Noah's Wish Trip (Wings ~ July 29, 2009)

[ndloewen]

Still in hospital...still no discharge plan...2 weeks to go...

We've been able to come down to 2 litres on Noah's oxygen, but seem to be stuck there. We are waiting to see respirology to re-evaluate what is going on and what our plan should be. Still hoping that we can wean Noah off the oxygen soon, but that may not happen as soon as we'd like. So talk today is of the plans that need to be put into place in the next two weeks for our trip to happen...he may need continous oxygen while we are there. I'm really disappointed about that as it will just make things more complicated.

Our other issue is that I also thought that we had things organized with the airline and our oxygen use, however the airline (Air Canada) is trying to make things more complicated. They are now saying that we can only use their high cost oxygen and are not allowed to run the portable oxygen concentrator that we already rented, even though their website clearly says that it is approved!! So between the airline, our home oxygen provider, respirology and the wish foundation, I am getting nervous about the last minute details that need to be ironed out between them all.

Seems all a bit overwhelming today and wishing it could just be easier. I think I'm just really tired today...tired of it all. Praying that we will be able to wean him before our trip, and that the travel issues will get sorted out. Praying we will just get there and be out of here!! Praying that tomorrow is a better day.

 

[autumnpalm]

Oh, you are getting so close. I pray for little Noah and the rest of you every single night.

That sucks that Air Canada is making things so difficult. Definitely makes me think twice about flying with them in the future. For them to make you jump through hoops like that is just wrong- you have so many other more important things to concentrate on.

I hope Noah can get weaned off his oxygen!

 

[maroo]

Aw... You must be totally stressed!

Ok...Airplane oxygen is added to my list for sweet Noah!

Those folks at Air Canada need to get on the bandwagon! Because we are going to get this sweet family to Disney !!!

Hello, Air Canada - Come on, dudes!!

We continue to pray for you guys!

Thank you so much for the update!!!!!!

 

[3princesses+aprince]

Thank you for the update, always wondering how the little guy is doing. I'm so sorry that you have to sit there hoping everything will be in place for your trip. I wish we were all closer to you and could help you get everything packed and work out all of the kinks.

Goodnight

 

[twob4him]

A long day...weekends are always long here, and it's been a frustrating day dealing with the lack of communication from the team that is on call. Noah's oxygen requirements have been increasing overnight and today, instead of the decreasing I wanted to see. He has gone from needing 1Litre yesterday to 3Litres today and we are having to do even more frequent masks. His chest xray this morning did look improved from Wednesday, so it seems that we are kicking the pneumonia. But it is the asthma/reactive airway stuff that is the main issue now. We started a course of IV prednisone (steroids) today, so hopefully that will help open up those lungs. Despite this all, Noah is in pretty good spirits and we are both starting to go a bit stir crazy in here.

I've read my Unofficial Guide from cover to cover...made about 10 different packing lists...finished all my medical letters and updated Noah's medical history to take along with us...wanting to call the airlines to try and change our flight, but I just want to be home first and know for sure that this trip will happen!!

Macntosh...I haven't heard of the dome mask, but I will ask respiratory about it next time I see them here as we all need some sleep around here!

I know this won't help the recovery from the pneumonia but has Noah ever tried Advair? Its the purple circular diskus. I struggle with restrictive airways and have been on all kinds of different meds for it. But nothing and I mean nothing helped me the way Advair did. Just a thought...but it may be worth a try.

Still in hospital...still no discharge plan...2 weeks to go...

We've been able to come down to 2 litres on Noah's oxygen, but seem to be stuck there. We are waiting to see respirology to re-evaluate what is going on and what our plan should be. Still hoping that we can wean Noah off the oxygen soon, but that may not happen as soon as we'd like. So talk today is of the plans that need to be put into place in the next two weeks for our trip to happen...he may need continous oxygen while we are there. I'm really disappointed about that as it will just make things more complicated.

Our other issue is that I also thought that we had things organized with the airline and our oxygen use, however the airline (Air Canada) is trying to make things more complicated. They are now saying that we can only use their high cost oxygen and are not allowed to run the portable oxygen concentrator that we already rented, even though their website clearly says that it is approved!! So between the airline, our home oxygen provider, respirology and the wish foundation, I am getting nervous about the last minute details that need to be ironed out between them all.

Seems all a bit overwhelming today and wishing it could just be easier. I think I'm just really tired today...tired of it all. Praying that we will be able to wean him before our trip, and that the travel issues will get sorted out. Praying we will just get there and be out of here!! Praying that tomorrow is a better day.

Many prayers for you and Noah! I hope the airline gets themselves together enough to realize they are telling you two different things. Yeesh! I hate that!

 

[msce2]

Praying daily for Noah and your family.

 

[kimmylaj]

just popping in to say i'm thinking of you

 

[ndloewen]

Finally...we have a plan!!

A frustrating day yesterday, as it seemed we were not getting any closer to discharge planning...but finally we have a plan for home tomorrow!! Noah has done a fabulous job of weaning off the oxygen, so no daytime oxygen!! The respirologist was shocked when she came to see us and saw that he had weaned from 2 Litres to room air in one day. So thank you for all your prayers...those lungs are healing, and we don't have to worry about continuous oxygen for our trip. He will still need it for the plane and for night. Tonight we will do an overnight oximetry study to reassess his oxygen needs for sleeping. Our home prescription has been left pretty wide open for us though which is good...we will be taking a sat monitor home, and depending on his sats, we can use his oxygen for night and as needed during the day.

We will finish out Noah's 7 day course of Prednisone at home, and his IV antibiotics, which will finish the day we are scheduled to leave for Noah's wish trip. We will then start him on a prophylactic antibiotics three times a week. His lungs still don't sounds great, and our pediatrician was hesitant about discharge, but they are no longer doing anything for Noah here that we can't do at home.

Brad brought the kids to the hospital yesterday and we opened 2 big give packages we had received in the mail. What a bright spot that was for us and so much fun!! Thank you, so much Carol and I couldn't find who the other one was from (it contained an adorable pooh bear outfit for Noah plus other goodies)...I hope you identify yourself so I can thank you too!! I wish I could explain what these packages meant to us...they were pure gold for us yesterday and could not have come at a better time. I will post pictures once I am home for you all to see. We also got our welcome letter from GKTW. The kids were squealing so much that we had all the staff coming in here to see what was going on. Everyone was so touched and amazed by your generosity!!

Slowly things are falling into place, and we are feeling much more optimistic about this trip actually happening. Still airline issues to work out, but I will wait until we are home to tackle that project. I am exhausted today...I have not stepped out of this hospital at all in the past 9 days...Noah is bored silly and still isolated in his room...we both can't wait to be home.

 

[autumnpalm]

Oh, I am so so happy that Noah is off oxygen during the day. What great news!

I hope your time at home goes smoothly and you don't have any more scares before your big trip. I will be praying for you every single night.

 

[macntosh]

Wonderful news I look forward to celebrating with y'all in just a few days. Can you believe it? Just a few days! I'm getting nervous.

 

[maroo]

Yea!!

I posted on your blog, but thought I could come over here and celebrate too!



Plus I get to use all of these fun smileys!

I am getting excited for you guys again about your trip. Sounds like it is going to work out GREAT! Just finishing those antibiotics as you are jetting off! And no continuous daily O2...sounds awesome!

 

[3princesses+aprince]

Oh that is such great news. I am so HAPPY for you guys. I will keep praying that Noah stays nice and healthy for a wonderful wishtrip! You must have so much to do to get ready. Don't be overwhelmed though, have fun with all of the packing and getting ready.
I hope everything works out well with the airline too!
So happy for you today!

 

[MAKHayes-DisneyDiva]

I am praying that Noah stays healthy and the trip is a wonderful experience for all of you!

 

[VroomVroomLightning]

YAY!! I just checked Noah's blog and they were able to come home yesterday!! So happy for you guys and I cannot wait to hear about the rest of your planning!! You and your family deserve this more than any family I know. Such a strong family and so deserving

 

[oklamomof4boys]

I am so glad you are home! Maybe now you can get some sleep and get all the details finalized for your trip!

I am so glad you got the package- I don't know how to sew, but I do love to shop!

Continued prayers for all of you- I can't wait to go to church tomorrow and tell everyone Noah is out of the hospital! Everyone has been asking!

Carol

 

[ndloewen]

Yes, we are home!!
Exhausted...overwhelmed...but happy to be home! Thank you all for your kinds words and prayers these past 10 days. Noah is still struggling a bit with those lungs, but we are carrying on in faith that things will continue to improve and we will be off to Disney in less than 10 days!!!

Another blessing yesterday...after talking with me in hospital about our crazy 5am flight, one of the child life staff asked for our wish coordinator's phone number. She comes back and tells me that she just called and asked for a night at the Sheraton hotel, which is connected to the airport to make our travel day a bit easier. Later that day, we got a call saying that the request was approved and we now have a night on the 23rd! So we literally get to sleep at the airport and eliminate the 45 minute drive to the airport at 2:30am!! So our new plan is that once Brad is home from work on the 23rd, we will head for the hotel, check in, order pizza and get some sleep!!

We have decided to cancel our weekend at Thief River Falls (for next weekend)...it is just too much. We have neither the time, energy or money for it. So no going away party for Noah...we are just planning to keep him home, away from as many people as we can until we leave. if I could put him in a bubble I would!! The hotel at Thief River can also be quite smoky (it's a casino and smoking is permitted)...not a good place for Noah's lungs! A disappointment for the other kids, but I think Disney will make up for it!!

So much to post...so much to do...I will try to upload big give pictures later once I tackle this disaster of a house. How does it get to look so bad when I am away?? I am working a 12hr shift tomorrow, so I'm really feeling the time crunch here!!

 

[macntosh]

Yes, we are home!!
Exhausted...overwhelmed...but happy to be home! Thank you all for your kinds words and prayers these past 10 days. Noah is still struggling a bit with those lungs, but we are carrying on in faith that things will continue to improve and we will be off to Disney in less than 10 days!!!

Another blessing yesterday...after talking with me in hospital about our crazy 5am flight, one of the child life staff asked for our wish coordinator's phone number. She comes back and tells me that she just called and asked for a night at the Sheraton hotel, which is connected to the airport to make our travel day a bit easier. Later that day, we got a call saying that the request was approved and we now have a night on the 23rd! So we literally get to sleep at the airport and eliminate the 45 minute drive to the airport at 2:30am!! So our new plan is that once Brad is home from work on the 23rd, we will head for the hotel, check in, order pizza and get some sleep!!

We have decided to cancel our weekend at Thief River Falls (for next weekend)...it is just too much. We have neither the time, energy or money for it. So no going away party for Noah...we are just planning to keep him home, away from as many people as we can until we leave. if I could put him in a bubble I would!! The hotel at Thief River can also be quite smoky (it's a casino and smoking is permitted)...not a good place for Noah's lungs! A disappointment for the other kids, but I think Disney will make up for it!!

So much to post...so much to do...I will try to upload big give pictures later once I tackle this disaster of a house. How does it get to look so bad when I am away?? I am working a 12hr shift tomorrow, so I'm really feeling the time crunch here!!

I think when they see Cinderella's Castle, Thief River will be a distant memory. I sent you a pm about the other item and am checking shipping windows. I think we can make it work!

 

[autumnpalm]

Oh I am so happy to hear that Noah is home!!! What wonderful news.

Continued prayers for your whole family!

I really hope you write a TR... I can't wait to hear about how your trip went!

 

[maroo]

Oh I am so happy to hear that Noah is home!!! What wonderful news.

Continued prayers for your whole family!

I really hope you write a TR... I can't wait to hear about how your trip went!

Amen to the "I hope you write a TR!"

I have no doubt that Nicole will write one!! Most of these guys that have blogs and blog all of the time have GREAT TR's!




I am so glad that you guys decided to cancel the trip over the weekend. Sounds like a very wise decision! And I agree...that Castle will make up for ALL of that!!!


I hope you are feeling better...now that you guys are home! I am getting so excited for your trip!!

 

[kimmylaj]

i am so glad to hear that noah is home. i truly feel like i know you guys and i think about you quite often. my mom and my husband both ask about noah all the time. i am so glad to be reporting that he is home hooray. its almost time for the single digit dance . woohoo