Monday, June 30, 2008

San Diego Zoo

We had a great time at the zoo today. It was difficult to choose which pictures to upload. What a beautiful place! It was hot though, and we've been having to slather on the sunscreen. Despite that, we are all still looking a bit pink. We've been puttting Noah's saline flushes in the cooler along with his antibiotics and giving him cold flushes through his central line during the day. I figured it's a good way to keep him cool. He really doesn't seem to mind the heat.
The gondola ride...
The bus tour...
Brad getting suckered into trying beetle larvae (sour cream and onion flavored and apparently not bad tasting!)...
Back at the hotel. Our little bellboy...

Tomorrows agenda...Legoland!

Sunday, June 29, 2008

Oley Conference

I've gotten behind with the updating, but it's been a very full weekend. The Oley Conference has been a fantastic time and the whole family has enjoyed themselves. There is so much to say about it, and I'm sad to see it come to an end, but I am so glad we have gotten the opportunity to be here.
Friday and Saturday were spent in sessions with topics ranging from advocating, preventing line complications, depression, pain management, transplants and so much more. Lots of fascinating new ideas and we have some questions to go ask back home, and a few new things to hopefully try out. In some ways, it was a bit frustrating, to see all the pumps and new technology that is available, and it seems that we, in Manitoba, are so far behind.
While we were at sessions, Kailyn & Joshua spent an afternoon on a private trolley tour of San Diego and an afternoon at Seaworld. They were thrilled!! Yesterday evening was the silent auction where the kids went a little nuts at the kids auction table and ended up with a bunch of Disney loot. And today was the picnic by the pool with face painting, rock painting (not sure how we will lug those home!), and just socializing. Once again, the kids were spoiled rotten with freebies. Good thing we will have extra room going home after using up all Noah's supplies!

But the best part of the conference was the people we met. Other parents with kids on TPN, and adults who've been doing this for 20 or 30 years. A few of them I have been corresponding with on my internet TPN support group, so it was wonderful to put faces to names. But to just for a few days, feel like the "normal" ones when everyone is walking around with tubes and pumps was such a great experience. A few times Kailyn mentioned how neat it was to see kids like Noah, especially kids her age. To just be around families that "get it", without having to explain yourself...they've been there, done that...that was priceless. We will miss them and are already talking about how we will get to next years conference (it's in Florida, so we wouldn't mind that!)
But it's time to say goodbye and move on...tomorrow we leave the Marriot (loved this hotel...great pool!) and we are headed to the famous San Diego Zoo and then the Holiday Inn at Old Town.

Thursday, June 26, 2008

Happy Birthday Joshua!

Today you are 6, Joshua! Where does the time go??? We love your joy, your crazy sense of humor and your gentle, sensitive spirit.

Yesterday we spent a wonderful day at Disneyland. It really IS the happiest place on earth, I'm convinced of it. We were there before the gates opened, rode a ton of rides, went back to the hotel for a couple of hours in the afternoon to swim and nap, and then spent the evening back at Disney. Disney really bends over backwards to accomodate those with special needs. We were able to get a GAC (guest assistance card) to allow us to use Noah's stroller as a wheelchair, and with this, bypass most of the lines. What a tremendous help this was! Brad said he felt kind of bad when we'd wait a few minutes while everyone else was often waiting an hour or more. But I think we've put in our waiting time many times over and I certainly didn't feel guilty using the system that was put in place for children like Noah.
Noah was entranced with everything, especially the characters (Tigger in particular...must be the bright orange)! Many of them paid special attention to him, even during the parade, which touched my heart!

This morning, we celebrated Joshua's birthday with a special character brunch at Goofy's Kitchen in the Disneyland Hotel. The kids had a blast and were able to interact with a bunch of characters. They especially enjoyed dancing and banging pots/pans with Goofy...oh, yes, and eating dirt cake with worms for breakfast!
Then we headed to Downtown Disney to Build A Bear Workshop. The kids have been saving their money, so they each were able to make a bear.
Then it was off to San Diego. We spent a bit of time at the ocean and the tidal pools in La Jolla on our way. Noah was thrilled with the sand!! What a huge mess trying to keep it out of his tubes and pumps!
We are now settled in the Marriot, and looking forward to the conference tomorrow.

Wednesday, June 25, 2008

We Made it!!

Yesterday went more smoothly than I ever thought possible, and we are now at the HoJo with a beautiful view of Disneyland from our balcony. The airport security, oxygen on the plane, shuttles and finding our rental car all went so well. We had absolutely no issues at all. We found with security that the less information we offered, the easier the process. We arrived at our hotel at 9:30pm California time, just in time to watch the fireworks.

This morning, with the 2 hour time difference, the kids were up at 4:30am!! Good thing Disney opens at 8! Off to Disneyland...

Monday, June 23, 2008

And We're Off...

Well, somehow we managed to pack everything up...hopefully! We have all Noah's essentials, so anything else we can do without! We made it to Fargo this evening and are spending the night at the Super 8...kind of a dive, actually (I don't recommend it!), but we are just here to sleep, so it will do.

Sunday, June 22, 2008

Tomorrow's The Big Day!!

It's been a crazy week of packing, phone calls, tying up loose ends, Joshua's birthday party, church picnic and...oh yes...and having Noah's GJ tube reinserted on Thursday (talk about giving me another mini stroke!). But tomorrow is the big day...we are actually going to do this. Once the kids get home from school, we leave for some southern rays! We will be driving to Fargo tomorrow evening, spend the night, and then drive to Minneapolis the next morning. Our flight leaves from Minneapolis on Tuesday at 5:15pm. Still lots of last minute packing and errands to do tomorrow yet, and then we are off!

I'm pretty stressed about getting through airport security with Noah's oxygen, 2 pumps, suction, loads of fluids, meds, syringes, and much more. We have our doctor's letters and the airline has been alerted, so I think we are as prepared as we can be, but it may still be quite an ordeal.

Please continue your prayers as we embark on this huge undertaking!! I don't think I quite realized how huge it would be until I actually started packing everything. But we all love to travel, so I know once we are there, it will be a wonderful break from the usual.

We will try to update as we are able!

Wednesday, June 18, 2008


Noah was discharged today and doing well! He is on a 3 month course of IV Cloxacillin every 6 hours. ID decided they weren't going to take any chances, with all the pus that was seen when his line was changed. There is a chance that this new line was infected during the change, and there is question as to whether this staph infection came from this absess, or another source that was never uncovered. So to protect his very precious new line, this is what we must do. It means alot more work, and alot more supplies to drag around, but perhaps a long course of antibiotics will keep Noah out of hospital for a good long stretch!

So it looks like our trip is actually a go! Thanks to Doris, our wonderful CH5 charge nurse/homecare nurse, who managed to figure out a way for us to take along enough supply of IV antibiotics to make this trip happen. And I think we've managed to sort out most other issues too. Respirology is insistant that Noah will require oxygen on the flight because of the change in pressure, so we are renting a portable oxygen concentrator for the trip. He will run 2 litres of oxygen during the flights, and then we can also use the portable concentrator for night and naps during our trip. We have doctors letters for all his pumps, fluids and oxygen, but I'm still very nervous about getting through airport security. They certainly don't make it easy to travel!

More good news...we did a sleep study on Noah during this stay and he is much improved from his last study a year ago. So we are able to decrease his nighttime oxygen from 1Litre to 0.5Litres! A big step forward!!

Saturday, June 14, 2008

PICU and Back Again

After a very long day of waiting, Noah's surgery finally did happen. 10am, turned into noon, which turned into 3pm, which turned into 4...finally at 5pm they took him in and by 7pm, he was settled in PICU. Unfortunately, I sat in the waiting room until almost 8:30pm (could have sat there all night!!), as no one bothered to tell me what was going on...the last straw after a rotten week. But, despite all that, Noah did very well. He was already yanking out all his monitor cords this morning, and had all the nurses laughing at their "critically ill ICU patient". So he was moved back to the ward this afternoon, and was very happy to be in his "home". The surgeon did have problems getting the line in. He tried the right subclavian and was unsuccessful, but did end up getting a line into his internal jugular. The old line had pus around it when they removed it, so it's good that it is gone. The new one is a tiny one though...a 4 French!! This concerns me...easier to break...easier to clot. It just looks so fragile! Praying it will last us a while.

Hopefully once we get through the weekend, we will have a better plan as to when we can get Noah home. We still need to sort out some feeding issues, figure out how long he requires IV antibiotics, and do Noah's sleep study. But I am hesitantly hopeful that we will get out of here sometime next week. It is driving the kids crazy not knowing if we are going or not, so hopefully we will have a clear answer soon.

Friday, June 13, 2008

All I Can Do Is Trust...

Noah was admitted Monday morning with low grade fever and line redness. His peripheral and line cultures both came back growing staph again (the same bug we stopped antibiotics for 2 weeks ago). By Tuesday, he was already up and about, scooting down the hallways. But because we can't seem to erradicate this bug, it has been worrisome. An ECHO and a bone scan were both done and both looked clear. However, staph is a difficult bug to get rid of, and so it was decided yesterday that Noah's best chance is to get rid of this line. This morning at 10am he will go to the OR to remove the infected line and reinsert a new one.

With 12 days to go before we plan to leave, we are all pretty stressed. All I can do is trust... trust that this will all somehow work itself out. I worry most about Kailyn & Joshua as it just isn't fair to disappoint them. We are all pretty tired of this life of chaos and it just doesn't get any easier. We are desperately working on a solution to permanently get rid of Noah's line, however, that could be a long process yet. All I can do is trust...

Sunday, June 08, 2008

Got Enough Gray!!

Seems Noah wants to add more gray hairs...

With only 2 weeks to go before we leave, there is something going on with his line. The area around it is red, warm, painful and hard...classic signs of a clot or infection. He is certainly not himself either...sleeping alot and very inactive. No fever, which is a good sign, but it looks as if I will have to take him in tomorrow morning. Already planning for a hospital admission, but praying it will be a quick turnaround.

Wednesday, June 04, 2008

Big Plans...If Noah Behaves!!

Thought it was time to post about our big plans in the works...

The Oley Foundation is holding their annual TPN/Tubefeeding conference at the end of June, and this year it is in beautiful San Diego. There will be speakers (doctors/RNs) from all over the USA there, and a fantastic opportunity to hopefully gain some new insight and meet others in similar situations. Everything is booked and after much searching, I finally found a travel health insurance plan that I feel confident will cover Noah. I'm still working on all the travel aspects of transporting Noah's pumps/supplies, mapping out hospitals, and writing out a thorough medical history. But really, it's all dependant on Noah to behave and STAY HEALTHY!! Our plan is to spend some extra time in San Diego after the conference to take in the Zoo, ocean and Seaworld, and then spend a few days in Los Angeles at Disneyland. It's a big undertaking, as our last big trip we had my parents help and no central line to worry about. But I think it will be worth it. The kids are beyond excited and counting down the days, however we are always careful to talk about going "if Noah is not sick". I know it will be an enormous disappointment to them if we can't go. And so we need all the prayers we can muster up to keep our boy healthy!!

And our exciting news related to our trip is that our family has been selected to recieve the Bruce Groeber Memorial Scholarship through the Oley Foundation of $1000 to help cover the cost of our plane tickets to the conference. This is such a huge blessing and we were thrilled to recieve this news! We thank God for this very generous donation!

Noah is still doing well with no major blips to blog about...always a good thing!