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

[3princesses+aprince]

Hello, I just saw that you and Noah were home, so glad to hear that he is doing well

 

[dmbfan]

Love the pictures, and the gifts are so special. So glad Noah's trip is going to happen, and more so that you are all home. You will be coming home a couple of weeks before we leave, so you will have to give me an update on how the TPN and and such went.

 

[ndloewen]

My trip ticker no longer says one month!!!!!!!!!! We are now counting in weeks!!!

Got a package from the wish foundation...more paperwork!! Another huge stack to sign...I think we've signed more for this trip that when we bought our home! I had to get our doctor to fill out more forms as well. Since so much had changed with Noah's medical condition since the start of the planning of this trip, we had to get our doc to ok him for travel once again. Love our doc! He had them faxed back to the foundation within a few hours!!

Oh, our package did contain a bit more than paperwork. There was also a hat for Noah, stickers, and Birnbaum's Disney World book. I had also picked up the Unofficial Guide last week with a gift certificate from Christmas, so we've been having lots of fun looking through the travel books.

I actually managed to get a shift in at work today which was a nice break from everything...spent my breaks browsing through the Unoffical Guide. I'm loving that book and I think I'm more excited than the kids right now!!

30 MORE DAYS!!!​

 

[VroomVroomLightning]

I am so happy that you and your family are going to be able to experience this togethr. I can't imagine a family who deserves this more than you and your family! I can't wait to hear some more of your planning!

 

[mom2lilnick]

Sounds like things are going well! You will have an awesome time!!

 

[ndloewen]

So I'm getting a bit worried again...

Noah's IV antibiotics to treat the e. coli infection ended on Friday. Since then he has not looked great. His chest is cruddy, his nose is a constant fountain, he's been sucking back the ventolin...likely just a virus he's picked up, but with Noah...it is always worriesome. At least no fevers, and we can keep him well hydrated with his line, but those lungs worry me.

Started doing some packing this weekend of Noah's supplies...yes, we still have a month to go, but preparing ahead, just in case a hospital stay is in the near future. I have learned from our last trip, and I am hoping to be more organized this time. I made up bags for each TPN hookup/unhooking so that we will just be able to grab a bag when we need it and it will have all the supplies in one place. Hopefully this will save me the grief of searching through bags, looking for supplies each day. Of course, I can't pack the actual TPN or meds yet, and I still need to figure out all the other supplies that we will need. But it's a start, and I no longer feel quite so overwhelmed with the thought of packing for Noah. I also now know exactly what I still need to order from our TPN company to make sure that we are covered for supplies when we get home as well.

 

[maroo]

Officially starting the prayer chain for Noah again. That worries me, too, honestly. Because that is almost the same thing you said last time...that it was a virus. But you have a line this time! So that is really good!!

You look so organized! I can't believe all of that stuff.

I believe God gave Noah to you because He knew you would take AWESOME care of him! You are as much a gift to him as he is to you.

I went walking today. I am training for a 13K race in DISNEY! In October. But anyway. I have downloaded some inspirational music on my iPhone and "Little is Much" is one of my favorites! It helps me keep going when I want to quit. Just one of the little ways your sweet Noah has touched a life of someone you guys have never even met.

 

[oklamomof4boys]

So I'm getting a bit worried again...

Noah's IV antibiotics to treat the e. coli infection ended on Friday. Since then he has not looked great. His chest is cruddy, his nose is a constant fountain, he's been sucking back the ventolin...likely just a virus he's picked up, but with Noah...it is always worriesome. At least no fevers, and we can keep him well hydrated with his line, but those lungs worry me.

Started doing some packing this weekend of Noah's supplies...yes, we still have a month to go, but preparing ahead, just in case a hospital stay is in the near future. I have learned from our last trip, and I am hoping to be more organized this time. I made up bags for each TPN hookup/unhooking so that we will just be able to grab a bag when we need it and it will have all the supplies in one place. Hopefully this will save me the grief of searching through bags, looking for supplies each day. Of course, I can't pack the actual TPN or meds yet, and I still need to figure out all the other supplies that we will need. But it's a start, and I no longer feel quite so overwhelmed with the thought of packing for Noah. I also now know exactly what I still need to order from our TPN company to make sure that we are covered for supplies when we get home as well.

I am sending out the email to my prayer group right now! Could they put him on another round of antibiotics? Please keep us updated!

Carol

 

[mom2lilnick]

Praying that Noah stays healthy. Hugs!

I remember Nick's TPN days all too well with those flashbacks. Hugs and more hugs.

 

[ndloewen]

Officially starting the prayer chain for Noah again. That worries me, too, honestly. Because that is almost the same thing you said last time...that it was a virus. But you have a line this time! So that is really good!!

You look so organized! I can't believe all of that stuff.

I believe God gave Noah to you because He knew you would take AWESOME care of him! You are as much a gift to him as he is to you.

I went walking today. I am training for a 13K race in DISNEY! In October. But anyway. I have downloaded some inspirational music on my iPhone and "Little is Much" is one of my favorites! It helps me keep going when I want to quit. Just one of the little ways your sweet Noah has touched a life of someone you guys have never even met.

Thanks so much maroo for the pick-me-up,

Yes, it is what I said last time...he just can't seem to shake the viruses lately with his damaged lungs. Although hopefully the better nutrition and hydration this time will help. This morning is no better, no worse. I'm hoping to wait out today as it is a busy day for the other kids (gymnastics and church clubs), but if his breathing gets any worse, we will be headed to the ER. If no improvement, I'll take him in to my ped. tomorrow.

Ok, I'm SO jealous that you are doing the Disney 13K!! I am SO going to do that someday! I did a half marathon here the year before Noah was born and loved it! Can't imagine how much greater being at Disney would be!!

Thanks Amy and Carol for the prayers!!

 

[maroo]

Thanks so much maroo for the pick-me-up,

Yes, it is what I said last time...he just can't seem to shake the viruses lately with his damaged lungs. Although hopefully the better nutrition and hydration this time will help. This morning is no better, no worse. I'm hoping to wait out today as it is a busy day for the other kids (gymnastics and church clubs), but if his breathing gets any worse, we will be headed to the ER. If no improvement, I'll take him in to my ped. tomorrow.

Ok, I'm SO jealous that you are doing the Disney 13K!! I am SO going to do that someday! I did a half marathon here the year before Noah was born and loved it! Can't imagine how much greater being at Disney would be!!

Thanks Amy and Carol for the prayers!!

You obviously have your hands very full right now! But that has helped me SO MUCH to get back into exercising. I finally found a great motivator! Disney!


Please keep us posted on Noah. We are praying!!! You guys hang in there!

 

[lizet313]

WOW What a Journey you and your family has had. I will be going to DW as well in two weeks. Feb 11-15 I am so glad your little boy's wish is coming true. Keep your hopes up your kids depend on you so much. You have a strong characteristic that it's called Motherhood. I understand you could never give your kids enough and wonder if there is something else you could do to help. Just remember you already give them everything they need The love the affection the care everything they could possibly look for and wait for. I will pray for your family and if there's anything I can do to help dont hesitate to ask. Wish you the best and can't wait to hear from your trip. Dont forget the pictures.

With love Lizet313

 

[oklamomof4boys]

How's our little guy doing? Okay, I guess technically he's not "our" little guy, but he certainly has a special place in all of our hearts! Of course, I feel like I "know" all of these special wish kids!

We've certainly been keeping up a prayer vigil around here!

Carol

 

[ndloewen]

So yesterday turned into a crazy day. I took Noah in to the pediatrician, who took one listen to Noah's chest and sent us off to the ER. I had been hoping to avoid having to go that route, but off to the ER we went. His O2 sats were low when we got there so we started oxygen and he got 3 back to back ventolin/atrovent masks which seemed to help open up his chest. Did a chest xray, bloodwork, blood gas and cultures. His bloodwork all looked good, and the cultures are pending, but the chest xray showed a significant pneumonia on Noah's right side. Thankfully the ER attending was one of the docs who knows us pretty well. So after a few hours of observation, he left the decision up to me. We could admit him, do IV antibiotics and oxygen, or I could take him home, do antibiotics and continuous oxygen at home. Since his bloodwork and gas looked good, no fever, and Noah himself looked ok, I felt comfortable taking him home. I just couldn't bear the thought of another hospital stay when we've only been home less than 2 weeks.

So we are home...for now. Hopefully this is where we will stay. The whole time we sat in the ER yesterday, I just kept thinking 26 more days! I am worried about how we will get through 2 weeks down there without some medical issue. But I have to believe that his lungs are going to do great in that magical healing Florida air!!

Got your package, Meg! What a wonderful surprise this was after our crappy day yesterday. Couldn't have come at a better time...will post pictures once things settle down here a bit!

 

[maroo]

So yesterday turned into a crazy day. I took Noah in to the pediatrician, who took one listen to Noah's chest and sent us off to the ER. I had been hoping to avoid having to go that route, but off to the ER we went. His O2 sats were low when we got there so we started oxygen and he got 3 back to back ventolin/atrovent masks which seemed to help open up his chest. Did a chest xray, bloodwork, blood gas and cultures. His bloodwork all looked good, and the cultures are pending, but the chest xray showed a significant pneumonia on Noah's right side. Thankfully the ER attending was one of the docs who knows us pretty well. So after a few hours of observation, he left the decision up to me. We could admit him, do IV antibiotics and oxygen, or I could take him home, do antibiotics and continuous oxygen at home. Since his bloodwork and gas looked good, no fever, and Noah himself looked ok, I felt comfortable taking him home. I just couldn't bear the thought of another hospital stay when we've only been home less than 2 weeks.

So we are home...for now. Hopefully this is where we will stay. The whole time we sat in the ER yesterday, I just kept thinking 26 more days! I am worried about how we will get through 2 weeks down there without some medical issue. But I have to believe that his lungs are going to do great in that magical healing Florida air!!

Got your package, Meg! What a wonderful surprise this was after our crappy day yesterday. Couldn't have come at a better time...will post pictures once things settle down here a bit!

Oh no!!!! Bless your heart!

So glad you are a nurse and can manage that stuff at home!

I am glad you are going to get two weeks...so you can take it easy and hopefully not have any issues!!

Keep us posted.

I could not decide yesterday if no news was good news...or not. But I am praying for you guys either way! And He knows!

Hang in there!

 

[iu97alum]

Bless your heart. Home always makes recovery easier!!

 

[lizet313]

Hope he is feeling better. My thoughts and prayers are with you and your family.

 

[oklamomof4boys]

I'm glad you are able to take care of him at home- I'm sure that will be much easier on all of you. We'll be praying that each day is better than the day before.

Carol

 

[autumnpalm]

Oh, I'm so glad it got to you!!

More prayers coming your way from Toronto.

 

[kimmylaj]

hope he feels better soon