Saturday, February 28, 2009
Keep Praying for Noah. So far so good, but we have a ways to go yet.
Friday, February 27, 2009
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.
Thursday, February 26, 2009
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!!
Tuesday, February 24, 2009
Keep Praying / They are working.
Sunday, February 22, 2009
Personalized matching t-shirts for the whole family!!!
You'll have to wait to see mine at the park...
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!!
Friday, February 20, 2009
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.
Thursday, February 19, 2009
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!!
Wednesday, February 18, 2009
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.
Someone from the local church is bring a hot meal tonight. We are blessed.
Tuesday, February 17, 2009
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...
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!!
Monday, February 16, 2009
And, the most adorable outfit for Noah!!! I waited until home to put it on him and take pictures...
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!!
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???
Saturday, February 14, 2009
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.
Thursday, February 12, 2009
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.
Tuesday, February 10, 2009
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.
Sunday, February 08, 2009
Disappointing, as I was really hoping for home by tomorrow. Instead I continue my lesson in patience...
Saturday, February 07, 2009
Friday, February 06, 2009
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!!!
Thursday, February 05, 2009
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...
Wednesday, February 04, 2009
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.
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...