Noah is OK

Thank you to each of you for all of your prayers. Noah is OK. He is not great, as he is still fighting this cold, but there are no fevers, and he is enjoying this trip to its fullest. He and the other kids were tucked into bed tonight by Mayor Clayton after his surprise birthday party. We just spent the day here today enjoying the horse rides, pool time, candy land playground, etc. Our home care nurse (who is also in Orlando right now) came by for a tour and we are going to Seaworld together tomorrow. (I am not sure if she gets paid for watching Noah while we go on the rollercoasters ... but she should :) )

Keep Praying for Noah. So far so good, but we have a ways to go yet.

Friday Adventures

Seeing as I have to "check email" anyhow, I, Brad, am online and am able to give a brief update.

Today we went to Universal Studios Islands of Adventure. The park is split into 5 themed islands and everyone had a great time. The first, "Suess Landing" was a favorite. The best part once again was the amazing treatment by the staff. Once they see that Wish Button, they jump into action. If it is a ride, they have a personal escort take us to the front of the line through back doors and hallways. They are also great with special meetings with all of the characters from "Cat in the Hat" to "Spiderman" we met them all in a place that is out of the public chaos.

Back at Give Kids the World, tonight was the pirates and princesses party. It is another street party with many activities and plenty of dancing ending off with a corontation of all the kids on stage. Last night was Christmas with a full turkey dinner, followed by Santa (and gifts galore donated by Hasbro) and a parade to end the night. Tomorrow is a surprise birthday party for the Mayor.

Wish Trip Day 3

Unbelievable...amazing...I am unable to describe this place...how much our kids have done...how spoiled we have all been already. It has been a whirlwind, and I have realized there is absolutely no way I can keep up the blog. So you will all have to wait until we get home for a formal trip report with photos. We barely have time to breathe, but it's all fantastic!!

Noah was not well yesterday...his lungs have not been great and I was quite worried...he slept through most of Magic Kingdom. Today he seems perkier...please pray for health and that we can get through this trip without incident.

Today is Christmas here...the whole place is decorated and we are off to Christmas dinner, carriage rides, gifts from Santa and SO much more!!

Made It

I am just writing a quick note tonight for those checking in on us to see if we made it to Florida. WE ARE HERE. Was there ever any doubt that God would escort us all the way. We are at Give Kids the World. It is an Amazing Place and I (Brad) am already being spoiled ( any food / any time) not to mention the kids. Nichole will have a more formal posting tomorrow after our day at Magic Kingdom with pictures I am sure.

Keep Praying / They are working.

Brad

And Yet ANOTHER Package!!

We had another package arrive on Friday from Tracie, but it had to wait until today to be opened...

Personalized matching t-shirts for the whole family!!!


You'll have to wait to see mine at the park...

Thank you SO much Tracie!! These are SO cute and I love all the details!! I'm very excited for us all to wear them.

Our bags are now packed, except for Noah's TPN and meds which I have to do at the last minute. We have a couple of prescriptions to pick up on the way to the hotel tomorrow, but then we should be good to go!!

More Big Give!!

Another package arrived yesterday from Anna...
A great batman button up shirt and batman t-shirt. Joshua was very excited!! Here he is modeling them both together...

A very cute Tigger outfit for Noah...

It's a perfect fit!!

And thanks for the drawing, Lucas!!

Thank you SO much Anna!! We love the outfits and can't wait to show them off in Disney!

Another package arrived this morning, but that one will have to wait until Kailyn & Joshua come home on Sunday.

Officially Free!

We had our last clinic appointment today...and Noah is now officially free of that place!!

Clinic with our plastic surgeon was about as unenventful as I thought it would be. We were all in agreement that in light of the happenings of the past few months, palate surgery is not a priority. There is no benefit to fixing it at this point (except perhaps speech development, but that we don't know either), and there are many risks for Noah. The surgeon is most concerned of causing more respiratory issues. We will reassess in the future if things do improve with Noah's health. But for now, we will leave well enough alone!

Our TPN for the trip arrived today, along with an extra Prizm pump to take with us as backup. And our oxygen concentrator is being delivered to Brad's office. I have a bunch of running around to do yet on Saturday. Our friends have offered to take Kailyn & Joshua along with them to Thief River Falls so they are VERY excited. The original plan was for us all to go, but that was just too much. I'm so happy they still get to go! It will be so helpful to have just Noah home so we can get all the last minute stuff done!!

Some pictures from the package we recieved from the wish foundation with our tickets and spending money...


Inside the backpack were t-shirts and buttons for everyone, autograph books, stuffed animals and a blanket for Noah.

Noah being a ham at the dinner table with his new friend...he loves to imitate us!!

The Last Pokes!!!

Spent the morning at respiratory clinic and then bloodwork. Clinic was good...everyone is happy with the way Noah looks. His chest still has some junk, but it has improved and we have been able to decrease our Ventolin use. We did a throat swab, and depending on what the culture grows (he is usually colonized with something, even when he is not sick), we will get some antibiotics on Monday to take along with us "just in case he doesn't look right". Nice to have a bit of insurance! Bloodwork was rough, but they were Noah's LAST POKES before Disney!! One more clinic appointment tomorrow with the plastic surgeon regarding Noah's palate, and then we are not setting foot in a hospital again until we come home!!

I think I finally have our airline issues worked out, and we should be able to run our oxygen concentrator on the flight. Our home oxygen company should be delivering it here tomorrow or friday. Our TPN order should arrive tomorrow too, so we should have all our supplies in order by the weekend.

Only 6 more days until GKTW!!!!!!!!!!!!!!!!

5 more days until we leave home!!!!!!!!!!!

Someone from the local church is bring a hot meal tonight. We are blessed.

Even More Packages!!!

I'm having a hard time keeping up with all the pictures...we recieved 2 more packages yesterday!! The kids were excited that apparently Canada Post didn't have a holiday yesterday (sorry Steve!!). The first package was from Linette...

First there were tattoos, a coloring book and the most adorable Donald Duck outfit for Noah...

Wall-E and Indiana Mickey for Joshua, along with pants (love the mickey buttons on the pants!!). Joshua WAS more excited than he looks on the pictures...


Mickey Mouse and Princesses for Kailyn. I especially LOVE this first outfit...

Buzz and Cars outfits for Noah. The t-shirts have a little pocket that talks when you press it. So cute!! Noah was quite confused by it at first, but wanted us to press it over and over...

And the Donald Duck outfit. How CUTE is this?????

Wow, so much stuff!! Thank you SO much for everything!! It will be so fun showing them off in the parks! I cannot believe you say that you are not "excellent" at sewing. You did an amazing job and we love ALL the outfits!!!

The second package was from Denise...

"Oh, I have a good feeling about this one!!" she says as she sees the material...

Yep, she LOVES it!! And so do I!!!

Thank you so much Denise and family!! The outfit fits her perfectly and I love all the buttons!! (It's hard to tell from the picture, but the mickey mouse outline is made up entirely of buttons). OH, and we will be sure to eat lots of Disney popcorn for you!!

And, mom, these pictures are for you. So sorry it's taken me so long to get it on the blog. Here is Noah wearing the very cosy outfit that she had made for him by Myrna at Christmas. We love it and it's a perfect fit!!

I am still searching for a soft-side cooler on wheels for Noah's TPN that we can carry on the plane. If anyone knows where I might find one around here, or has one that I can borrow, we would really appreciate it!!

More Packages!!

Finally, the long awaited big give hospital pictures. Brad and the kids brought 2 packages to the hospital and we had such a blast opening them!! The first package was from Alison...

Inside were games, wall stickers for the kids rooms, a book for Noah and beautiful water bottle holders for Kailyn & Joshua...
And, the most adorable outfit for Noah!!! I waited until home to put it on him and take pictures...

My favorite part...
Alison, thank you so much!!! Kailyn & Joshua love the goodies...they were such a blessing to receive at the hospital. And we are all in love with the precious outfit for Noah!! Can't wait for him to wear it at Disney!!

The second package was from Carol (her family just came back from their wish trip recently).Joshua was so excited, he could barely look in the box...

Inside were so many goodies...I wish I had gotten more pictures! Disney PJs for all the kids, a Minnie Mouse for Kailyn, Wall-E for Joshua, and Tigger for Noah, plus lots of other treats!! Noah was thrilled with Tigger and gives him constant hugs!!Kailyn loves her princess pj's and her Minnie Mouse that she has been wanting so much!! Joshua loves his batman pj's and the removable cape!! And Wall-E was the biggest hit!! He adores it and has been trying to figure out how to fit him in his carry-on. I'm sure he will find a way!!
I will have to try and get a better picture of Noah in his cute Mickey Mouse pj's while we are at GKTW. Kailyn & Joshua refused to take off their new pj's and wore them home from the hospital! Think our kids are spoiled yet???

Thank you Nathan for the Mickey Mouse drawing...we had to show it off! The kids thought it was very neat that you had just been on a wish trip and they loved the drawing!! Carol and family, thank you so much for your generosity!! You brightened up our hospital stay and once again, we are overwhelmed!

Good to be Home

It's so good to be home. Still exhausted...overwhelmed...but happy to be home! 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!!! Kailyn & Joshua are at Gradma & Grandpa's for the long weekend, so it is quiet here. We dragged out the suitcases this morning, and I started the tedious chore of packing. So much still to be done, but at least I have begun!

Another blessing yesterday...we got a call from our wish coordinator to let us know that we have been given a night at the Sheraton hotel (which is attached to the airport) on the night before we leave! We literally get to sleep at the airport and eliminate the 45 minute drive to the airport at 2:30am!! A huge, huge thank you to Mary from Child Life for contacting the wish foundation and making this happen for us. You have blessed us...this will make our travel day so much easier!

Our church small group has a weekend at Thief River Falls planned for next weekend. Although we had planned to go, we have now decided it is just too much. We have neither the time, energy or money for it. So the plan is just to keep Noah 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!!

So much to post...so much to do...I will try to upload pictures soon. I am working a 12hr shift tomorrow, so I'm really feeling the time crunch here!! Thank you all for your prayers these past 10 days. Thank you also to Doris & Mary for keeping me well supplied with coffees. Oh, how I appreciated that!!

An interesting tidbit...Noah's NPA in hospital came back growing Hemadsorbing Virus. From my googling, it looks like a type of influenza...probably the cause of the pneumonia, and probably what the other kids had as well. We did give Noah a flu shot before leaving hospital to cover him from catching anything new.

Home!!

We are home!!!

Day 9

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. 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 a bit 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!! I will post pictures once I am home. 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...Noah is bored silly...we both can't wait to be home.

Day 7

Still here...

We've been able to come down to 2Litres 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. Our other issue is that I also thought that we had things organized with the airline and our oxygen use, however the airline is trying to make things more complicated. 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...probably doesn't help that I am so beyond tired. Praying that we will be able to wean him before our trip, and that the travel issues will get sorted out.

Day 5

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.

Disappointing, as I was really hoping for home by tomorrow. Instead I continue my lesson in patience...

Slowly...

Those lungs aren't bouncing back quite as quickly as I'd like...my patience is being tested, sitting in here...anxiously wanting to be at home doing last minute planning and packing. After a quiet night, Noah's lungs didn't sound so great this morning...we think perhaps we have been letting him go too long between ventolin masks. He had come off the oxygen for a while yesterday, but he is back to needing it continuously again today. So this morning we started scheduled masks for the next 24 hrs in the hopes of getting his breathing and wheeziness better under control. Never fun having to wake him during the night for the masks, but hopefully the morning won't be quite so rough for him.

Negative Cultures!!

Overall, a good day...

Best news of all...negative blood cultures!!!

We've all been holding our breath, waiting for the 48 hour marks...it has been a very long time since we've had a hospital admission that did not involve some type of bug in his line. But the ethanol locks are doing their job and his precious line is safe!! Still some rough patches with breathing, but we are headed in the right direction...hopefully back home in a few days once the breathing issues have settled...all "tuned up"...then off to the sunshine!!!

Improving

Amazing what a few good doses of antibiotics and a lot of prayer will do...

Noah is looking much better already this evening...sitting up and playing in his crib...banging on his drum with our wonderful music therapist, (always his highlight of being inpatient). He's still pretty tired, but his white count is coming down and no fevers today. So far his blood culture is still negative...final results will be back tomorrow afternoon. I will breathe easier once I know that his line is well.

Very thankful for the way he is looking tonight...

Update: Pneumonia

Noah was admitted to hospital this afternoon...his xray today showed the same pneumonia on the right side that was there last week, plus a new pneumonia on the left, along with an unbelievably high white blood count. The antibiotics we did for a week at home did not do anything for him. We've started some stronger IV antibiotics to hopefully kick this thing once and for all. We also have blood cultures cooking to make sure that his line is ok. Praying that it is just the pneumonia causing the high fevers.

He is looking ok this evening...we are settled in on CH5, surrounded by our "hospital family" who have told us this is just Noah's little "tune-up" before his big trip. Praying it's a quick one!! He is exhausted from all the work of breathing...but his breathing has settled this evening and we are hoping for a quiet night.

Downhill

Guess I shouldn't have posted that Noah was doing better...

Yesterday he began getting progressively worse again during the day and is now spiking high fevers...we are off to the ER. Please pray that his line is still safe and that we can get this pneumonia kicked once and for all. With less than 3 weeks to his wish trip, we are all very worried and discouraged...

Better

Noah is doing better today...the weekend was still a bit rough, but he is using less and less ventolin each day, so the Biaxin must be doing it's job! His chest still feels very cruddy, he is still using continuous oxygen, and that gut still isn't tolerating anything. But he is looking good...up and playing...giving us those million dollar smiles.

A couple pictures from our little Superbowl party last night...Noah flirting with his friend Mattea...watching the two of them play together is priceless...