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

[lizet313]

Praying for Noah and his family

 

[3princesses+aprince]

Still praying for you little Noah, The whole family as well, this must be so hard on everyone.

 

[ndloewen]

Thank you all for your prayers and comments. I was so looking forward to coming home and writing all about our fabulous trip, not giving updates from PICU again. To go from the high of GKTW to the low of PICU has been unbelievably difficult and I am quite an emotional mess these days. I am posting the update from my blog here...

Where to even begin...how can I even start to put this past week into words...definately one of the most difficult weeks I have been through...so disappointing to have the trip turn out this way. I had such high hopes...but, as we have been reminded once again, "the best laid plans"...We did have a wonderful first week, even though Noah was never great healthwise and wasn't able to enjoy everything as much as I had hoped he would. There were great, amazing times...I know there were...they are just very difficult for me to recall right now. I hope that once things calm down and we are home again, that I will be able to post pictures and write about the good times. But I think it will take me a while to emotionally work through all that has happened. Right now the disappointment and the emotions of the past week are still much too fresh.


There is much to be thankful for today...I am thankful that we were able to have 9 days together as a family in Florida...I am thankful that Kailyn & Joshua were able to have a wonderful holiday and be absolutely spoiled...I am thankful that we were able to get Noah home, where the hospital knows him, where we do not have to worry about insurance issues. We could be stuck in Florida right now in PICU. So thankful to be here. Thankful to have made it through an absolutely gut wrenching plane right home. Many miracles happened that day to get Noah back home. I honestly did not expect him to make it...he looked very, very bad on the plane and I was already planning how we would get his body home and everyone back for a funeral...it is an absolute miracle that we made it to the ER. Thankful that we were able to get flights so quickly...the last 2 tickets on those flights. Thankful for the angel I met on our first flight...the man sitting in seat 20F on that Thursday afternoon flight to Minneapolis, who helped me through the flight and off the plane, who gave me the hug I so desperately needed. Thankful that our portable oxygen lasted until we got to the ER. Thankful for Kim, who met me at the airport and got us to the ER. Thankful that Noah is now where he needs to be.


As for today's update...Noah is looking better today. He is still needing continuous CPAP and ventolin masks every 2 hours. RSV and asthma exacerbation was the diagnosis when he first came in, and he was sent immediately to PICU. After multiple masks, with no improvement, he was started on CPAP, which calmed him almost immediately. So he actually looked pretty good on the weekend. Then on Monday he developed a significant pneumonia in his right lung and started looking quite bad. His gases were getting worse and it was looking like he would end up intubated. However, he seems to be slowly settling out again and today he was more alert and sat up for a few minutes here and there.. Thankfully, he loves his CPAP, so we have been able to avoid intubation. And so now we continue to sit tight and wait. He has shown that he is still not ready for any weaning...hopefully in the next day or two we will be able to start. His blood pressures have become an issue lately and he is quite hypertensive. Right now, we are not treating it, but hoping that it will settle down on it's own as his health improves. His Gtube stoma has also become a huge issue, with prolapse of the stoma that will need to be surgically repaired, and constant leakage that is causing major skin breakdown. And to top it all off, he's got a very itchy yeast infection in his groin. Needless to say, he's still a pretty miserable little guy.

Thank you all for your many prayers. Please continue to pray for patience as we wait this out. I am exhausted and just so very anxious to be home

 

[maroo]

Gosh,

Nichole...

I am so sorry!! You must be totally exhausted. I don't think any of us know how you are feeling right now...but this has to be very, very hard...to go from GKTW to the PICU. My heart has been hurting for you so much for days now.

I am so thankful Noah made it home and have no idea how you managed that flight.

I am praying for all of you. I hope that Brad, Kailyn and Joshua had fun for the last few days that they were there...but I know they missed you and Noah.

I hope the trip was magical, despite how it ended.

I know you will post about your trip when you get ready. In the meantime, we are here praying for you. I check your blog every day...sometimes multiple times a day...to see how you guys are doing. I pray for you guys persistently, as you guys come to mind often.

We will all continue to pray. And post happy "hang in there" messages to you here on the DIS!

Hang in there!!!!

 

[DisneyMom5]

I am still praying for you all. You will be able to access those good memories later. Right now you can focus on being with Noah. (((hugs)))

 

[BrandyC1974]

Hi. I have been reading up on your pre-trip report but have not posted before. My prayers go out to your family. I hope Noah gets better soon. My daugther (now 11) suffered from RSV (she was born with spina bifida, hydrocephus, plus other stuff) when she was younger and it was a miserable time for her. I know how difficult this can be.

I pray for only the best for your family.

 

[LeeLee2U]

Oh Nicole my heart is aching for you and Noah. This was the second year Braeton did not get his synages shot and RSV was really bad @ here. I was so scared!
Thanks to Maroo for sending me here!

Please know you will all be in our prayers!!

 

[ndloewen]

Just when we were all beginning to get quite concerned with Noah's continued dependency on the CPAP, he decided that today he was done with it. The plan this afternoon was to try to switch him from a full face mask to a nasal CPAP mask, so that we would be able to transition to the ward more quickly. But Noah was very, very unhappy with just the nasal mask and kept trying to pull the whole thing over his mouth...yes, he was very attached to his full mask!! After a big wrestling match with 4 of us trying to hold this mask over his nose, we decided to just take the whole thing off and see what he would do. He has spent the whole evening a much happier boy, with just oxygen by nasal prongs and doing very well maintaining his sats. He is still very ventolin dependent, but this has been a major victory today! We will see how the night goes, as he always has more difficulty when sleeping. He may need to have the CPAP back on for the night, but if we can keep him off while he is awake, then we are one step closer to home.

 

[3princesses+aprince]

So glad to hear Noah is doing better today, I hope it continues through the night.

 

[eyor44]

still praying for Noah.

 

[maroo]

Woo Hoo! Noah!

Keep going buddy!

We are praying for you all! I hope you are able to get home soon and "decompress" from your wonderful trip!!!!

Praying persistently.

 

[kdzbear]

I am so glad he is doing better. I check his updates everyday and pray for you, Noah and the rest of the family. We will continue to pray that he can come home soon!

 

[MAKHayes-DisneyDiva]

Noah is such a fighter! I loved reading about his opinion of which type of CPAP he wanted. I know the trip ended badly, but hopefully in the near future you, your family, and a healthier Noah can look back at the great times you had on your wish trip.
I am keeping you in my prayers.

 

[maroo]

This was posted on Noah's Blog yesterday! Just wanted to let you guys know the good news!

Many prayers are still needed for them!


Home again...

Noah was discharged yesterday, so we are finally all home!! Praying we can stay home for a while. His stoma is still quite bad, so we pulled his g-tube out and are just doing dressings with Flamazine in the hopes that we can get the skin around it to heal. There is so much mucosa that has prolapsed, that it will likely hold the hole open until we can get it repaired. He is unable to have surgery until the RSV is well behind him...not until closer to the end of April. So for now, we have put an NG tube in to drain his stomach. He is very tired today...not quite himself. Hopefully he is still just recuping.

It is so good to be home...a bit overwhelming as there is still suitcases to unpack and so much to catch up on...but at least we are home.

 

[macntosh]

Congrat's Noah!

 

[ndloewen]

Thanks for all your kind words and prayers. We are finally all home and trying to adjust back to life here again. We have spent the last couple of days looking at all the pictures and the wonderful memories are all starting to come back. It really was an amazing trip...a trip of a lifetime, despite how it ended. I promise to work on a trip report in the near future. Right now it is just too overwhelming and I think we are all feeling a bit lost these days, with no trip to look forward to. I have missed the boards and I'm looking forward to feeding my Disney addiction soon!

 

[llurgy]

 

[maroo]

what she said...(And way to go using ALL 25 icons!!!)...so I can just echo!!!

I am so glad you are home. And so glad you are already looking back on your trip with a smile on your face!

We can't wait to hear all about it!

 

[3princesses+aprince]

Aww, so happy to hear that Noah is home! I hope all goes well and you can remain home for a long time.

 

[ndloewen]

Sorry for the lack of posts. I am still here...mostly lurking on the boards lately. Noah's been sick...now I'm sick...uggg...

I am hoping to tackle a trip report soon. It just seems like such a daunting task right now, but I do promise I will get there!! We've all been trying to adjust to real life here again. It's been tough.