Off to see the "Real Tree" - April 19th - April 26th! Ali's Wish Trip PTR!

[kellyw8863]

Im sorry Ali is dealing with the temps and hope she is better soon. I havent had a chance to go read her year-in-review but I plan on doing it soon.

Hi Kelly,

I just wanted to check in and see how Ali was feeling tonight. Hoping you guys aren't headed inpatient. Keeping you all in our thoughts and prayers. Can't wait to hear more about your trip plans.

Hey Kelly..
Keeping Ali in our thoughts and prayers and hoping the extra rest helped!!

Thanks for the thoughts, ladies. Unfortunately, I think we may be fighting a loosing battle. In a last ditch effort to keep her home, I bought some stuff to irrigate her sinuses, but she's starting with the goopy eyes, which is usually a sure-fire sign of an infection. I'm going to give the saline stuff until tomorrow to work, and if there's no improvement, I imagine we'll be heading in. It's just so frustrating because it seems like overkill for a sinus infection.

Hi Kelly, I've missed so much this past week! I think my list of subscribed threads lies to me sometimes. It is not always showing me which ones have new posts. Anyway, I'm so sorry to hear Ali is so sick. This is the one and only thing I hate about this time of year. I hope she's doing better tomorrow. It's frustrating when it goes beyond a week!
On the wish side of things, our wish granter came alone because her partner had another appt. She gave me all of her contact info, just in case, but months later, we've only ever dealt with the one we first met. How funny that you guys already knew yours.
Sounds like you had a nice Cmas. I know what you mean about trying to make up for Gabe's past. I think he got the best Cmas present ever, with his new family.
I'll be sure to check in more often, now that I know my list is lying to me.

No worries! I find the same thing with the subscribed threads. I also find that I'll think I subscribed and then when I go to check it, I find the thread isn't part of my list afterall. Weird.

Okay, so with all the talk about the thwarted plane bomb incident, I'm starting to get very concerned about flying with all of Ali's medical stuff. She has meds that definitely will equal more than 3oz for the week and since they're all compounded, I'm sure as heck not going to check them. If our bags ever got lost, we would not be able to replace the meds easily and the cost to do so would be prohibitive. The formula and pedialyte I'm not worried about because it sounds like the HHC will ship directly there, but what about the meds? Anyone run into this?

 

[pipersmom]

I could be wrong, Kelly, but I know our chapter has told us to get a list of ALL her prescribed meds and equipment and have her Dr put that they must remain with Piper at all times. As long as you have that documentation, and all the meds are in original, labelled bottles the airlines can't give you any grief about them.

I've stopped bothering to subscribe to threads, I just go through every day and look for all the threads I've posted to (they have a check mark on the box.) With my dial-up it was taking me forever to go back and forth to the user cp!!

 

[pnutallergymom]

Okay, so with all the talk about the thwarted plane bomb incident, I'm starting to get very concerned about flying with all of Ali's medical stuff. She has meds that definitely will equal more than 3oz for the week and since they're all compounded, I'm sure as heck not going to check them. If our bags ever got lost, we would not be able to replace the meds easily and the cost to do so would be prohibitive. The formula and pedialyte I'm not worried about because it sounds like the HHC will ship directly there, but what about the meds? Anyone run into this?

Kelly,

Don't worry one bit about the meds. We have traveled twice with Brigitte. I have gotten a letter from her pediatrician/specialists that list all of the meds we are carrying on. I also bring them in the original prescription containers with her name and the drug name on it. Some need to be kept cold, so I bring a soft sided refrigeration bag and add an ice pack to it. I have never had a problem. The only time I had an issue was with benadryl. It is one of her meds, but was already in an open container and was more than 3oz. They did give me a some hassle with that, but I made sure it was on her med list and they did test it!! Bryan said I should have just let them toss it and bought another one...but I was pissed at that point and I like to argue!! I won!! Got to keep the bottle. This time, I will bring a small bottle that hasn't been opened yet.

The only other issue I had was with her sternotomy wires. I literally had to strip her down and show the scar as the TSA person could not believe that an 8mo old baby could possibly have wires in her chest that would set off the metal detector. He shut right up after I took her shirt off.....and apologized. I did have a letter about that as well, but I like I said, he just didn't believe me.

My guess is that things will calm down again soon...and by the time you go, unfortunately, they'll be back in their ho hum ways again!! Just bring all of your documentation. Are you flying out of Manchester or Boston?? MHT has a "medical line" that you can go through and it did save us some aggravation the second time we flew. I would ges that BOS does too.

Definitely ship as much down as you can. It is so much easier!! Do you use Infusion Solutions/NEHT? They are great about doing this. Just be sure to catch them before they ship your order to you for the month you are going...otherwise, you will have to ship it yourself right to the resort.

 

[yinyanggirls]

If your chapter is willing to ship stuff for you, maybe they could do it far enough ahead that you can verify it's arrival before you leave? If GKTW verifies receipt I'd feel more comfortable than trusting the airline! That is complicated. Security always takes longer with Phoebe because they have to check the chair separately. They wand it and also take samples from the cushions with needles (I guess to test for powders?). We are used to it and just try to allow a few extra minutes for this testing. When we get to the door of the airplane we then have to "gatecheck" her chair where a porter takes it under the plane and loads it there. I always get a little nervous letting her chair go, even though it's going right under the plane and not through the whole luggage system of the airport. I guess a wheelchair is easier to come by than meds in that situation. In the past we have carried her to her seat but it's been a few years. I think we might try the plane's aisle chair this time and see if it's easier. Even on Wish trips we don't get to leave these worries behind.

 

[dmbfan]

We had no problems with Jake meds and IV pump when we went there. We had our Drs notes and stuff and no one even looked at them.

NEHT shipped everything to GKTW and we had about three huge boxs brought to our villa shortly after arriving there.

For this trip, I talked to my nurse and they will ship everything for me so I do not have to deal with it, and since all his meds are in IV form, they will just send it down there as well.

I am hoping by the time we leave, all this airport hype will have slowed down.

By the way, I forgot to ask, what is Ali taking for formula now?

 

[Momofwishkid]

Good question Kelly, I had been wondering the same thing about the meds. Now I have my answers. Look like I need to contact Gavin's doc about a note. Does anyone know if it has to be a note from the prescribing doc or could it be just from a pedeatrician? Would be a pain to have to get a note from each specialist.

 

[dmbfan]

We got our note for our GI, but that is who does the TPN/IV Fluids, Tube feeds and his meds...so for us it was easy.

You just need one note stating how many meds your taking ( say you need to travel with 3 liquid meds and 1 pill med) and make sure it has the hospital's letterhead on the top.

Again they never looked at our letter, but I was told this is they ldrs like to do it...not sure what that means

 

[erika412]

Hi Kelly! I'm subbing.

 

[kellyw8863]

Kelly,

My guess is that things will calm down again soon...and by the time you go, unfortunately, they'll be back in their ho hum ways again!! Just bring all of your documentation. Are you flying out of Manchester or Boston?? MHT has a "medical line" that you can go through and it did save us some aggravation the second time we flew. I would ges that BOS does too.

Definitely ship as much down as you can. It is so much easier!! Do you use Infusion Solutions/NEHT? They are great about doing this. Just be sure to catch them before they ship your order to you for the month you are going...otherwise, you will have to ship it yourself right to the resort.

I imagine we'll fly out of Boston, though Manchester is closer for us. But being that we're going through the MA/RI chapter, my assumption is that they automatically go to Boston. We do use NEHT. That would be great if they would do a split order.

If your chapter is willing to ship stuff for you, maybe they could do it far enough ahead that you can verify it's arrival before you leave? If GKTW verifies receipt I'd feel more comfortable than trusting the airline! That is complicated. Security always takes longer with Phoebe because they have to check the chair separately. They wand it and also take samples from the cushions with needles (I guess to test for powders?). We are used to it and just try to allow a few extra minutes for this testing. When we get to the door of the airplane we then have to "gatecheck" her chair where a porter takes it under the plane and loads it there. I always get a little nervous letting her chair go, even though it's going right under the plane and not through the whole luggage system of the airport. I guess a wheelchair is easier to come by than meds in that situation. In the past we have carried her to her seat but it's been a few years. I think we might try the plane's aisle chair this time and see if it's easier. Even on Wish trips we don't get to leave these worries behind.

Do you know if they will "gate check" a stroller if you use that stroller as a "wheelchair"? If she's having a bad day, she'll need it right up to the last minute. Especially if it is early in the morning. I can't believe that they even test the stuffing in Phoebe's chair! I agree with you on shipping versus trusting the airline. I have had a bag lost before, and it stunk!

We had no problems with Jake meds and IV pump when we went there. We had our Drs notes and stuff and no one even looked at them.

NEHT shipped everything to GKTW and we had about three huge boxs brought to our villa shortly after arriving there.

For this trip, I talked to my nurse and they will ship everything for me so I do not have to deal with it, and since all his meds are in IV form, they will just send it down there as well.

I am hoping by the time we leave, all this airport hype will have slowed down.

By the way, I forgot to ask, what is Ali taking for formula now?

Does NEHT just do a split order? She really doesn't have that many supplies. She'll have the pump on her back, and then she'll just need the formula, pedialyte, extra bags, syringes...okay, I guess it's more than I thought, especially if I plan for worst case scenario (e.g. tape, gauze, extra button, etc.). For formula, she's taking Nutren Jr., though we're supposed to be trialing Boost because it has more calories but less volume. She doesn't like it, though. It makes her gaggy. In general, I don't understand why we're all of a sudden having stomach issues.

Good question Kelly, I had been wondering the same thing about the meds. Now I have my answers. Look like I need to contact Gavin's doc about a note. Does anyone know if it has to be a note from the prescribing doc or could it be just from a pedeatrician? Would be a pain to have to get a note from each specialist.

I hope that the note can come from a single source. Otherwise, I'll be chasing docs down from two different hospitals. Not fun!

I don't know what I'm still doing up. If Ali isn't considerably better tomorrow morning, we'll be heading into the ped, which means we'll probably be heading into Boston. I know something major is going on because she's having major GI issues that are the opposite of what we usually deal with, lots of leakage around her GT, and she's not tolerating much through the tube, which doesn't make sense to me. She'll nibble and actually ate a bowl of Spaghetti-Os for dinner, but after 15 minutes of having her pump run, she'll start crying for me to turn it down. I just can't wrap my head around the idea of an ICU stay over a sinus infection. I know it's because of the antibiotics, but it just seems like overkill. I should probably get some sleep because if she does end up being admitted, sleep will be hard to come by.

 

[kellyw8863]

Hi Kelly! I'm subbing.

Hello there! We posted at the same time. Good to "see" you here!

 

[yinyanggirls]

Yes, you can gate-check a stroller, even if it's not used as a wheelchair. Anyone can. Just inform the check-in people and fill out a different colored tag for it.

 

[dmbfan]

hmmmm, what is a split order...

Hope Ali is doing much better today..

 

[kellyw8863]

hmmmm, what is a split order...

Hope Ali is doing much better today..

1/4 of the order go to GKTW and the rest here. Unfortunately, she's not doing better and we're having a hard time putting the ephemeral "plan" into action. Dr. K. is out of town and the plan is not in the computer. I'm a bit frustrated right now.

 

[maroo]

1/4 of the order go to GKTW and the rest here. Unfortunately, she's not doing better and we're having a hard time putting the ephemeral "plan" into action. Dr. K. is out of town and the plan is not in the computer. I'm a bit frustrated right now.

oh no.

Praying for you guys right now.

 

[dmbfan]

Ahhh I see...I get weekly oders, so I am not 100% sure how that works. Just ask them they will be helpful.

Are you gettng the pedilyte covered yet?

 

[pnutallergymom]

NEHT will definitely do a split order. It is so much easier. I did make sure that I had them ship it down a few days before our arrival, that way I could call to be sure that they had it, just in case. Worst thing would be to get there and not have any supplies!!! I have never had an issue with any of it.

You can definitely gate check the stroller as well. We actually wheel Brigitte right onto the plane and put her in her car seat and then fold up the wheelchair. The only thing I will say is that we did have some issues with the bolts coming loose on her WC the last time we flew...It was just because of the bumping around under the plane that they shook loose. This time I will have Bryan pack his wrench etc. in his bag so that we can tighten things up when we get to the resort.

As far as the note goes, I just had my pedi write it for us. They did write the letter for her sternotomy wires separately, though. Made it easier to hand that specific letter to the person wanding her and not having to look through the entire med list!! We were actually able to just wheel Brigitte through the metal detector the last time since she can't walk really well. They did wipe it down with "detection" wipes etc...it wasn't much of a problem at all. Then they just wanded her down over in private space away from everyone.

It sounds so complicated, but as long as you have all of your documentation, you will be fine. Its more of a time consuming process, but does go pretty smoothly. I would definitely make sure to get to the airport EARLY....it does take a LONG time to get through security, especially since you will be going on school vacation week and the airport will be filled with families!!

 

[kellyw8863]

oh no.

Praying for you guys right now.

Thanks, Maroo.

Ahhh I see...I get weekly oders, so I am not 100% sure how that works. Just ask them they will be helpful.

Are you gettng the pedilyte covered yet?

All of Ali's are by the month. Nothing really expires, so I imagine that's why. No TPN or IV fluids here. Pedialyte is not covered yet, but that is my fault. I haven't done anything to request the letter of necessity. I've just been buying the WalMart brand, which is pretty inexpensive. And, she's not tolerating much through her tube, so it's lasting longer.

NEHT will definitely do a split order. It is so much easier. I did make sure that I had them ship it down a few days before our arrival, that way I could call to be sure that they had it, just in case. Worst thing would be to get there and not have any supplies!!! I have never had an issue with any of it.

You can definitely gate check the stroller as well. We actually wheel Brigitte right onto the plane and put her in her car seat and then fold up the wheelchair. The only thing I will say is that we did have some issues with the bolts coming loose on her WC the last time we flew...It was just because of the bumping around under the plane that they shook loose. This time I will have Bryan pack his wrench etc. in his bag so that we can tighten things up when we get to the resort.

As far as the note goes, I just had my pedi write it for us. They did write the letter for her sternotomy wires separately, though. Made it easier to hand that specific letter to the person wanding her and not having to look through the entire med list!! We were actually able to just wheel Brigitte through the metal detector the last time since she can't walk really well. They did wipe it down with "detection" wipes etc...it wasn't much of a problem at all. Then they just wanded her down over in private space away from everyone.

It sounds so complicated, but as long as you have all of your documentation, you will be fine. Its more of a time consuming process, but does go pretty smoothly. I would definitely make sure to get to the airport EARLY....it does take a LONG time to get through security, especially since you will be going on school vacation week and the airport will be filled with families!!

Thanks for the info! I just hate flying, period, which is probably where all my anxiety is coming from.

 

[dmbfan]

How did today go....please tell me your home...

Do you want more pedilyte, cause I can get an order and give them to you. I think I get 6 or so a month...

 

[kellyw8863]

How did today go....please tell me your home...

Do you want more pedilyte, cause I can get an order and give them to you. I think I get 6 or so a month...

We're home, and oh so very frustrated. We were there for an hour and a half, and Ali would not let the pediatrician near her. She threw a fit like I have never seen her throw. She would not even let him look in her ears, and she is known for being super cooperative. Heck, the last time she got an IV placed, she held her arm out for the nurse. But, that stupid PEG change ruined her. This is why I wanted sedation, and I'm so angry at myself that I let the GI talk me out of it.

So, we came home with a culture kit to try and do it ourselves. The thing with that is we won't be able to get one until tomorrow. That means driving an hour back there to drop it off. It won't be ready for 24 hours after that, which brings us to New Year's Day. And of course, the weekend has to follow the holiday, so we won't get any answers until Monday. So much for treating suspected/confirmed infections aggressively. CCS called around 4pm to see if we "got anywhere today." Ummm...No? I thought they were supposed to help with that.

And then for icing on the cake, the pediatrician announces, "I wouldn't be so concerned if her immune workup wasn't abnormal." Ummm...What? No one ever told us it was abnormal. He said he wouldn't consider it grossly abnormal, but he felt it was abnormal enough that her immune function is definitely a factor in all these illnesses and infections. I think this is the most frustrating day we've had in a long time. Looking at her, I'd put money on the fact that she has an infection, but instead of doing something about it, I guess I'm just going to sit here and hope that I am wrong.

I think I really just need some sleep. Tonight is Garth's turn to get up and wipe butt all. night. long. I'm beginning to think that constipation isn't such a bad thing afterall. But first, off for Mexican and a BIG margarita.

Thanks for asking. It's Garth's turn to put the kids to bed tonight so I'll look for you online (here or FB). If you're around and not doing anything, I'll give you a call. I'd love to hear how your Christmas was and how your Disney plans are coming along.

 

[erika412]

Oh no Kelly. What a day. You deserve a couple of those big old margaritas.