Make a Wish (and other organizations!) - Wish Trippers...UNITE!! Volume 2!

[Corrine 1973]

I will definitely be praying for you guys!

I am writing this from a hospital room tonight with my friend Rachel. She is here tonight hopefully for a "quick" fix of a very scary problem. She went from fully functioning speech/cognition to talking in random phrases and crying or laughing.

They think it may be something simple...(Na+ is really low) or it could be a brain infection (obviously more serious). But right now she is resting...for the first time in days.

Thank you all for your prayers for Rachel and her Mom.

Prayers to Rachel and her mom!

Got back from Missouri last night. Will put a little of our trip in our PTR!!!

 

[Somer]

We finally got our dates!!! October 2nd-8th

 

[StefaniLyn]

We finally got our dates!!! October 2nd-8th

YEA FOR DATES!!! And woah - Oct 2nd will be here before you know it!

 

[Matt1026]

We finally got our dates!!! October 2nd-8th

I am so excited for you It makes it so much more real having those dates!!!!

 

[tastycollector]

I forgot how to start a thread so that I can start Dev's TR! Can anyone help?

 

[that's nice]

We finally got our dates!!! October 2nd-8th

Congrats on the dates!!!!!

We will be there the same time as you!!!! We are arriving on the 3rd and leaving on the 8th!

 

[MomTo4+more]

we spent all day in the ER yesterday. We still have no answers. They did find out his right kidney is enlarged, but the doctor said that was probably congenital. The thing is it was NOT enlarged on the previous ultrasounds and abdominal CTs. I left a message for Deyki's doctor and hope to hear back from her today.

In the middle of waiting for answers that never came yesterday, I got an e-mail from MAW. We are totally confirmed for November 1-7 at GKTW!!!! They will be working on flight arrangements in the next couple weeks!

The good news helped soften the fact that we were back at the hospital and likely will be at least a few more times soon.

 

[maroo]

URGENT Prayer Request...


NOAH is in the hospital and does not sound well...

Here is his blog...

Please, please pray for Noah and his family.

http://noahgrantjohn.blogspot.com/

 

[StefaniLyn]

I forgot how to start a thread so that I can start Dev's TR! Can anyone help?

Try clicking here:

http://www.disboards.com/newthread.php?do=newthread&f=18

it should create a new thread for you in the "Trip Reports" forum! I can't wait to start reading!

 

[StefaniLyn]

we spent all day in the ER yesterday. We still have no answers. They did find out his right kidney is enlarged, but the doctor said that was probably congenital. The thing is it was NOT enlarged on the previous ultrasounds and abdominal CTs. I left a message for Deyki's doctor and hope to hear back from her today.

In the middle of waiting for answers that never came yesterday, I got an e-mail from MAW. We are totally confirmed for November 1-7 at GKTW!!!! They will be working on flight arrangements in the next couple weeks!

The good news helped soften the fact that we were back at the hospital and likely will be at least a few more times soon.

I hope they find some answers for Deyki soon. Waiting sucks! Did they admit him?

And YEA for dates!!!!

 

[Matt1026]

URGENT Prayer Request...


NOAH is in the hospital and does not sound well...

Here is his blog...

Please, please pray for Noah and his family.

http://noahgrantjohn.blogspot.com/

Maroo - we will be praying. Keep us informed.

 

[Eeyores Butterfly]

Maroo, thank you for posting that. Noah and his family are in my prayers.

 

[wkualum]

URGENT Prayer Request...


NOAH is in the hospital and does not sound well...

Here is his blog...

Please, please pray for Noah and his family.

http://noahgrantjohn.blogspot.com/

Prayers lifted for sweet Noah!!

 

[wkualum]

Well I finally got the call! We will be leaving Louisville on October 10th and returning on October 16th.

Let the real planning begin!!!

 

[keetmommy]

Oh no I will be praying for him!

 

[Corrine 1973]

My prayers for Noah and his family.

 

[StefaniLyn]

Well I finally got the call! We will be leaving Louisville on October 10th and returning on October 16th.

Let the real planning begin!!!

YEA for dates!!!!!! Woo Hoo! Have fun planning! Will you be starting a pretrip report?

 

[5dwarves]

Well I finally got the call! We will be leaving Louisville on October 10th and returning on October 16th.

Let the real planning begin!!!

What a wonderful time of year to go! The weather should be good and the crowds low. Awesome.

 

[5dwarves]

Reid is my youngest son. He is 2. He was born at 28 week at only 2lbs 14 oz and 14 inches. He faced a lot of challenges and didnt come home until he was exactly four months old. I mention a lot in my TR how miserable he was constantly in WDW. I would like to mention here that we just found out that he might have Sensory Processing Disorder, hence his exteme frustration in a place as busy and as loud as WDW.

Hey TLM...I am glad to see that you were directed to the wish thread. Maroo and the wish families will take good care of you here. My wish child has sensory issues as well. We originally received an autism diagnosis, but the neuro psych rescinded that and we got the "we don't exactly know" diagnosis. He does have autistic characterisitics though, and I have found a lot of the info on the dis from autism parents helped me. I know that Reid is very young so that presents additional challenges. I haven't made it over to your TR thread yet, so I am not sure if you have already gone on your wish trip or not. If not, there are some tips that may help with Reid a little bit....inexpensive foam ear plugs from Walmart helped us, as did the WDW stroller (aka Magic Carriage). Having a small sanctuary for Adam within the stroller was a blessing. Even when it was crowded around him, he still had his personal space in the double stroller. There is a lady on the dis who did a social story/guidebook for her older autistic child. It is fantastic. Maybe a homemade WDW picture book can prepare Reid for the visual stimulation and help him through the day while you are there. Here is the link to the thread on the autism guidebook. Let us know if we can help with anything.

http://www.disboards.com/showthread.php?t=1774902

Elisa

 

[maroo]

This precious boy has beaten the odds no less than 4 times since I have "known" them last year. Christmas, January, February and on the way home from his Wish trip.

I know he must be really tired. He does not seem to be responding to the things he normally responds to.

Here is the last update in the words of his Mom and then his Dad...


Things are rough here...we are living hour to hour...things are still critical. The night was very rocky with worsening blood gases. Noah is proving to be very difficult to ventilate. His asthmatic issues really complicate things, causing these long, forced expirations, that do battle with the breathes the ventilator is trying to give him. Ketamine has been added to his ever growing list of drugs to help with the asthmatic issues, as well as lots of ventolin. Many ventilator changes to try and find a happy place for Noah, but we still don't seem to be there yet. Gases are still bad, but not worsening this evening. Noah's blood pressure has begun to drop...he recieved more albumin and a dopamine infusion was started. He is still spiking crazy high fevers and his kidneys are not functioning well. Nothing has grown so far on any of the cultures and H1N1 results won't be back until tomorrow. So really, not definative diagnoses yet other than ARDS (acute respiratory distress syndrome).

Line access, as always, has been a major issue again, as Noah is needing more and more meds. Since our central line is only a single lumen and Noah needs that for his TPN, more access was quickly needed. The docs managed to get a double lumen PICC line in his femoral vein, but because of so much scarring, were unable to thread it much. Hopefully it will at least buy us some time.

Praying once again for another miracle.

(Update: 2:00 am July 29 ... Nichole called me (Brad) in early this morning because Noah was going downhill very fast. The Doctors were not sure if he would make it through the night. Noah is currently on medication to sustain his blood pressure and effective heart beat, he is also on the oscillating ventilator and kidneys have shut down. More updates to come as there are any.)