her. But we'll deal with that.

Now, we could start the meds just to make sure, but we're not really comfortable jumping right to that. Since we can't really know for sure that she's even had a seizure, we don't really want to start down that path. We'd rather have some more information to see what's going on. Get a longer-term, deeper, bigger picture of what's going on.

I think that's kind of it for now. We did see the nutritionist again, went over things, and she's still not convinced that all of this is only from calories. But nothing else to do there.

Dr. S. was wonderful this time too!! She's going to look into getting pre-authorization for all that blood work that Dr. L. wants to do. So that there's no denying it by the insurance company down the road. And she's going to see what we can do about a PT program for Peanut, something to get her more active, but not with us. She doesn't always respond to us very well, but someone else could really help her. Plus, we asked for extra pulse ox monitor cords, the ones that stick to her toe. We got home from an all-day trip to Kiddieland yesterday to find the box of them, shipped from Apria! So it was super quick!!

The one piece of good news is that we got the results of her bone age scan they did on Monday. Dr. S. said that her bones were the age of a 3 1/2 year old, which is good. I wasn't there, she told husband, but he said that as in most things, younger is better. It means that her internal body isn't growing beyond where she's at either.

I think that's it! As I mentioned above, we went to Kiddieland yesterday! The kids had a blast!! Nutty Buddy went on everything that we let him. Even the higher swinging boat thing, the Scrambler, and all that. But Peanut also went on the roller coaster and the log ride, which was a lot for her! It really was a great time, so glad we got to do that, and that she was out in time.

Back in the hospital

Yep! We're here again! Last night was by far the scariest time of my life. My little Peanut had stopped breathing!! Thankfully, I saw that she had been dozing off, so I kept nudging her to wake her up. So when I did it, and she didn't respond, I checked her. To my horror, her lips were purple and she most likely wasn't breathing.

I managed to grab the phone and call 911, then get her on the floor. The dispatcher was helping me to get her in a better position to help breath, I got her head tilted back, they were having me give her a couple of breaths too. Then she started to have what we think might have been a seizure. Her right leg was twitching. By this time, the paramedics had arrived. I was so happy to see that Ms. Vicky was there! She's one of the medics that we see when we visit our fire station, Peanut really loves to talk to her.

After what seemed like eternity, she finally started to come around a bit, even recognized Vicky. By the time she was in the ambulance, she was starting to come fully back to normal. They put her on some oxygen, checked her blood sugar (normal), and tried to start and IV. But after one failed attempt, Vicky wasn't going to try anymore.

Once in the ER, they decided that there wasn't any reason to try anything. Since we've got all these tests on order, from the other endo. dr., and we just saw her ped. Dr. S. yesterday for her annual checkup, there was no reason to check things there. Instead, they got her up to a room, I went back home and got her some things. Daddy spent the night here, like he always does. He said that she only dropped down twice, and both times, she came back up within a very short time, and on her own.

Now today, she's seen Dr. A. and Dr. S. After talking to Dr. A., he wants neuro to see her again, to rule out any possibility that this is an actual seizure disorder that we're looking at. Although Dr. S. doesn't think it will be that. And I tend to agree. I believe that it's just the lack of oxygen that caused it. She's also going to look into Physical Therapy for her, something that would be an exercise type of therapy for her to do. This way, it's not me directing her, someone else can work with her. I've also got a fit kids class to enroll them into through the Park District this fall.

The other thing we are going to try is a neck brace. It would be for when she's getting sleepy, starts dozing off, at those times of the day, so that she can't bend her neck/throat over and cut the airway off again. It may no be comfortable, but it's something that can help prevent this again!

I think that's it for now... as we now more, I'll update. I do hope that all of this will help Dr. S. with getting the approval for this special lab. She was going to call to ger pre-approval from the insurance company. Thanks to everyone for all the thoughts and emails.

Spent last night in the ER

Ugh!! It just had to be when hubby is out of town! I went to get Nutty Buddy to bed and went to check on the Peanut. OMG!! I could hear her struggling to breath!! I checked her and her pulse ox was 18!!! Yes, full freak out mode! I ran into the other room to hook her BiPap machine back up to oxygen. I also tried to wake her up, with Nutty Buddy's help, and she wouldn't respond. She was just drenched in sweat too. After what seemed like several minutes, but I'm sure it wasn't, she started to come out of it a little bit, and with about 5 liters of oxygen, she finally piqued up!

I called hubby and Grandpa right away. Hubby said to get her to the ER right away, and then Grandpa met us up there. This was around 10:15 p.m. It took us about 1/2 hour to get into a room even, which is more unusual. But we did, and luckily we had Dr. F. and Dr. H., both ER docs who have seen her before. It makes it a lot easier to not have to explain her long, complicate history to people all through the night.

By midnight, Grandpa took the boy home to bed. While he normally loves to stay up late, midnight was really pushing it, even for him! And since it appears that for once, we wouldn't be addmitted, I sent them back home. They gave her a nebulizer treatment, then a chest x-ray, just to rule anything out. But even Dr. F. said how odd it all was since she had no illness symptoms at all! She hasn't had a cough, cold, sneezing, nothing!

She finally fell asleep, while I sat around until 4 a.m. They had to wait for the chest films to come back, and the radiologist checked them. They said there might be some residual pneumonia in her lungs still, and it can stay there for a long time after, but it didn't appear that it was anything new at all. They gave her a course of antibiotics, starting in the ER, to help kick anything out. It's only a 5 day course, so not bad at all. The longest part was waiting for the medication there! Her poor nurse, Matt, felt so bad! He had gone on break and had another nurse covering, so when he saw us still there when he came back, he was shocked! He checked with the pharmacy, and apparently, they mixed up her meds, but left them sitting on the counter instead of sending them over! He even had to call a second time! Argh! But no biggie!

She was fine all day, and is hooked up to her pulse ox again all night. She did have a de-sat episode about 45 minutes after I put her to bed, but I went up and adjusted her, moved her pillow out so her airway could open more, and she's been fine. It's just so damn exhausting!!!! I only got about 3 1/2 hours of sleep last night, or very early this morning. And of course, kids aren't that forgiving when a schedule is all screwed up!

Hopefully this was some odd episode and she's all fine!!!

Online calorie/activity counting again

I'm going back to keeping track of all of the stuff Peanut eats and does everyday! I had to go back to find a good one, mine appears to be gone, but I'm going with CalorieKing.com - although I had to age her 1 year. It only takes the info if you say the person is age 7 or older. At least it's only 1 year difference. So now I can get a better handle on things. Plus I like the amount of restaurant foods that are on it!

We saw the second opinion endocrinologist today

So today was our appointment with Dr. L., another endocrinologist. I felt a lot better coming out of his office then I ever did with Dr. G. We spent 3 hours there, they made copies of the reports that I had, read things over, talked about things, checked her out, and gave us a ton of follow-up things.

First and foremost is the watching what she eats and getting her more exercise. That's the no-brainer in my opinion. But I always want her to hear it again and again, especially from the doctors. The dr. gave her a new bucket of sidewalk chalk too, telling her he wants her to play hopscotch. And to follow-up on all of this, he wants us to see a nutritionist again, have them do a calorie count and go over portion control/sizes again.

Then he wants us to get her a bone age x-ray done. I guess they can see your growth by x-raying the hand/wrist area. Since they measured her weight and height today, they commented that she appeared to have a short stature. She measured low for height now. That was something that nobody else really said before. She was always near the lower end, but as I pointed out to Dr. L., she doesn't come from tall stock!

Finally, he wants a ton of lab work done. He said they're all tests that previous doctors never did or that they're out of date already. Plus, he would really want them to send the lab work to a lab in California that specializes in pediatric testing, then the results would give him a lot more answers. The tests they want us to do include: Karyotype (chromosomes), a.m. Cortisol, ACTH, fasting lipid panel, chem-21, CBC, leptin, Free T4, Total T3, TSH, IGF-1, IGA, IGF BP3, anti-transglutaminose, hydroxy vitamin D, CRP (creatine protein). Now, most of these things don't mean anything to me. Soo... tomorrow morning I need to talk to Ms. S., who handles all her referrals. I don't know how this all works, getting referrals for this work, when it's from a doctor that's not at her normal medical site. That whole HMO thing.

Anyway, she did really well, it was such a huge help that my parents came with. Then grandma could stay in the lobby with Nutty Buddy. He wouldn't have sat in that small room for the 2+ hours we were in there. As I said too, I felt a lot better coming out of there. Granted, it may still come down to her eating and that's it, but I just felt a little bit less "the bad person" when I left. I felt that Dr. L. spent way more time with Peanut than Dr. G. ever has. Oh, and his P.A., Dr. O. was really nice. We spent most of our time with her anyway, she was great, so thorough!

I'll update some more when we get a plan of action for all the testing to be done. And I'll just keep hoping that they find something!

Now, for something totally different...

I've said before, photography is a little hobby of mine. I'm trying to learn, get better, and maybe
one day, make some sort of money on it. But for now, it's just a fun thing. I've been taking a lot of pictures lately, with the 4th of July and all that going on. So I thought I would share a few of them...

These are images that are a few of my favorites from the past few months. I'm going to add some of my all time favorites later.


This is just a collage of a a bunch of my favorite flower pictures:



One of my more recent favorites, from the Chicago Botanical Garden



Buckingham Fountain



Lisle's Eyes to the Skies