Details

The details are all starting to fall into place for tuesday. We have now been told to expect this admission to be closer to the month, that was originally talked about. Our flights and oxygen are booked, leaving tuesday at 6:30am, to get us to Sick Kids by noon. Brad will stay a week, and then come home. Noah and I have return tickets booked for 3 weeks from tuesday (the 23rd), with the option to change the date if we need to. But I'm being optimistic, praying that it won't be longer than that!

Noah will be inpatient the whole time we are there. We are hoping that on the weekends he will have passes and we will be able to get out a bit. That should help break up the stay a bit.

Thank you to those who have generously offered help to us in Toronto with suggestions of accomodations. Please know it is all appreciated. We are still working out those details. I am feeling completely overwhelmed, and I will be glad to just get there and settle in.

Toronto Date

We recieved word about a date for Toronto..

They will have a bed for Noah on June 2nd...less than a week from now! We don't have much for details yet, but it sounds like the plan will be for him to be inpatient and hopefully no longer than a week for now. We should hear more details within the next day or two. Brad is planning to come too, so we need to work on finding flights and a place to stay that is within walking distance of the hospital (Ronald Mcdonald House has a long waiting list, so it is likely out). My mom will come to stay with the kids.

Lots to be done in the next week...quite overwhelming, but I am glad it is happening quickly and praying that some good will come out of it.

Hearing Tests

Noah had some follow up hearing tests today. The results were a bit surprising...Noah's right ear has always had a moderate hearing loss...nothing changed there. They didn't even bother testing it much. But his left ear, which has always been his good one, is now showing the same moderate hearing loss. This is concerning, as he has always been able to compensate well with his good ear. But now, he is unable to do that, and is likely not hearing most of our normal conversations. There is fluid in his ears, which is part of the problem (a commen issue in kids with cleft palates). So he definately needs those ear tubes to help drain the fluid. This will be done whenever he goes for surgery to have his stoma repaired.

But even tubes won't be enough...he will most likely need hearing aids as well. Today, with the bone conduction test (which bypasses the fluid in the ear), his hearing was still not close to a normal range. We will do further hearing testing after the tubes are placed, and then decide what type of hearing aids he will need. All of this does help explain Noah's lack of speech and sound development.

Still waiting to hear of a date for Toronto. We don't have many details yet, and are unsure whether Noah will be inpatient the whole time, or whether he will be outpatient, and we will need to find somewhere to stay. Thank you to those of you in Toronto who have offered support...I don't feel quite so alone.

Toronto

A long day today...

This morning was a very long appointment at pre anesthesia clinic. After a lengthy discussion regarding Noah's history, the surgical risks and the need for a PICU bed after surgery, we were given the go ahead for anesthetic in the near future.

Then this afternoon at TPN clinic, our surgeon made the decision that we shouldn't be doing any surgery until we have another opinion from Toronto Sick Kids. I was told that Toronto was "now or never"...either go for another opinion if we were really serious about this, or continue palliative measures here. We've been talking about Toronto for the past couple of months. We've said no to going a couple of times, as it just wasn't good timing for us. We wanted to wait until fall...really for my own selfish reasons...

I just really wanted a break...

is it really too much to ask for???

We could be there up to a month, and Manitoba Health will only pay for flights for Noah and one parent (which will be me)...no other expenses. So, I haven't been jumping at the chance to be away from Brad & the kids, stuck in a strange hospital for who knows how long.

But...as always, if this is what needs to be done for Noah, then I will pick myself up by my bootstraps and we will forge ahead. I know that this needs to be done to make sure that we have given Noah every chance possible...it needs to be done. I just wasn't quite ready for it yet...so today took me a bit by surprise. I did give the ok to get the ball rolling and now we are just waiting on a date.

So no surgery in the near future...a trip to Toronto Sick Kids instead.

A Working Line

Just a quick update...

Noah's central line is working great! We are enjoying a nice quiet weekend AT HOME!

Deja Vu

We spent another day in the ER today. Noah's line broke again this morning...the same place it broke on Tuesday. The IV nurse did a new repair on it, and said that not near enough glue was used on the last repair. Hopefully this time will work!! So, same as last time...a repaired line, a peripheral IV to run fluids overnight, and lots of prayers that tomorrow at lunch, after the glue has dried, we will have a working line.

The good thing is that we saw our surgeon in the ER, and she took a look at Noah's prolapsed stoma and decided it was time to find some OR time to repair it. So next week we have an appointment with anesthesia to get their blessing. Hopefully we will have a surgery date soon after that.

Fixed!!

We are home, with a fixed line! Thank you all for your prayers...things could not have gone more smoothly. Noah got his line caught around the kitchen island yesterday, pulled too hard and suddenly his line was in two pieces. We had a fantastic doctor in the ER, (and thankfully we had a repair kit at home that I brought along), who managed to fix his line and have us in and out of the ER in 4 hours!! This could have turned out very badly, if we hadn't been able to save the line...the surgeon on call was already getting very worried about access. We all know just how precious this line is. There were some very tense moments, and I think we all said a few prayers. But after the repair was done, the line flushed beautifully. We cannot use his line for 24 hours now as we have to let the glue dry. So we had to have a peripheral IV put in to run fluids overnight. Thanks to the advice of Doris, I was able to convince them to let us go home with the IV in and run fluids at home. With the bed crunch at the hospital and the amount of bugs floating around, they were more than happy to let us out of there. Tonight I can start using his line again and take out his IV...and as long as it works well, this will just be a little speedbump in our week.

Broken

Off to the ER...Noah's central line broke.

Mothers Day

Mothers day was very nice. The first one that hasn't been spent in hospital in a while. The snow was gone and it turned into a beautiful day. I got to sleep in and Brad and the kids brought me breakfast in bed, which was thoroughly enjoyed. After church we went for ice cream, and then had a lazy afternoon, just enjoying being together. A good day...a day of reflection...

Sometimes I find myself getting so caught up in the "doing" for the kids...bedtimes, meals, appointments, homework, the neverending medical "stuff"...it's easy to forget just "being". Yesterday was a good reminder to just "be" and enjoy living...for all too soon these days will be gone. Despite the craziness of these times, these really are the days of making memories. I want to be able to look back on these days and remember the good times...the giggles as we push Noah on the swing, the pure joy as Joshua presents his handmade gift, the neverending chatter as Kailyn tells a story. How I love them all!

This motherhood thing is not an easy road...any mother who has had to watch their child suffer knows this. It tears you up, shatters your dreams, and breaks your heart a million times over. But none of that compares to the blessings...the love and joy...the fullness that comes with being a mom.

A few people emailed me the same poem yesterday, all highlighting the same part! It's a poem I've heard many times over, but this particular verse hits home...

"...Before I was a Mom, I never held a sleeping baby just because I didn't want to put him down.
I never felt my heart break into a million pieces when I couldn't stop the hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom..."

Snow!

This is what we woke up to this morning...Our new patio furniture is being put to good use.

Is summer ever going to come???

The Calm

We invested in some new patio furniture yesterday just in time for this beautiful weather. The boxes turned out to be hours of entertainment. Now, how am I ever going to get them thrown out??

What is it with kids and boxes anyways??

It was a quiet week after our plaster fight at RCC. Bloodwork on thursday went well. We also met with the ostomy nurse to try out a new ostomy bag on Noah's stoma. It's still not working well, and his skin is once again breaking down. So I've given up with the bag for now and we are just covering his stoma with gauze. It's a minor frustration really, but having that stoma repaired cannot come soon enough. No surgery date yet though.

We are in the calm right now...how long it will last before the next storm hits, we never know. It's difficult to settle in the calm...to enjoy the calm...when I am always wondering when and where lightening will strike. I long for some nice boring days...to be able to plan out the summer months ahead, instead of always wondering if that day will bring another hospital stay.