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!