Toronto Day 8

In the words of our surgeon "and the plot thickens"...

Based on the results of yesterday's barium study, surgery on Friday will be a bit different than originally planned. The ear tubes will still go in, an upper and lower GI scope will be done and biopsies taken. But Noah's stoma cannot be closed right now as planned. Noah's barium showed that he has a blockage of some sort between his stomach and his duodenum. No barium from Noah's stomach ever made it out of the stomach during the test. Our surgeon isn't quite sure what is going on there. The Coles notes version is that he's thinking perhaps a combination of previous surgeries and this latest prolapse has closed off his pyloris. This could explain his increasing retchiness and his inability to tolerate much time off his NG suction. But since there is no way to know what exactly is happening or what will be required to fix it, the surgery on Friday will be exploratory. Our surgeon will figure out the lay of the land in there, leave the stoma open so as not to obstruct Noah's stomach completely, then wait for biopsy results to decide the best course of action. The barium also showed that Noah's large intestines are mostly on his left side. They take some strange turns...so his anatomy is a bit different, but it shouldn't be affecting his ability to tolerate feeds.

This was all explained in great detail to me today, with elaborate diagrams. Each day Dr Wales has come to see us, sat down with us and spent a great deal of time talking and answering questions about everything that is going on. Have I mentioned how very impressed I am with him and his team? How nice it is to feel that our concerns are validated and our thoughts are important? To feel like they are looking out for our whole family, not just Noah? It is really a welcome change. So, yes, we are glad that we have come and feel confident that if there are answers to be found, they will find them.

Not much happened today. The second tube they put in Noah's jejunum yesterday came out overnight, (no surprise there, as nothing was holding it in), so there are some tests they are unable to do right now. ENT, Genetics, Metabolics and Anesthesia have all been consulted. However, we didn't see any of them today, so hopefully tomorrow we will meet some of them.

Mostly we are in a holding pattern...putting in time...waiting for Friday. Noah has been busy cleaning all the hallway floors with his little toushe (no, you don't want to know how dirty these hospital floors really are!), and showing off his cuteness to everyone. He is already developing a special relationship with the housekeeper who brings in her mop for his daily entertainment (he's always had a thing for them). While I am bored silly, Noah is perfectly content here...basking in the constant attention.

Toronto Day 7

It's hard to believe we have been here a week already. Brad is on his way home this evening and it feels far too quiet.

It was a busy afternoon...a barium study was done. Some barium was put down Noah's NG tube to assess the way his stomach empties. The plan was to follow the barium all the way through Noah's gut. But the barium wasn't emptying out of Noah's stomach at all. So a second tube was put into Noah's stoma and threaded through his jejunum. They then put some barium into his jejunum and followed it through to assess Noah's anatomy. The tube was left in place so that more tests can be done in the next couple of days. This was a miserable experience for Noah with alot of pain and retching. He was absolutely wiped after this one. We did get some visitors though (some old friends from Kitchener) which helped to pass the time away. It was so good to see you Becky, Heidi and Betty. Thank you so much for coming and for bringing goodies!!

Today the team spent a long time deliberating over what to do, but some tentative plans have been made. Noah will go to the OR on Friday to have his stoma completely closed and ear tubes put in. They will also do a scope of his GI tract and take a biopsy of his intestine. The results of the biopsy will dictate the next course of action. If the results show an intestinal disease, then Noah will likely never tolerate feeds and putting him through more surgeries for tubes would be futile. We would be looking at complete TPN dependency. If the results are normal, then we will talk about doing a second surgery, to put in a new G-tube stoma, a second J-tube stoma, and redo Noah's fundoplication. If a second surgery happens, we are unsure whether it would happen here or back home. Although, we are leaning towards having the surgeon here do it. (But, that is jumping way ahead of ourselves right now.)

We have also started weaning Noah's hours off TPN. Back home, because of the risk of clotting, we have not been allowed to decrease the hours. But here the team has a different approach and are huge believers in not having kids hooked up to TPN 24/7, no matter what. So Noah now has 6 hours off the pump during the day, and they are hoping to wean him off to 12 hours, or as far as his blood sugars will allow it. Not sure what our doctors back home will think of this, but oh what freedom that would give us!! And it would significantly cut down on broken lines too.

Toronto Day 6

A very quiet day today. We had plans to go touring a bit more, however, Brad was having back issues, so we haven`t ventured far. We did get a room at Ronald Mcdonald House today, so we moved in. It worked out well, as Brad is leaving tomorrow. The place is nice and we feel quite at home here. The room is very cute and the kids would love it here. They also have free internet, long distance phone calls and laundry, which is very helpful. We recieved free movie passes when we checked in, so we might try to sneak out to a late movie tonight once Noah is asleep at the hospital.

Sounds like things have been busy back home. Joshua got his hair buzzed off, Kailyn got glasses and my mom even had to drag the cat to the vet after he got into a fight. I think they are getting spoiled and have been constantly on the go! We are so thankful to have mom there, keeping things going at home.

I finally got some pictures uploaded, although, I haven`t taken many pictures of the actual hospital, so I will have to do that this week. If you go back through my previous posts, I have added pictures to them. Here is one I have of Noah all hooked up for the night. Note the ancient cribs! We had a good laugh at them. His crib now has a top on it, as our little monkey kept trying to climb out.

Toronto Day 5

We had a really nice day today. Those of you who commented yesterday must have read our minds...we walked to the tower (didn't go up it), then down to the Harbour (amazingly Brad made it that far with his back), then took a boat ride over to the island. We didn't go to the amusement park there, just spent some time wandering and relaxing. It's a beautiful place. Noah was very excited to be out and about. We have to head back to the hospital this evening for the night, but we will have the day tomorrow to do some more touring.

Toronto Day 4

A very quiet day today. Really nothing happened today. Although, talking to the team, they were very happy that we had gotten so much done this week. So now it is the weekend, and everything grinds to a halt. After some pushing today again with the powers that be, we were able to organize passes, as long as I hook Noah up to our pump tonight and take over his care for the night as they don't know our pump. Of course, that is not a problem, so tomorrow we should have the day free to wander the city.

We are going to push Noah's hours off the TPN to 6 hours tomorrow. They are hoping to get him to 12 hours on, 12 hours off TPN. We've never been able to get past 6 hours without Noah dropping his blood sugars, but he was alot smaller back then, so we are going to try again. It would be very nice to gain more freedom.

Test results are slowly trickling back to us...bloodwork looks good...Noah's heart looks good...gallbladder ultrasound shows some sludge (risk of gallstones)...kidney GFR was ok, with the right kidney emptying much slower (there may be a partial obstruction from the stone that we already knew was there)...and ultrasounds of his major vessels look much better than we thought, so it looks like Noah has more options for future central lines, which is very good news.

Next week will bring some intestinal tests and perhaps a biopsy. But we are looking forward to having the weekend off!

Toronto Day 3

Another busy day of tests. Today brough an ECG and a renal GFR (to test kidney function) and we are waiting for another ECHO of Noah' heart to be done yet today. The transplant team is also doing a pre-transplant workup on Noah. No, there is no transplant plans right now. But since many kids in their program end up with bowel and liver transplants, they start the workup in case it is needed in the future.

Good news...after a talk with the team, Noah's ethanol locks will restart today. Our doctor is very on board with them, and managed to get it all sorted out with the powers that be. In fact, the team is very excited about the results we have had. They are hoping that Noah's presence here will allow them to forge ahead and try the locks on other kids. Who knows, perhaps this is our sole purpose for being here! A huge relief for us and it has boosted our confidence in the team here.

There is also lots of discussion regarding what to do with Noah's prolapsed stoma. No final decisions yet, but the surgeon is leaning towards doing the surgery here in the very near future, and he has some ideas of what to do after Noah's abdomen has healed. Today was his first good look at it, and he was surprised to see how big it really is. We can't wait to have that taken care of.

Toronto Day 2

Today was a busy day with lots of bloodwork and almost 3 full hours worth of ultrasound. They ultrasounded every major organ and vessel. Needless to say, we had all had enough by the end of that ordeal.

We met the surgeon (Dr Wales) who heads up the GIFT (intestinal failure) team. We were instantly put at ease. He had definately done his homework on Noah, which was a refreshing change. And so we are quite happy to have Noah under his care. His immediate concern was the bleeding from Noah's stomach that continues to come and go. Despite all the acid blockers he is on, his stomach ph is still quite acidic. And so he was started on IV pentoprozole this morning. Lots more tests to come over the next few days. Our big issue right now is that the hospital is refusing to let us do Noah's ethanol locks. We are very frustrated and this will certainly not go down without a fight. The last thing we need is for Noah to end up with a line infection over this trip, and this is causing us to question whether we have made a good decision in coming here. Please pray that we can come to some sort of agreement.

It's going to be some very long days here. It's so difficult to sit in hospital with Noah when he is busy and feeling well. Thankfully there is a nice playroom right on the ward that is always open with internet access. I think this will be our saving grace! Today was their summer toy drive, and the playroom was turned into a free toystore. Each child got to go on a mini shopping spree. Although Noah was in ultrasound during that time, he ended up with quite the load of toys in his room.

We met a family that I have gotten to know online through a TPN support group. They are also inpatient on the same ward. it's nice to have a support available. But we miss our hospital family terribly and it feels very alien to have strangers care for our son. Although the staff all seems good, it will take me a while to trust them.

For those who have been asking...we are on 6A, in a room with a nice view of the atrium. We also have a room at the Delta Chelsea, just down the block from Sick Kids, and are on the Ronald McDonald House waiting list. The list is not long, so we should have space there soon.

We Made It

After a small glitch with Air Canada first thing in the morning, we are finally here in Toronto. Air Canada did not have Noah's oxygen ready and so we needed to be taken off the plane at the last minute. Very frustrating, but the up side was free breakfast/snacks, a bump up to first class, our oxygen costs reimbursed and only a one hour delay.

But we are admitted now and slowly getting to know this place. Noah has charmed all the staff already, and despite waking at 4am, is still going strong. He's already had an ECHO done this afternoon and the plan is for lots more tests in the next few days. We are tired, but glad to be settling in.

Ready

My last blog entry before we leave...

Everything has come together. My tooth is fixed, thanks to my fantastic dentist, who was able to see me this morning and rebuilt my molar. Brad has got himself a good supply of pain meds after being diagnosed with a herniated disc this morning (an issue that's been bothering him for a while now). And Noah's central line is working beautifully!!

So at 4:30am we will be off...my next entry will be from Toronto.

Crazy

Just to keep life interesting, we spent 5 hours in the ER yesterday. I took the kids to the annual Teddy Bear Picnic put on by our Children's Hospital, and Noah's line broke again while we were there. Thankfully, they got it repaired, and we are once again home with a peripheral IV. We can try using his line this evening...praying it will work.

And now one of my molars has broken...so I'm off for an emergency dental appointment this morning. Hopefully they can do something about it today.

Needless to say, things are a bit crazy around here!