Princess Alyssa's Christmas Wish/ GKTW/ Dec 10-16

[maroo]

It wouldnt have matter if it were the only package honestly. Alyssa really is an appreciative child. She was as excited for her as if it were her own.

That is just precious. What a kind-hearted child.

 

[yinyanggirls]

What a great ending to a crummy day! I'm so sorry to hear she has to be in for Thanksgiving. At least her trip is close and you can help her to think about that.

 

[teresajoy]

I am so sorry about the disapointing appointment!

I'm so glad the Big Give could bring a smile to such a bad day!

 

[chrissid7]

OMG I am so frustrated!! Alyssa is getting worse and no beds are available!!!We were waiting all day. I actually got a call at 7 am saying they had a bed (we were still asleep) and then another 1 at 7:45 saying sorry that they had to give the bed to an emergency. So we never got a call back to come in! Im very disapointed and scared right now! If she doesnt get a call in the morning Im calling her docs and letting them know that we are switching to UVA. I cant handle this sitting and waiting and knowing that she is having trouble and she is scared too. Tonight while eating dinner she cried and said that when she was running today she lost her breathe and it took a long time to get it back and that she was soooo scared. That ripped me up on the inside!!

I hate it! Im aggrivated and I just want to see her feel better! God give us strength!

 

[pipersmom]

Hey hon, just saw your comment on FB as well..as I said there, if you need the lowdown on UVa, call me! I can't imagine what you're going through right now..well..kind of can, but you know what I mean. Tell Alyssa they have art therapy and music therapy, a great teacher, play bingo on tv..Piper loves it there. Still not the same as being at a place you know, but they do have great programs on Peds. Praying for you guys.

 

[chrissid7]

Hey hon, just saw your comment on FB as well..as I said there, if you need the lowdown on UVa, call me! I can't imagine what you're going through right now..well..kind of can, but you know what I mean. Tell Alyssa they have art therapy and music therapy, a great teacher, play bingo on tv..Piper loves it there. Still not the same as being at a place you know, but they do have great programs on Peds. Praying for you guys.

Thanks Hirl, I really truely appreciate that! I think it might just be time. MVC is wonderful dont get me wrong but its days like today that I just want to scream and I keep asking myself am I doing everything I can, and I feel like if we dont look elsewhere that question cant be answered yes. It will be so hard because we have a family there. They also have great programs and we love all of the teachers, nurses, therapist we are even on a 1st mane basis with the housekeeping staff...they are amazingly sweet!

OMG what to do what to do! So how do you feel about the doctors there?

We had a great doctor (Dr.Rubin) come from wake forest and he is amazing. He brings so much to the table and I want the chance to see what he thinks and get his opinion. During our last admission he was on for the weekend and we got to meet him but it was more introductions than anything so I was hoping that he was going to come back and just blow our minds, but he didnt. His 1st impression was very good and Alyssa loved him right off of the bat, he is a magician and he played and made her laugh. It was nice but I was looking for another kind of magic, the kind that makes my babies lungs function better than ever.

I would like to know what you think about the doctors there, and how many do you see. We have 3 including the new Dr.Rubin.

 

[pipersmom]

Piper's primary is Dr Froh, she's a great woman, I'll admit she seemed cold to me at first, but..as she got to know Piper better she has warmed up, she's just a reserved person, I think. We see her for all Piper's clinic appts, etc. On rounds or weekend calls, we have also worked with Dr. Yu (she's great as well, I love her) and Dr. Gaston. To me the fact that Dr. Froh is ALWAYS the one to see Piper is a good thing, she knows her, how her lungs work, when she's hearing something new, etc. She's also very interested in what YOU think and the changes you've seen, willing to discuss any new therapy ideas you bring in, etc. She wouldn't be doing magic tricks for Alyssa..lol..but she would be giving her excellent care. There's also a Fellow with them right now, Nico..(1st name, he's always let Piper call him that, so I have no idea of his last name..lol)..he's german, kind of cute..Piper has a huge crush on him, it's totally funny. I suspect Alyssa might have the same reaction! What else would you like to know?

 

[chrissid7]

Thats cute that Piper has a crush on him lol. Alyssa has had a crush on a couple of different staff members lol. She thought Dr.Rubin was adorable, which totaly surprised me because he is older than her parents but he is quite funny, and very sweet so i can kinda see it. Alyssa loves people for their personality and I love that about her. If you dont have a bedside manner you can count on her being quiet.

I guess my biggest thing right now is what is their "standard" CF routines. How often are PFT"S done while inpatient, how often is respiratory therapy done and is it by hand or vest, what is a typical tune up length of stay. Are they trying anything new?

Ok several questions lol

 

[pipersmom]

Thats cute that Piper has a crush on him lol. Alyssa has had a crush on a couple of different staff members lol. She thought Dr.Rubin was adorable, which totaly surprised me because he is older than her parents but he is quite funny, and very sweet so i can kinda see it. Alyssa loves people for their personality and I love that about her. If you dont have a bedside manner you can count on her being quiet.

I guess my biggest thing right now is what is their "standard" CF routines. How often are PFT"S done while inpatient, how often is respiratory therapy done and is it by hand or vest, what is a typical tune up length of stay. Are they trying anything new?

Ok several questions lol

It's okay.. PFT days are Mons and Thurs. RT is entirely based on your home routine. Obviously they will step it up if needed, but they will follow your routine as much as possible. If she's used to hand CPT, they'll do hand, they can do a mix, whatever you do at home, they really do emphasize not throwing off your routine any more than absolutely necessary. Ordinary tune-up time is 2-3 weeks. We normally do 3 weeks, but I think a lot of that depends on the severity of the exacerbation, etc. Dr Froh tends to be aggressive, which I think is a good thing. They do clinical trials, were right on top of hypertonic, and put Piper on ibuprofen after I mentioned it and she researched it. My only complaint at all is getting return phone calls in a timely manner, but..if I don't get a call back the same day, I tend to get irritated, which may not always be necessary, lol. When she is getting sick, they are usually very good about returning my calls, and I would never hesitate to call after hours.

 

[maroo]

OMG I am so frustrated!! Alyssa is getting worse and no beds are available!!!We were waiting all day. I actually got a call at 7 am saying they had a bed (we were still asleep) and then another 1 at 7:45 saying sorry that they had to give the bed to an emergency. So we never got a call back to come in! Im very disapointed and scared right now! If she doesnt get a call in the morning Im calling her docs and letting them know that we are switching to UVA. I cant handle this sitting and waiting and knowing that she is having trouble and she is scared too. Tonight while eating dinner she cried and said that when she was running today she lost her breathe and it took a long time to get it back and that she was soooo scared. That ripped me up on the inside!!

I hate it! Im aggrivated and I just want to see her feel better! God give us strength!

Oh...this just makes me want to cry. Is that normal? Are they just seeing a high rate of illness right now?

Gosh...I am praying for you guys. Hopefully you can get it all worked out.

 

[chrissid7]

It's okay.. PFT days are Mons and Thurs. RT is entirely based on your home routine. Obviously they will step it up if needed, but they will follow your routine as much as possible. If she's used to hand CPT, they'll do hand, they can do a mix, whatever you do at home, they really do emphasize not throwing off your routine any more than absolutely necessary. Ordinary tune-up time is 2-3 weeks. We normally do 3 weeks, but I think a lot of that depends on the severity of the exacerbation, etc. Dr Froh tends to be aggressive, which I think is a good thing. They do clinical trials, were right on top of hypertonic, and put Piper on ibuprofen after I mentioned it and she researched it. My only complaint at all is getting return phone calls in a timely manner, but..if I don't get a call back the same day, I tend to get irritated, which may not always be necessary, lol. When she is getting sick, they are usually very good about returning my calls, and I would never hesitate to call after hours.

Thats awesome! Thank you so much and that does make me feel better. That sounds very much like our hospital except they make everyone do 4 times a day CPT by hand unless you only do the vest I think. Alyssa has been on hypertonic I guess for almost 2 years now but she hates it and sometimes I wonder how much she is getting in.

I know this is a crazy question and its always hard to figure out just why sometimes but what do you think helped Piper to get back to 70%. I will do anything and I mean Anything to see 70 again!!! Alyssa's base was around 70 for a long time and them all of a sudden with no real reason she droppped to 50 in 1 month... again they have no idea why they just said "sometimes thses things happen its the nature of the disease". Bull spit! I need reall answers but there are none.

I thinkim going to try the ibuprophin for a while. but did you change anything this time to get that 70 back. Thats sooo awesome!!!!!

 

[pipersmom]

Thats awesome! Thank you so much and that does make me feel better. That sounds very much like our hospital except they make everyone do 4 times a day CPT by hand unless you only do the vest I think. Alyssa has been on hypertonic I guess for almost 2 years now but she hates it and sometimes I wonder how much she is getting in.

I know this is a crazy question and its always hard to figure out just why sometimes but what do you think helped Piper to get back to 70%. I will do anything and I mean Anything to see 70 again!!! Alyssa's base was around 70 for a long time and them all of a sudden with no real reason she droppped to 50 in 1 month... again they have no idea why they just said "sometimes thses things happen its the nature of the disease". Bull spit! I need reall answers but there are none.

I thinkim going to try the ibuprophin for a while. but did you change anything this time to get that 70 back. Thats sooo awesome!!!!!

I should clarify, CFers at UVa get 4x daily CPT routinely when in the club, they will also do overnight CPT if needed, which Piper usually does, at least to begin with. If sats improve and o2 isn't needed, they'll stop the overnight treatments.

I completely understand why you're asking hon. When she dropped into the 50's, it was after she had spent most of the summer with her Dad, and he is less than diligent when it comes to doing her treatments. I won't go into it too much here except to say I have taken him back to court over it in the past. I do know we added azithromycin to her regimen..*thinking* about 2 weeks before she ended up back in the hospital. She doesn't culture pseudomonas, which is why azith is usually prescribed, but I asked about it, and Dr Froh said "it can't hurt" (love that!). They are currently doing studies of azith on people w/out pseudo as well, so there does seem to be a train of thought that it can help with other bugs. We also started bactrim 2x daily continuously during her Sept hospitalization, when her MRSA actually showed vulnerability to it! We also continue to do TOBI even without a pseudo culture. I don't know that there's a "magic" answer unless it is the drug cocktail she started after her Sept stay at the club. (And prayers).

 

[chrissid7]

Thank you so much!!! I actually do have a list of things to ask them and azrith.. is on the list! She also hasnt cultures any of those organisims for a while but they always like to say that something may be lurking down deep, so I say now lets throw it all at it!

I normally would tke the opposite approach but im really afraid right now!

You are so sweet to stay up with me and answer my questions heres another

 

[chrissid7]

alos Im sorry that you have to deal with the other stuff too! We have a blended family and I am blessed that our older 2 kids dont have much to do with the "others" so usually no issues there.

I need to fix my aim lol... so we can talk!

 

[yinyanggirls]

You are so sweet to stay up with me and answer my questions heres another

Isn't it such a relief to meet someone who totally "gets it"? I was so thrilled to meet a mom with much in common right after we moved here three years ago. Finding Docs and therapists, and deciding on schools, is all so much easier when you have someone to compare notes with and bounce ideas off of. I have no idea what you guys are talking about, but I'm sure we all have so much in common as far as the kids who have anxiety just being in a Dr office, or the sensory issues many of them have, or the social skills that are hard to learn when they spend so much time with adults, etc, etc.

 

[pipersmom]

alos Im sorry that you have to deal with the other stuff too! We have a blended family and I am blessed that our older 2 kids dont have much to do with the "others" so usually no issues there.

I need to fix my aim lol... so we can talk!

lol @ aim..that would work.

Before the divorce, we were living in Cincinnati, which has one of the best CF centers in the country. Dr Acton (the lead there) was all about being aggressive from the start and not waiting for things to go downhill, so that's always been my main goal. It sucks sometimes, just because of the time element, but I have never regretted it for a moment. I would much rather have her doing a few things that aren't necessarily helping and a lot of things that are, than only doing the "common" stuff. I don't mind staying up, I've been where you are, and I know how much it bites! But on that note, I do need to go to bed. Please be sure and let me know what's going on tomorrow, and if you end up at UVa, be sure to throw Piper's name around, you'll get instant recognition..lmao! Also if you end up there, when they bring her first tray, tell them you want vouchers for the rest of the time..then you can go down to the cafeteria and pick out things for Alyssa she'll actually eat..there's a grill, and the regular part of the cafe! (You can even get both of yourselves breakfast on the voucher *it's dirt cheap*..just be sure to hit the grill for it, the stuff in the main part is ermm..less than great!)

 

[chrissid7]

You rock thanks and ill keep ya posted!

 

[pipersmom]

Ohh..I almost forgot...and the parking is FREE!! LOL..I was looking at the MCV website earlier when I thought you guys were going in today so we could send Alyssa some pixie dust, and saw the parking fee and my mouth dropped open..like they're not getting enough of your money now !?!

 

[maroo]

Ok...totally lurking...

But that meal voucher thing....is a GREAT idea! And that alone...would give me reason to try that place out! The junk they try to feed Lauren and William when they are in club med is just disgusting! Who can get well when they can't even eat?

 

[chrissid7]

Ok...totally lurking...

But that meal voucher thing....is a GREAT idea! And that alone...would give me reason to try that place out! The junk they try to feed Lauren and William when they are in club med is just disgusting! Who can get well when they can't even eat?

We are given a 10% off voucher 1 time when we arrive but it doesnt go far. Alyssa has so many dietary restrictions that her menu is limited to baked chicken breast (its so plain and boring) and cheese omlets. Needless to say we bring in lots of food! We are so blessed to only live 15 mins away (another reason its hard to leave).

As far as the parking goes, it doesnt really get us because we dont use it lol. My husband works across the street and he has a spot so he walks over and if he is relieving me to go home for a while he drives to the valet loop and we just swap off. You can purchase a weekly pass for the deck too I thinkit was like $8.

Alyssa can have the chic filet waffles fries and they will bring them to her sometimes as a treat lol. We have a McDonalds, Chic Filet, blimpies subs and alpine bagel. There are also some great street vendors in the city on the same block. Problem is the cost! I wish they did more to offset the cost of food especially when the hospital can not offer her enough to keep her happy. Nutrition has a couple of ladies who go out of their way for her though. 1 even went to the grocery store and brought back Amy gluten free mac and chesse when Alyssa had her feeding tube placed. They had to put it in a blender for her and it was gross, but so nice that they tried so hard.

All in all its a great place, but it is no good to us if WE CANT GET IN!!

Thanks girls!