Wings

It is with great sadness and a heavy heart that I write this blog.

Noah earned his wings today. Just after 2pm this afternoon he went to be with Jesus.

No more tubes...no more pain...he is whole.

PICU Day 2

Things are rough here...we are living hour to hour...things are still critical. The night was very rocky with worsening blood gases. Noah is proving to be very difficult to ventilate. His asthmatic issues really complicate things, causing these long, forced expirations, that do battle with the breathes the ventilator is trying to give him. Ketamine has been added to his ever growing list of drugs to help with the asthmatic issues, as well as lots of ventolin. Many ventilator changes to try and find a happy place for Noah, but we still don't seem to be there yet. Gases are still bad, but not worsening this evening. Noah's blood pressure has begun to drop...he received more albumin and a dopamine infusion was started. He is still spiking crazy high fevers and his kidneys are not functioning well. Nothing has grown so far on any of the cultures and H1N1 results won't be back until tomorrow. So really, not definitive diagnoses yet other than ARDS (acute respiratory distress syndrome).

Line access, as always, has been a major issue again, as Noah is needing more and more meds. Since our central line is only a single lumen and Noah needs that for his TPN, more access was quickly needed. The docs managed to get a double lumen PICC line in his femoral vein, but because of so much scarring, were unable to thread it much. Hopefully it will at least buy us some time.

Praying once again for another miracle.

(Update: 2:00 am July 29 ... Nichole called me (Brad) in early this morning because Noah was going downhill very fast. The Doctors were not sure if he would make it through the night. Noah is currently on medication to sustain his blood pressure and effective heart beat, he is also on the oscillating ventilator and kidneys have shut down. More updates to come as there are any.)

(Update: 12:00 pm July 29 ... This morning at around 9:00 Noah's blood pressure dropped to a critical low and he went into Cardiac Arrest. There was very little the doctors could do except some last effort medications. After almost 2 minutes, Noah (and God) had his own plan and returned to spontaneous circulation. He is still fighting and will have a tough day ahead. Thank you for all the prayers... God is real, he is listening, and answering...)

PICU Day 1

Did I really write that title???...thought I was done counting days for a while.

It's been one of those days today.

We got to the ER around 9:30 this morning, where Noah was taken right into the resus room. His breathing continued to get worse throughout the morning with lots of coughing up blood, his oxygen needs kept climbing, and his blood gases continued to go downhill. Around noon he was moved to PICU to try some BIPAP, but he did not tolerate it well, and he was immediately intubated. He is now on the ventilator, quite sedated and his lungs are getting the rest they need. After watching Noah work so hard all morning, he deserves a good rest. His blood gases have not improved much, but hopefully with more fiddling with the vent settings and some doses of bicarb, this will turn around. He is recieving blood this evening to combat his dropping hemoglobin, lasix to help with the fluid in his lungs, along with some albumin to help maintain his blood pressure.

What exactly is going on is still unclear. His chest xray looks particularly bad, with definate pulmonary edema and some question as to whether there is fungus growing in his lungs. He is also presenting with some classic signs of the H1N1 flu, so he has been cultured from everywhere for everything. We should have some results back tomorrow. For now, no chances are being taken and he is under strict isolation. ID has also started him on Tamiflu (an antiviral flu medication) just in case, along with antibiotics to combat any bacterial infection. They are holding off on the antifungal for now and we will wait to see what grows in his lung secretions. Whatever is going on has made him very seriously ill and he's got me pretty worried. Trusting in our heavenly Father tonight to carry us all through these rough days.

Back Again

I was hoping to sit down today and post some pictures...we had a wonderful time. But that will have to wait. Seems that our hospital reprive is over. After a sleepless night, we are off to the ER with fevers and increased work of breathing.

Repacking!

I have spent the day racing around, trying to repack clothes, supplies, food, and somehow get somewhat organized with all of Noah's medical stuff. So much has changed since we were home last time. Hopefully we will get all our supplies and prescriptions by this evening. Right now I am thinking that I am a bit crazy to attempt to get away already with so much waiting to be done at home. But it can all wait some more. And it will be worth it, right???

In the midst of this, today I have experienced the downside of having a public blog for all to see. I got an email today from someone who has concerns that others are seeing what I have written (particularly of our travel issues) as magnifying our problems. Since I tend to be too sensitive and cannot brush these things off very easily, I feel the need to address it here. Just so it is clear, this is a public blog of our family's very personal thoughts, feelings and experiences. I am disappointed that others feel the need to judge what I write or to compare it to others who are suffering. Sometimes I need to vent, and this is the place for me to do it. I am not expecting everyone to agree with everything I post. I am not comparing our travels or our medical system to others in third world countries and I am well aware of those issues. I know that we are very fortunate to have all that we have and to have access to these opportunities for Noah. There are so many others of you who have much larger burdens to bear, which was very apparent at Sick Kids.

However, we battle everyday for Noah...we battle the medical system...we battle other systems that create obstacles for special needs...these can get very frustrating and overwhelming. Even though some of these battles may seem very minor to others, and perhaps rightly so, this is our world and for us at the time, they are huge. I do not expect others to understand, just as I cannot begin to understand what others are going through. We all have our own battles to face. But, I do expect this to be a place where I can freely express what is going on in our family.

Very much looking forward to spending this evening with friends that I have missed terribly. Tomorrow I am off to my parents cabin with Noah, and the kids are each spending a few days out at Turtle Mountain Bible Camp. Brad has to stay back to catch up on work. I will be away from the world of computers and blogger for a while and hoping for some relaxation. So no news on here will be good news!

Home Home

We are home home!!

We are so glad to be home...feels strange, but good. As always, it's a bit of an adjustment, and quite hectic, trying to get organized again with all the medical changes and there is so much to catch up on. And with the kids off to camp next week, my is plan to go out to my parent's cabin close to the camp...the next couple of days will be very busy! But I'm looking forward to getting out to the cabin and enjoying some true summer.

The trip home was another ridiculous experience with Air Canada. How is it that they can make things so miserable?? When we tried to check in for our flight, a manager was called over who informed us that, once again, our oxygen was not on the flight. That was the last straw for me...I was very upset...I just wanted to get home so desperately! That they could screw this up twice, after we are paying extra for this "service" and have jumped through all their medical desk hoops and paperwork nightmares...unacceptable. First I was told that they wouldn't get it until the next day...to which I explained very nicely that this was just not possible. We NEEDED to get to the hospital. The manager contacted the higher ups, explained our situation, and then magically someone tracked down the oxygen and we were on the next flight. The manager did what he could...put us in the Maple Leaf Lounge and bumped us up to first class. But definately not worth the hassle and worry. Air Canada, you have managed to make more customers unhappy...yes, you will be hearing from us. Kim, so sorry we missed you at the airport...wish we had made it in time for you all to welcome us home!

By evening we were settled into our hospital...it was nice to be back among "family". Yesterday was a day of getting everything organized and working out issues to transition home. We also did an ultrasound on Noah's wound, since it is still draining, but there is just a very tiny pocket of fluid, so it should continue to drain out on it's own and heal up. We are still working on getting our IV pantoprazole for home use...Manitoba Health is making it very difficult. For now we have a couple of weeks of the med from the hospital, and then we may have to jump through some hoops to get more. But hopefully things will be worked out by the time our supply runs out. Today we had a bit of a scare when our home TPN ended up at Winkler hospital instead of Winnipeg. But they sent the truck back for it, and we finally got our delivery.

Thank you so much to the house fairies for cleaning our house and the beautiful flowers...our freezer is also full of food...what a nice treat to come home to!

Home ... kind of

I am sure that Nichole will do a more formal post soon, but she has no internet access at the hospital here in Winnipeg. That's right, we are home from Toronto and although Noah and Nichole went straight from the airport to the hospital, it is good to be home.

Nichole and Noah were on a different flight than Kailyn, Joshua, and I (Brad). Westjet was great to cover our flights, but Noah needed Oxygen and so went with Air Canada (for the last time). AC once again were not prepared for Noah's care and they were bumped from their return flight .... again.

So after a long day and couple hic ups, we are home. They plan to be out in a couple days and finally be freed from hospital for a while.

Thank you to the "house fairies" for a clean organized house to come home to.

Toronto Day 42

My last Toronto post...finally...

A long day, just killing time until we leave tomorrow. Everything is a go...praying it all goes smoothly tomorrow. I am so anxious to be back home. It's been a long haul, but worth it. Noah is going home minus his NG tube, suction and prolapsed stoma. He has gained a new G tube, J tube, rearranged intestines, a stomach that actually empties, and we have some feeds with fat trickling in those intestines. Alot of good progress, and although we are still very far from being able to say goodbye to TPN, it's a start. We are leaving with much more hope.

A better day for Noah today...the increase in Domperidone seems to be helping the retching and he was more himself today. We decided not to rock the boat and make any changes to his feed today. We will wait until we are settled back in Winnipeg again.

A volunteer hairdresser came by today and gave Noah a haircut...

A before picture from yesterday...

And after...

I couldn't believe how still he sat for her! He looks so different...Ok, I do miss his crazy surfer hair and his curls in the back, although I do think he looks pretty cute...

Toronto Day 41

Well, we really wanted to get to Canada's Wonderland, but by the time we got Noah out on his pass, we figured it was probably not worth the hour long drive to get there. We had gotten free tickets for a second day at Ontario Place (since their guaranteed weather was in effect yesterday), so we decided to kill a few hours there again. It was like night and day compared to yesterday. The place was JAM PACKED and it felt like we were in a cattle herd...ok, do you Torontonians not understand the concept of personal space???

The kids mostly just played at the water park since the lines were unbearably long (even to get into the waterpark we had to wait in line as it was at maximum capacity!). We did do one ride (the ride that the kids did about 30 times in a row yesterday) and we waited in line for well over an hour! And then a huge family had to nerve to cut into this line...what a sad lesson those parents were teaching their children. We did complain...that didn't seem to matter...but, hey, what goes around comes around, right?

Certainly not as enjoyable as yesterday, but it kept the kids entertained, and Noah was happy as usual just being out and about.

Toronto Day 40

A very nice day today...we were able to hook Noah up to our feeding pump, which gave us a full 7 hour pass today. So we spent our pass at Ontario Place. It was the perfect day to go...it poured all morning, but cleared up by early afternoon, when we got there. So the place was DEAD! We have been using Noah's World Passport from his wish trip, which has allowed us to get to all these places here in Toronto (this was given to us at Give Kids the World, and gives our family free admission to a huge list of amusement parks all over the world for one year).

Noah loved meeting Elmo...

The Treehouse show (Toopy & Bino) was a huge hit with him as well...
The kids loved all the rides, especially with no waiting in lines...

And Noah loved watching us on the rides...
The waterpark...
A fun place to hang out...we were so glad we went. Tomorrow we are hoping to get another long pass and brave Canada's Wonderland for a few hours.

Toronto Day 39

An ok day...plans are in place for discharge on Tuesday and we are all very antsy to get out of here. Our flight is booked, and hopefully the oxygen is all arranged. I had a few people working on it today at the hospital, so it should all be a go. Our flights leave close to the same time, so we will be able to travel to the airport together. We are flying home on different airlines, which is too bad, but at least we are going home! Well, ok, we are technically not going home...we are going into hospital back in Winnipeg. That should only be for a couple of days though, to get everything arranged for home. At this point, though, that will be so much better than here.

The team tried to increase Noah's feeds to 8mL today...I was not happy. Yes, Noah's poops look "glorious" (in Dr Wales words...yep, we get quite excited about nice looking poops around here), but Noah has not been himself these past couple of days. The retching has increased tremendously and he has not felt like doing much...no bum scooting down the hallways. This is Noah saying "slow down!" And there is no rush to get to full feeds (which I found out today is at least 50mLs!!). So we went back down to 6mLs and are increasing his Domperidone to try and get the retching under control. We also increased the glucose in the TPN again as there is still no weight gain, so we had to give up another hour of freedom. Since Noah is connected 20 hrs to the feeding pump anyways, being connected an extra hour to the TPN pump really doesn't make much difference.

We got out for a couple of hours this afternoon and walked to the Hockey Hall of Fame. (No, not my first choice of activities, but we got some free tickets and thought it could pass some time). It didn't hold the kids interest for long, but they did enjoy touching the Stanley cup.

Toronto Day 38

Medically, not a whole lot new. We didn't move up the feeds today...just giving Noah time to settle with the 5mLs. He just wasn't quite himself today. His wound infection is still draining some pus, although it's improving, but we won't be stopping the antibiotics yet. Plans for discharge are still in the works...just dealing with Air Canada's medical desk again...uggg...always such a pleasure. I really wish West Jet supplied oxygen!!

Some race car drivers from Laps for Kids came to visit the kids today which was a neat experience. The first group in the morning...

Then there was a second group in the afternoon. Noah was happy to get out of his room for a while, but he started screaming when one of the drivers turned on the car and reved up the engine.


Some playroom pictures with Joshua in his usual position...

We got out for a couple of hours this afternoon and hung out in the park...


Then we finished off the day with a visit to see Tails again (the usual Thursday evening play).

Toronto Day 37

We were able to get Noah out on a pass this afternoon and so we decided to give the tower another try. There was only a 30 minute wait this time, (and I think we actually waited much less than that), so we went up.

The kids got a huge kick out of the glass floor. Noah loved crawling around it too!

Noah, sulking, after being scolded for pulling hair... Medically an ok day...alot of retching this morning and evening, so the feeds are staying at 5mL and we are adding Domperidone to the mix of meds. This should help his stomach empty faster. So now we are giving one drug to increase upper GI motility, and another drug (the Loparamide) to decrease lower GI motility. Interesting combination...but, whatever works! We also got Noah back down to the gym for more therapy today. He definately tired quickly, but he did well with some walking and standing practice.

Plans for home are in the works, hopefully for early next week!

Toronto Day 36

A good day today with some good progress made. We moved up to 5ml on the feeds tonight, so hopefully we won't have to increase the TPN again. We also discussed getting home next week. Sounds like we should be able to make that happen, although Dr Wales would love for us to stay and work on feeds here. He did say that if we stayed he thought we could make quicker and perhaps more progress here. Plus, in his own words, for his own "academic purposes", he'd love for us to stay. I think if it were up to him, we would never leave! Really, we have just had enough...we have made good progress, sorted out some issues...it has definately been worth it, but we feel like we can do the rest from a distance. So the plan will be to continue to work with the team via telemedicine. We just want to get home and have some summer to enjoy out of hospital.

We were able to get Noah out on a pass this afternoon to go to the Royal Ontario Museum. It was fun for a couple of hours, although we all have to say that we enjoy our Manitoba Museum more. A nice break though and Noah was thrilled to be out.