St Malo Camping

We attempted our first camping trip in 2 years at St Malo this past weekend with our church small group. A great time was had by everyone and Noah was actually quite easy to entertain for the most part. We had the use of Brad's parents trailer (AC, fridge, microwave, bed...my kind of camping!!) so that definately made things easier. The beach was a bit tricky, as we expected with the sand, but I didn't expect the water to be an issue. This summer Noah seems to have gotten over his fear of water, and just kept heading for the lake. He was quite unhappy when I took him away from the water. But lake water and central lines is just far too risky. He did manage to bum scoot his way in for a few minutes and he was quite proud of himself!

Noah developed quite a fascination with bikes, which kept him entertained for a while at the beach.

The bike gang...
Had to add these, Kim. Never too young for the good stuff...

Today, Noah seems out of sorts and he's got this cough that he just hasn't been able to shake. Something isn't quite right...hoping the antibiotics he's on will keep him home. He has bloodwork scheduled for Thursday, so we will see if anything new is brewing.

Barium Study

The barium study yesterday went well...nothing abnormal found. Guess I should be glad, but I was hoping to find something...something to explain some of Noah's gut issues...something that had a solution. But, alas, Noah remains a mystery! But we did discover that his tube had somehow migrated out of place and most of it was sitting in his stomach. That would explain the huge amount of drainage over the weekend. So we had to take the GJ out and reinsert it. It was a difficult insertion this time, but all is now in place and working well.

No more tube!!

Thursday afternoon we managed to get in with radiology and have Noah's new 16Fr GJ tube inserted. The insertion went smoothly and with his new tube there are 2 ports. So we are able to vent from the G port and feed into the J port. This means no more NG tube and his face is finally tape free! His face looks a little wonky though, with his weird tan lines but it must feel so much better for him to be rid of that thing. Hard to believe that we lived with that tube for over 4 months! We were concerned with how well the new port would drain, but so far so good. It was a rough day for him though, and he came home and pretty much crashed until morning.

The interesting thing is that something strange showed up on the xray pictures when inserting the tube. His intestines weren't showing the normal curves that they should be (and that we think they have in the past). Not sure what it may be...perhaps his intestine intermittently twists. But he is now scheduled for a barium study Monday morning to check it out. It would actually be nice to actually find a problem. Perhaps that would give us some answers as to why things don't work the way they should.

Now, Noah is battling a cold, but hopefully with the help of the ventolin, he can fight this off quickly. His drainage has increased alot, so we need to keep a pretty close eye on his fluid balance right now. He's also got a nasty yeast infection around his stoma. Between the itchyness of his stoma and his cold, he's feel pretty miserable.

And So it Goes...

The laundry's been tackled, the suitcases finally unpacked and we are settling back into regular life again (as regular as summer life can be). This week has been a busy week of appointments and reordering supplies. If it wasn't for the bit of color we all managed to get, I'd think we'd never left! The Manitoba TPN program has switched to a company in Calgary called Calea, who will now provide all our TPN and supplies. I have talked extensively on the phone with them and we will recieve our first shipment from them next week, so hopefully the transition goes smoothly for us. I also brought up a couple of new ideas from the Oley Conference at TPN clinic today. Didn't get a great response, but I'll continue to ask the questions, and hopefully with some more research into it perhaps someone will be willing to try something new.

Now, here comes the drama...because of course, we can't seem to go long without it! Apparently Noah is now capable of pulling himself up to a standing position in his crib and actually flip himself out! Yes, after putting him to bed this evening, I heard a thump...then screaming. Ran upstairs, and Noah is sitting on the floor beside his crib. He seems no worse for wear, but the worst part is that his fall pulled his GJ tube out. The good news is that we were hoping to change his tube in the next week or two to a size 16Fr GJ tube with a gastric port for drainage (and get rid of his NG tube in his nose). So I will run fluids tonight through his central line and call in the morning to see when radiology can put in his new tube. Not great for his weight, especially since he managed to lose weight on our trip (down to 15lbs 14oz).

Never a dull moment around here...

Canadian Soil!

We are home! We drove from Minneapolis today and arrived home this evening. As much as we loved California, we are glad to be back on Canadian soil again. Now to the daunting task of unpacking...

Back On Solid Ground

We arrived in Minneapolis this evening after a long day of traveling. Everything went very smoothly with security and Noah slept most of the flight again. I definately breathed a sigh of relief tonight, to be one huge step closer to home, as I know some of you are too! It was hard to say goodbye to California though. We are spending the night here and then we will drive home tomorrow.

Our final goodbye to our rental van before heading to the airport!

~Goodbye California!~

Disneyland

We spent the past 2 days at Disney and had a much better time than our last day there! Noah's line is working well and everyone had a great time.


And to make our trip even more magical, this morning we were "dreamed"! In celebration of Disney's 50th anniversary, it is the "year of a million dreams". Each day, prizes are given away in the park and we were lucky enough to be given Dream Fastpasses. This gave us fastpasses (a pass to bypass the regular line) for all the big rides at both parks for the day (these are the rides that Noah is too small for, so we were unable to use his special pass). The kids were thrilled, and we were able to do all their favorites one last time. (The only way we ever could have in the VERY busy summer season!) A great way to end off our trip.

It's been a loooong day...

The Tower of Terror...one of the favorites!!

We love Disneyland!!

Back in Action!

It was a long night after 8 hours spent in the ER, but we are back at the hotel with a fixed central line! The hospitals down here use Bard lines, not Cook lines like Noah has, and only a 4.2 french Bard repair kit (rather than the 4 french that Noah has) could be found. So no one was holding out much hope that it could be repaired, and the plan was to admit him and place a new catheter in the morning over a guidewire. However, a trauma surgeon was there, who figured he'd try the Bard 4.2 kit and managed to repair our line! So by just after 3 am we were back at the hotel with a working line! Noah did end up getting a peripheral IV to give his IV antibiotics while waiting for the line repair, and blood drawn to make sure his white blood count was ok and showing no signs of infection. All is well and Noah had all the nurses wrapped around his little finger with his cuteness!

It was quite an adventure! I really didn't know whether to laugh or cry, it was just so unbelievable that it had actually happened, especially with such a new line. But, then, this is Noah we are talking about! A very frustrating way to spend a night of vacation, but we are SO thankful it was quickly repaired and Noah didn't get admitted. We just pray this line has no further issues at least until we get home. Our insurance company so far has been great, so hopefully once the hospital bills come to them, there will be no issues.

Today will be a rest day spent at the pool and checking out some of the shops around here. We are all pretty drained after yesterday. Tomorrow we will attempt Disneyland once again!

Oh...the valet parking at the ER here...wow, I could get used to that!!!

Adventures in California alright!!

Today we headed off to California Adventure park (Disneyland's Sister Park right beside). Even Kailyn and Joshua ventured on to the Tower of Terror and loved it.

Then in the afternoon, the real adventure started... Noah broke his central line completely off.

We are so grateful for the gift of this trip and could only shake our heads as such a strange yet serious complication showed up now. This line goes to (comes from) Noah's central circulation and was completely open. We caught it right away, and clamped it / taped it / secured it and formulated a plan. After a quick pit stop at the hotel for his records, medications, and a quick Google mapping, it was off to UCLA Medical center where Noah and Nichole are right now. UCLA is not the closest hospital, but does have one of the best pediatric centers in the world. We still have not received any plan for treatment / repair or even started the insurance roller coaster ride, but as always will trust in God's goodness and take it one step at a time. Kailyn, Josh, and I even returned to Disney to get the most out of our tickets.

Please pray for a speedy solution, Noah's health, everyone else's mental health, and a salvaging of the remaining vacation. Perhaps this trip to this hospital will give us some insight or information that will be very helpful in Noah's future, only God knows the reason. It is a good reminder in the lessons of patience, relinquishing control, and counting blessings.

Brad

July 4th

Today we said goodbye to San Diego and took our time driving back to Los Angeles. We are here at the Hampton Inn, where we had a great view of the Disney 4th of July fireworks display from our window. The hotel also had a movie evening for the kids with free pizza, popcorn, cookies etc.

Looking forward to Disney's California Adventure park tomorrow...

Seaworld

Seaworld day...

HOT, HOT, HOT!!!

We bought Noah a light sword during the night show. It was a HUGE hit!

Old Town

Today we spent touring the older part of San Diego. Our hotel was right down the street from Old Town Historic Park as well as the Sheriff's Museum. A much more relaxing pace than the theme parks!The jail cell at the sheriff's museum. The kids thought the food in the cell looked pretty fun!

Hope we don't see this pose again anytime soon!

In the courthouse...doesn't someone look guilty!

The old schoolhouse

Joshua trying out his carpet beating skillsIce cream!

Our hotel in Old Town

Then it was off to the beach, although we've found that Noah and the ocean just don't mix! He is not content to just sit in the stroller. All he wants to do is bum scoot through the sand...trying to keep the sand out of his line connections and pumps is an absolute nightmare! We tried wrapping his connections in a rubber glove, which worked fairly well for the most part. I'm sure ID would love seeing Noah and his lines covered in sand! So the beach hasn't been quite as relaxing as I had imagined...but hey, he's having fun!

The other issue we've had this trip is trying to eat out. Trying to entertain a child who does not eat in a restaurant has proven to be a difficult task, so we've had to eat alot of fast food or takeout. We have found some excellent restaurants that were a hit though. Cafe Coyote (a wonderful mexican restaurant in Old Town) had men serenading mexican music throughout the meal (of course, Noah loved the guitars!!) and Corvette Diner in San Diego. A zany, 50's style diner where the waitresses sing/dance, throw around straws and bazooka bubble gum and magicians come entertain at your table (definately not the kind of place you go for a quiet meal out!).