Sunday, August 30, 2009

Port-a cath....Check!

Kaitlyn had her port-a-cath placed this past Thursday! She made out fantastic!! Her surgery took about two hours and she was taken straight to PICU afterwards. We wre allowed into PICU before they extubated her. I wanted to be the first to assess her before they pulled the intubation tube. She was starting to wake up, looked good and lungs sounded clear so we went ahead and pulled the tube! We put her right on bi-pap and she maintained sats of 100% (perfect). Overall this surgery has been one of our easiest :o) She had a bit of discomfort for the first couple of days from the incision in her chest and the cut down on her neck, but nothing that couldn't be managed with a little bit of tylenol.

Because Kaitlyn has a history of blood clots (in both groins...both venous and arterial!!) she will need to remain on anticoagulation meds for as long as she has an indwelling catheter! It seems as though this may be the toughest part of placing the port for Kaitlyn. The haemotologist has her on warfarin to extend her clotting time to prevent clots forming around her indwelling catheter. For the first 24 hours warfarin acts as a coagulant instead of an anticoagulant!!! So we had to have Kaitlyn back on Enoxaparin injections. We were allowed to bring her home Friday night, but only on a pass. They couldn't discharge her properly as they needed to check her INR levels Saturday and the labs aren't open on th weekend for outpatients. When they checked her INR levels (to see what her clotting rates were) her level was 8!!!!! They want her level to read between 1.5 and 2!! Crazy. She had to have a dose of oral vitamin K through her G-tube and we had to stop both the Enoxiparin and the warfarin for Saturday night. Then we got to come home Saturday night again on pass from the hospital as we had to take Kaitlyn back into the hospital to have her levels checked again Sunday morning! Kaitlyn's INR level was 1.6 Sunday morning which is exactly where we want her.

This also means that we were finally discharged from hospital and Kaitlyn is back on the warfarin. We have to have her levels rechecked on Tuesday and I'm hoping that her levels are fine by then too. Once she is regulated on the warfarin she will only need once a month checks to make sure that her levels are fine. Her levels shouldn't change too much from day to day as Kaitlyn's diet never changes. The only time we will have to have her levels checked more often would be when she is ill or when she is taking an antibiotic.

Anyway we are thrilled with how she has done so far and are hoping she continues to do well with this port! It sure will make things easier for her when she needs venous access!

Saturday, August 22, 2009


We are almost completely moved into our new home!! The kids are loving it :o) The boys are spending time running in and out of the house, and Kaitlyn is even getting outside more. Just not on days that are too hot! We still need to figure out some way to build a ramp!! We cannot bring her medical stroller into the house! This is a huge pain as it is a good spot for her to sit sometimes :o(

Our two new additions are settling in just fine :P They are quite the household terrors now! In case anyone missed it...we now have two new kittens in our house! Owen and Kaitlyn are smitten!!! Alex just wants to put the sleeper hold on them :P Poor Kittens!

Kaitlyn is scheduled for surgery for 8am on the 27th of August! We only decided this the beginning of August, and as always our hospital made room for our girl!! They seem to really love her there :o) Our surgeon is the best and we have full confidence in him. He won't take her into surgery before making sure that he has a particular team in place for surgery, anaesthesia, and PICU!!! We love him! Kaitlyn is having a Port placed. A port-a-cath is a tiny medical appliance that is placed under the skin. A catheter connects the port to a vein. The port then sits just under the skin and can be palpated and used for central venous access. What does this mean for Kaitlyn? It means that Kaitlyn would never need to feel another needle poke! A blessing!! The skin over the port can be frozen with a gel; then a needle would access her port without her ever needing to feel another poke.

This will save us a lot of worry!! We will never have to worry about blood work ever again. We will finally be able to have Kaitlyn's blood drawn for genetic testing for a blood disorder!! (As she develops blood clots). It will be a huge relief when the port is placed and it is all said and done.

Our two new arrivals!! Introducing Blacker (or Blackie) and Spider!!

Owen learning to play with his new Kitty :o)
Spider is a little more timid...or is it SMART!! hehehe
Looks like Owen is doing a good job. Kitten is Smitten :o)
Kaitlyn in her new home.
Owen showing Kaitlyn Blackie!
Spider is coming around :o)
The Lawn Mower Parade :oD Around and around and around!!! They just wouldn't stop that night!!!!!!!!!!

Sunday, August 9, 2009

Our New Home

We spent the weekend days at our new home!! YAY! The kids ALL love it there! On Saturday I think we were at our house for a total of about twenty minutes before there was a knock at the door. A neighbour boy (eight years old) had heard tell we were moving in and had children :o)Then as I'm walking from kitchen to back deck to check on the kids....what do I see leaning against my house peering into my kitchen?? A big golden retriever dog...wagging her tail and obviously very used to my new home!! She didn't seem to mind that I didn't look/smell like the old owners!! She was very friendly and (like all goldens) lo ved the attention from the kids :o) When we bought our house we had no idea that the price included a neighbour boy and another neighbour's dog!!! Both kid and dog spent the entire afternoon with us :o)

It's funny how negatives about a potential house can take a backseat to all the positives you are focusing on. There are a few things about this new house that will need to be upgraded...some fairly soon and others will have to wait a couple to a few years! The kitchen sink is aweful!!! Pretty grungy looking and very scratched up. One of those sinks you look at and cringe at the thought of having to do dishes in it...not to mention Kaitlyn's things!!! The main bathroom needs to be redone (but this will have to wait). It is serviceable, but the tub does have a couple of chips in it :o( There is a carpet in the master bedroom that I somehow hadn't noticed when we viewed the house!! And the carpet is REALLY grungy!! It's one of those carpets, it's so aweful that we might have to rip it up and walk on the plywood boards for now until we can afford some decent flooring (NOT CARPET!!!!!). The finished rooms in the basement need upgrading, but can wait. there are carpets in the living room and dining room that I would eventually like removed.

In the backyard I found a wonderful pot-bellied stove :o) I really like these little stoves. They are great for outdoor social gatherings and just fun for the family on summer nights! The kids are going to love lighting it up for the first time :o)
Here's Kaitlyn just waking up from her first nap in our new home :o)

Gee.....Wonder what woke her up?? hehehe Introducing the neighbour boy :o)
Kaitlyn's new pet!! She LOVES this dog!! Wonder why??
The view of the ocean!
The neat little pot-bellied stove nestled in our backyard. Can't wait to light it up!

Monday, August 3, 2009

Week-end Getaway!

Tim and I have been toying with the idea of taking Kaitlyn to our hometown in Annapolis Royal for some time now. Both Tim's and my families are from and still live there. Kaitlyn and I have not been home for almost two years! She was in and out of the hospital sooo much that it just didn't seem safe enough to travel that far from our Children's Hospital. Not that now seems so much safer, but Kaitlyn has been very stable and all of her equipment is 100% portable now! We even have back-ups for most of our machines. (Back-up ventilation next!!) When my sister announced she was getting married this summer (29th of August) we had sort of toyed with the idea of attending her wedding. Then Kaitlyn got a tentative surgery date for the 27th of August. Anyway, when this long weekend arrived...we just decided to take off!

Travelling with an extremely fragile child....nerve wracking! We had a good weekend, don't get me wrong, but it is a little unsettling being so far from the one hospital that sort of GETS our daughter. It was Natal Day weekend in our hometown. Our town celebrates every year with reenactments at the Fort Anne Historical Site, a small parade, Sunset ceremonies, fireworks, Crowning of a Queen Annapolis Royal, pancake breakfast at the local firehall, etc. It's a busy weekend and while we didn't attend half the functions...we had a really good time with our family.

Kaitlyn's favourite part of the weekend was our visits to my mother's home where my youngest sister has turned the place into quite the farm!!! They have goats (at least three), two cows, five horses, chickens (complete with rooster), three dogs, and two cats. Kaitlyn is an animal LOVER!!! She beams for dogs and was particularly taken with the goats and cows too :o) And no bad reactions from the allergy department. But then like a lot of allergies exposure is key to reaction and Kaitlyn has never been exposed before. However, it's not likely that we will be repeating a trip like this again anytime soon!!! It was a LOT of work! We are also on alert for the next couple of days. Kaitlyn was exposed to sooo much this weekend that was completely outside of her normal environment. I guess we'll just have to wait and see and hope we kept her safe!

Here are some pics. of our weekend:

This is Kaitlyn on her way to Nanny's! She was so excited she talked for the first hour of our trip. Then.....she finally gave in and conked out for an hour long nap :o)

Kaitlyn in the middle of Nanny's kitchen table having a bi-pap break as she wouldn't take a nap! She's chewing on a popsicle stick....not of the blue variety this time folks ;o) She is laying on her first sheep skin! My great Uncle bought this for our girl...we hope to make her stroller and van travel more comfortable.

Alexander having his popsicle in the middle of Grampy's new chair!!! Please don't make a mess buddy!!!

Owen with his shadow ;o) My Mom's dog LOVES Owen!!

Kaitlyn giving the horses some lovin'. She was talking the ENTIRE time :o) The girl is a nut over horses!

And lovin'!

Time for some Cow lovin'!!! This was great fun :o) The baby cows just wanted to suck on her hands!!

One of the baby goats!! They wouldn't hold still for a picture...I snapped this one quick!!!

This is Kaitlyn earlier today on her way to the Parade. She really loves her new sheep skin!!

Here we are waiting for the parade! Kaitlyn sat up for the entire parade and was loving all the excitement!

Kaitlyn watching the parade :o) She really like it!! Want to know what her favourite thing was....scroll down!!

The TRACTORS!!!!! YUP ;o) Not sure why, but she was even saying "tractor...tractor".

Alexander after the parade with some of his loot! A sucker and his beads!! Settled in for the long haul back home :o)

Kaitlyn barely made it four minutes after we got her packed into the van and on her bi-pap ;o) She too got lots of loot. A balloon, foam lobster (what else in Nova Scotia??), and two sets of beads! She had sooo much fun :o)