Tuesday, March 31, 2009

Welcome Silas Paul

Welcome our newest nephew, Silas Paul, born Saturday March 28th at 10:51am. A big boy at 8lbs 14oz, 23inches!! Congrats Jamie & Erik!! (Hope you don't mind that I posted this picture.) Can't wait to meet you, Silas!! I SO wish we lived closer!

Sunday, March 29, 2009

Disney Wish Trip

I have finally begun the daunting task of documenting our Disney wish trip!! Since this will be an ongoing project, I have decided to start a new blog. I hope to post lots of pictures of our trip over the next few weeks.
Noah is still "ok"...still not great...still very wheezy. But he does seem to be perkier, so I am hoping we are seeing the tail end of this nasty virus. His weight is up to 18lbs 13oz...YAY!!!

Wednesday, March 25, 2009

Happy Birthday Kailyn!!

Kailyn is 9 today. 9 years...honestly, where has the time gone??

We are in the middle of a winter storm here, so Kailyn was very excited to have school cancelled on her birthday. This evening we had a quiet family celebration with pizza, orange pop and cake decorated by Kailyn.

Kailyn, we love you so much. We love your chattiness, your creativity and your sense of humor. We love how how feel each emotion to the fullest, and embrace life with such enthusiasm. We love how you care for your little brothers and for others. You are very special and we know that God has great plans for your life. Happy Birthday!! (And Happy 60th Birthday to Grandma today too!)

Jamie, did that baby forget it is supposed to be born on Kailyn's birthday??? Ok, baby, you can come now!!

Tuesday, March 24, 2009

Still home

A quick update...

We are still home, waiting this out. Noah is quite up and down...looking good for a while, then looking yucky again. He is requiring his oxygen throughout the day, but I do think his lungs are sounding better than a couple of days ago. I seem to have picked up this virus too and feel pretty wrung out myself.

Sunday, March 22, 2009


I would love to be able to post that Noah is well, but once again, he has managed to catch yet another virus. He must have brought it home from the hospital, as his symptoms started Thursday morning already...runny nose, cough, rattly chest...very much a repeat of how he looked in Florida. We have added Singular to his list of asthma meds, and so I'm hoping that he will be able to fight it off this time. However, with the RSV and pneumonia being so recent, I am concerned once again about those lungs. No fever, and acceptable O2 sats, so for now, we wait this out again and try to get in as many home days as we can.

I am so very tired of this constant state of instability.

Thursday, March 19, 2009


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.

Monday, March 16, 2009

Day 12

Noah is doing well on the ward...almost completely weaned off the oxygen during the day, as well as the ventolin. He is getting pretty bored (still isolated because of the RSV)...he has once again bounced back just as quickly as he went downhill. I do not know how his tiny body can fight so very hard. He continues to amaze me.

The issue we still need to resolve is his stoma breakdown. We are waiting to hear back from the surgeon...and if the plan is still to wait on surgery, then hopefully we can talk about plans for discharge.

Definately going stir crazy here now, with Noah looking so much better...we just want to be home!

Saturday, March 14, 2009

Back on the Ward

Noah has done so well off the CPAP, so yesterday evening he was moved to the ward. So we are once again on CH5 and doing well. I am hoping this stay won't drag out too much longer. He is still requiring 3 Litres of oxygen continuously, but hopefully he will start weaning soon. His prolapsed stoma is a big concern right now, but nothing surgically can be done until his lungs have improved. It is driving both Noah and I crazy. He's got yeast growing in the site too, so it is a constant source of discomfort for him. Trying to keep the skin breakdown to a minimum is going to be a great challenge in the days to come.

We are so thankful for the huge improvements over the past few days. Hopefully once the weekend is over, we can get a plan in place for discharge.

Thursday, March 12, 2009

A Better Day

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, Noah won...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.

Thank you Mom and Dad for coming to help out with things at home. We are so grateful.

Wednesday, March 11, 2009

PICU Day 7

Day 7 already...has it really been a week?? Feels like a lifetime ago that we left Florida, and yet it seems like just yesterday. I finally have my computer back, so you all have to read my ramblings now instead of Brad's...I will try to update more regularly.

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.

Tuesday, March 10, 2009

Overdue Update

I apologize for the delay in updating.  Kailyn and Josh and I (Brad) are home in Winnipeg.  From +30 C yesterday to - 30 C today was a bit of a shock but no sympathy requested.  We had a good holiday but I am glad to be back here with Nichole and Noah.

Noah is still in PICU on the CPAP. They have been trying to bring down his settings, but he has been needing more and more rather than less and less.  He also has a pneumonia and so the antibiotics are back in action.  Not that it is a priority, but his GJ Tube is also out and his stoma will need some repair at some point as well.  He is not on any feeds so this is not a priority but does require mention.

Please continue to pray for his recovery.  Nichole has still not been home since we left over two weeks ago, and it looks like it will be a little while yet until she will.  Pray for her strength and comfort.

I will update as I have anything new to share.  Thank you to each of you for your thoughts and prayers.


Friday, March 06, 2009

Good Decision, Greater God

As you know, Noah and Nichole made it back to Winnipeg last night. Nichole was quite worried that Noah may not even be well enough to make it home. While in flight, he looked really bad (grey) and was really having a tough time breathing. I guess there are very few parents that think about what they would do if their child passes away in the next couple hours, but this was one of those times. We have become somewhat accustom to that possibility and always need to keep that in mind. This time though was tough because was Nichole was on her own and not in Canada.

Then the pilot on the flight from Minneapolis to Winnipeg came on the speakers saying they may have to re-route to Grand Forks, ND due to bad weather. A real `you`ve got to be kidding` moment. But as you know, by the grace and goodness of God (once again) and the prayers of many, he made it home.

He is in the Pediatric Intensive Care Unit and on CPAP to assist his breathing, but happy, sitting up, and up to his usual tricks. He has RSV which he has had in the past and hopefully can get over again. (I will try to refrain from going into how he was denied the RSV vaccine due to his age of all things a few weeks ago). This is a time for thanks. Thank you to God for his deliverance, and thank you to everyone`s thoughts and prayers for our son.


Back in Winnipeg

Just a quick update that Nichole and Noah are back in Winnipeg and at our second home at the hospital. Thanks so much to Kim for picking them up at the airport and staying with them a bit at the ER. Thank you also to everyone who has been praying that the flight would happen and Noah would arrive in a stable state. Your prayers are much appreciated and still requested.

Although this was a sudden (and sad) ending to Noah and Nichole`s trip, we have no complaints. They were able to spend 9 good days here and considering where we were only a few short weeks ago, we do not take this opportunity for granted.

Still in Florida with Kailyn and Josh,


Thursday, March 05, 2009

Not Well

Noah is not doing well at all right now...we need many, many prayers. I am going to try to fly home this afternoon with him. Brad and the kids will stay behind. Pray that we can make it back home. Pray that they will let us on the flight even if he is not well.


Tuesday, March 03, 2009

Goodbye GKTW

Sorry for the lack of updates, but the past week has been a complete whirlwind. We all had a fantastic time...loved spending the past couple of days with Doris & Ed at Seaworld and Epcot. I can't wait to blog in detail about the entire week and post pictures.

Our last night turned out to be eventful...Brad spent it in the ER...nope, not with Noah...Kailyn ended up with a bad ear infection...was in alot of pain, and the urgent care clinic wouldn't accept Canadian insurance. So they had to sit in the ER for a few hours...got some antibiotics and ear drops and she's good to go again! She still felt pretty rotten today, but hopefully tomorrow she will begin to feel better.

It was very difficult to say goodbye today to GKTW. The place is magical and we already can't wait to go back to visit. (Mom & Dad, we think you would love to volunteer here, by the way!!) But moving to Pop Century (a Disney resort) to extend the trip on our own, definately helped. We had a great time suprising the kids as they had no idea we were staying longer. We are now settled in our new home...definately much more crowded than last week, but hopefully it will be a bit more relaxing.

Noah is still "ok"...definately not great, but holding his own. His asthmatic symptoms are quite out of control and he is needing lots of Ventolin, extra oxygen and some masks here and there when things get really bad. I am not quite sure why he is having such a tough time, and he gets so tired out just from the work of breathing. We will definately need to address this when we get home, but for now, we are praying that we will get another week down here to just enjoy our family time.

Tomorrow we are off to Disney's Hollywood Studios...looking forward to our favorite ride...Tower of Terror!! Hopefully the weather warms up...it's been very chilly the past few days...even for us Canadians!!