Wish Trippers...Unite!! Volume One

[ndloewen]

Hello! I am new here and just wanted to join in on this conversation. We are going to be on our Make a Wish trip form January 18th to the 27. we will be staying at Give the Kids the World. Anyone else going to be there at the same time? We are traveling with 5 kids and a service dog. We are all getting so excited! The info on this board is wonderful and overwhelming at the same time.

Welcome here!! We are still waiting to hear our dates, likely the end of February for us.

 

[mom2lilnick]

Thanks Amber.. that is so beautiful!

 

[camarks1234]

I am just bawling right now. What an awesome and incredible story.

There is a little boy we've been praying hard for this week. He was AJ's roomie this last month at the hospital and is not doing well at all. Prayer does work. My own AJ is one of Riley's miracles. I BELIEVE! Jesse is a little boy (13) who needs all the prayers he can get this week. The Dr's told his mom to take her FMLA because they just don't think he's going to make it.

So if you BELEIVE, would you lift Jesse up in your prayers? Thanks. We're making Christmas cookies and candies to take to him right now.

 

[mindymouse1]

Wow!!!

 

[LindaBabe]

Wow, Amber. That's amazing!

Are you home safe and sound?

 

[maroo]

Maroo, thanks so much for all your help with picking dates! The crowd calendars are so helpful!!

I've emailed our dates to our coordinator, so hopefully I will hear something definate this week. Our dates in order of preference:

1) Feb 24-March 3
2) Feb 28-March 7
3) Feb 9-16

Hopefully one of those will work out. I will be SO excited to get those dates finalized!!

You are very welcome! Anytime...

and any other Wish families out there that need help with dates...I will be glad to help you guys...

Hello! I am new here and just wanted to join in on this conversation. We are going to be on our Make a Wish trip form January 18th to the 27. we will be staying at Give the Kids the World. Anyone else going to be there at the same time? We are traveling with 5 kids and a service dog. We are all getting so excited! The info on this board is wonderful and overwhelming at the same time.

Hello, Shanka! We are glad you are here! You have found the right place!

Do you want to do a pre-trip and trip report and tell us about it? It doesn't have to be fancy...

GKTW is completely AWESOME...FABULOUS! You will have a wonderful time!

Lauren keeps saying that she wants to get a service dog! We even looked into a "service monkey!"

Welcome!

 

[iu97alum]

Just popping in to say "hi" to all the newbies!! Welcome and like Maroo says don't be shy and start a PTR!!!

I'll be in and out all week. Emy got some sort of bug which means the u know what travels down hill and we'll all get sick this week. Though better now than Christmas right? Unfortunately, b/c of her being sick, we missed the best christmas party of the season (the one the hosptial puts on for the Cancer and Blood disorder patients) tonight. Probably a good thing since the metroplex is coated in ice now.... Just hope she recovers and Sami doesn't come down with it Thursday (It's their christmas program at school) since Emy has a speaking part!!

 

[macntosh]

I posted the following in my pre-trip, but in case you don't read that yet:

Nothing like a little excitment to go with some Pre-Trip Planning.

So yesterday I'm at work until 3:30 and after my shift get a frantic call from my wife. She is distraught and has no idea what to do. It seams that at some point that afternoon either during Aidan's PT or after he had chosen to remove his own Trach. Well for us this is the first time to have him do this. the problem was, It wasn't going back in, nor was she able to get in the smaller size.

Aidan for the last 3-4 months had been using a Cap on his Trach for about 95% of the time and we had been planning on removing it after the Cold and Flu season, but had been praying for healing. Was this the answer we had been looking for? Was this decision being made for us? What are we suppose to do? Do we have our answer, but now by fear we are trying to push something back in that isn't suppose to go back? We were at a loss, so I rushed home to find her quite emotionaly torn. However I don't think I have seen Aidan so happy.

We called his pulmenologist and he said to get to the ER and have them replace the Trach. So with heavy heart we drove to the ER, we were quite confused and even more not wanting to follow these directions. So what do I do, but call the church. I wanted people praying for us and we needed a little support. Well one of our volunteers picked up the phone and guess what, she is an ER Nurse Full Time. (Tears are flowing as I now type) She was calm and collected, agreed with our pulmenologist report, but listened to our concerns.

We were quite torn, we didn't know if we were listening or directing. Well she said the Lord is in control and let's pray for the Doctor's, not Aidan. Let's pray they listen to the Lord, allow him to make the decison through them and with Faith believe that this direction has come from him. So this is what we did. We arrived at the ER and they rushed us right into the room. Well you walk in with a 21 month old, who has removed his own trach and people do jump through hoops. Well we get in the room, nurses moving quickly and I say, hold on folks it's really not so bad, check his stats. He was statting at 100 oxygen level. He didn't need the tube, it wasn't such a rush. Well about 30-45 minutes later and a bunch of nurses scratching their heads the Dr. came in. See there is a rule that you DON'T remove trachs in the Winter, but the boy in front of them didn't want or need it back in, we thought.

He listened to our story and wasn't really sure, he said we would need to use a Trach Stretcher and put it back. We mentioned one of his doctor's, the one that did his Cochlear's was in the hospital and he know's him well. This Doctor knew Dr. Bauer and chose to call and discuss the child. I could hear him on the phone saying how healthy he looked, how he was doing really well, how there is "the rule", it was actually quite humerous and we couldn't tell what direction they were going. He finally came back and spoke with us. This was our answer, we were going to except it.

Well it seams by a 2-1 ruling the Trach was staying OUT . We were going to be checked into the PICU for observation overnight. I wasn't changing clothes, I wasn't eating, but sometime the next day if all goes well, my son was going home Trach Free.

Well I right this, this morning after a very calm night. No alarms, no stats below 97 and besides the ice and junk outside I think I'm waiting for a Dr. to come up this morning and release us.

Praise the Lord!

 

[camarks1234]

that is awesome macntosh!!!!!

 

[maroo]

I posted the following in my pre-trip, but in case you don't read that yet:

Nothing like a little excitment to go with some Pre-Trip Planning.

So yesterday I'm at work until 3:30 and after my shift get a frantic call from my wife. She is distraught and has no idea what to do. It seams that at some point that afternoon either during Aidan's PT or after he had chosen to remove his own Trach. Well for us this is the first time to have him do this. the problem was, It wasn't going back in, nor was she able to get in the smaller size.

Aidan for the last 3-4 months had been using a Cap on his Trach for about 95% of the time and we had been planning on removing it after the Cold and Flu season, but had been praying for healing. Was this the answer we had been looking for? Was this decision being made for us? What are we suppose to do? Do we have our answer, but now by fear we are trying to push something back in that isn't suppose to go back? We were at a loss, so I rushed home to find her quite emotionaly torn. However I don't think I have seen Aidan so happy.

We called his pulmenologist and he said to get to the ER and have them replace the Trach. So with heavy heart we drove to the ER, we were quite confused and even more not wanting to follow these directions. So what do I do, but call the church. I wanted people praying for us and we needed a little support. Well one of our volunteers picked up the phone and guess what, she is an ER Nurse Full Time. (Tears are flowing as I now type) She was calm and collected, agreed with our pulmenologist report, but listened to our concerns.

We were quite torn, we didn't know if we were listening or directing. Well she said the Lord is in control and let's pray for the Doctor's, not Aidan. Let's pray they listen to the Lord, allow him to make the decison through them and with Faith believe that this direction has come from him. So this is what we did. We arrived at the ER and they rushed us right into the room. Well you walk in with a 21 month old, who has removed his own trach and people do jump through hoops. Well we get in the room, nurses moving quickly and I say, hold on folks it's really not so bad, check his stats. He was statting at 100 oxygen level. He didn't need the tube, it wasn't such a rush. Well about 30-45 minutes later and a bunch of nurses scratching their heads the Dr. came in. See there is a rule that you DON'T remove trachs in the Winter, but the boy in front of them didn't want or need it back in, we thought.

He listened to our story and wasn't really sure, he said we would need to use a Trach Stretcher and put it back. We mentioned one of his doctor's, the one that did his Cochlear's was in the hospital and he know's him well. This Doctor knew Dr. Bauer and chose to call and discuss the child. I could hear him on the phone saying how healthy he looked, how he was doing really well, how there is "the rule", it was actually quite humerous and we couldn't tell what direction they were going. He finally came back and spoke with us. This was our answer, we were going to except it.

Well it seams by a 2-1 ruling the Trach was staying OUT . We were going to be checked into the PICU for observation overnight. I wasn't changing clothes, I wasn't eating, but sometime the next day if all goes well, my son was going home Trach Free.

Well I right this, this morning after a very calm night. No alarms, no stats below 97 and besides the ice and junk outside I think I'm waiting for a Dr. to come up this morning and release us.

Praise the Lord!

man...angels all around, I see. Wow!

I will continue to pray for you guys. That will be a relief, I am sure!

I hope you guys stay safe in this nasty weather! Check back in and let us know how he is doing! And just to think...he isn't even the wish child! You guys are a strong family.

 

[ndloewen]

Angels...yes!!

I posted on your trip report, but had to post again! Such wonderful news macntosh!!

 

[dmbfan]

Just wanted to say that I did a little pre trip report on Jake's MAW trip, and a little background on Jake. Since I can not put the link in my post, I did post his story on the pre trip board. I need four more posts...better start replying to myself



Thanks for reading

 

[dmbfan]

a couple more to go

 

[dmbfan]

Ok I feel really bad making this reply's just to get 10 posts...

 

[ndloewen]

Just wanted to say that I did a little pre trip report on Jake's MAW trip, and a little background on Jake. Since I can not put the link in my post, I did post his story on the pre trip board. I need four more posts...better start replying to myself



Thanks for reading

Yay, another pretrip report to follow! Off to find it!

Better start posting, lol!!!

 

[dmbfan]

Ohhh a couple more...sorry, I just really want to post the link

 

[dmbfan]

Ahhh a couple more...again sorry

 

[dmbfan]

Ok last one...Nichole, I think I know you from the TPN Yahoo board...I have read all about your sweet Noah...

 

[dmbfan]

Ok, Finally, again I am sorry. Here is his link....

http://www.disboards.com/showthread.php?t=2034240

Thank you for all that read it

 

[ndloewen]

Ok last one...Nichole, I think I know you from the TPN Yahoo board...I have read all about your sweet Noah...

Small world!!!!! When is your trip planned for?? (OK, ok, I'll go find your link!) We are still waiting for our dates to be confirmed (hoping for end of Feb/beg of March).