In Hospital

Where to begin....

Kaitlyn had her Port-a-cath surgery August 27th and like I said everything went just fine! She came home and had a slight increase in secretions which is normal after being intubated. After about 3-4 days she is usually back to her baseline. By the Monday (four days) post surgery Kaitlyn's secretions were on the rise and not getting any better. She also started with a bit of a cough on Monday. By Tuesday she was bi-pap dependant, but not because she was desatting. She would go into fits of continuous coughing every time we took her off of bi-pap. Secretions were still on the increase and we thought that perhaps she was getting a cold. By Wednesday post surgery Kaitlyn spiked a fever of forty. Considering she just had her port placed we worried about infection in her blood so we brought Kaitlyn into ER to have them run some cultures and figure out what was wrong.

The cultures from ER all came back negative and in the meantime we had taken Kaitlyn back home to care for her. So from Wednesday until the following Monday (1 week since onset of symptoms) she still had fever that would spike to forty every time we took her Tylenol away and she was still obviously junky and sick! On Monday (Labour Day) we took Kaitlyn into ER again as she obviously wasn't getting any better. She had even come down with a new issue of not digesting her feeds very well. Kaitlyn was started on Ciprofloxacin as it is the antibiotic of choice due to her colonization of a particularly nasty bacteria pseudomonas.

After starting an antibiotic Kaitlyn usually responds very well to treatment. Within a couple of days we can witness a remarkable change in her symptoms. This time after five days of antibiotic treatment in our home she still wasn't getting better. She was only digesting about 1/3 her normal volume of fluids. We also had to take Kaitlyn's normal formula down to a base mix, which means that she was getting a lot fewer calories and less of all other nutrients. We did this as Kaitlyn won't digest her feeds otherwise. So we brought Kaitlyn back into ER yesterday (Friday) as we really felt that she needed IV antibiotics and IV fluids.

Our stay in ER was really ridiculous! They kept us there for a total of six hours! SO much for her protocol!!! Five hours after waiting around ER the attending pediatrician from the floor told us that they would admit us for the night, but that they didn't want to change any of her meds. and they just wanted to observe her through the night!!! I told the physician that we've BEEN observing her or the past five days at home and she is not getting any better. I said that if I wanted to observe her for one more night then I would have kept her at home!!! There was a resident shadowing the physician and I thought his eyes were going to pop out....hehehehe!! Long story short they called Kaitlyn's pediatrician who is in charge of one of the teams at our hospital and whom Kaitlyn is always admitted under!! She told them to start the IV meds. but left the fluids up to them. So IV meds were started Friday night and fluids were not.

This morning (Saturday) Kaitlyn is about the same. Because they didn't start the fluids like we had wanted she was pretty dry...so she sounded great when the nurses listened to her. This as we know can be dangerous as if she gets too dry we may not be able to mobilise the junk in her chest to be able to get it out! When Kaitlyn's pediatrician came in to see her this morning she wanted her started on IV fluids. They don't want to give her much, just enough to keep her better hydrated so her secretions won't be so thick!

Overall I think that we needed to be in hospital and now that we are here she will be followed properly so that we can figure out how to keep her from getting sick because of pseudomonas. We may have to start some sort of preventative regimen in order to keep her healthy! Oral cipro alone doesn't seem to be working for her anymore. I'm glad that she will be followed by Infectious Disease from now on...we have been asking for this for some time now! Infectious Disease wants to leave her on IV cipro until they can figure out exactly what it is Kaitlyn seems to be culturing and then hopefully we can check for sensitivities and get her on one or more antibiotics that will knock those buggies out of her!!! Infectious Disease also wants to run a host of other tests (not the standard run of the mill). I am much happier today knowing that they are finally going to DO something to help.

I have observed today that Kaitlyn's tidal volumes are pretty low (60-80) depending on her leak!! That's pretty low for a child her weight. I have also noticed that she is paradoxical breathing while on her vent, and this shouldn't be the case. So far her blood gases are good, but we may have to increase her pressure settings to make her more comfortable so that she isn't having to fight so hard to breathe!!! No wonder she has been sleeping almost 24/7 at home! I don't know how long she has been breathing this way either...I hope not long. I always wonder how much I fail to pick up on when we are home...as I have more responsibilities at home and more distractions. When we come into hospital Kaitlyn is my number one concern as I know my boys are being WELL cared for (Thanks to Grammy and Grampy!!!).

I'll keep everyone posted on how we make out! Right now we are where we need to be!!

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!

Settled!!

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!!!!!!!!!!

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!

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 again....horse 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)

Proud New Homeowners!!

We are now the new owners of a four bedroom bungalow! It is a lovely large home with an ocean view! We move in mid-August and are so happy to be leaving our moldy apartment!! We have a lot of work to do before we can move into our new home. We have to build a ramp for Kaitlyn. Right now her medical stroller/wheelchair can not even get into the house!!! Then we need to build a BIG fence around the perimeter of the property. These things are going to cost us a pretty penny!!! But hopefully we will manage to pay for it all. I have no idea how the ramp and fence are going to happen with only Tim. Hopefully he can scrounge up a couple of buddies to give him a hand. It might not be so bad if he had actually ever built anything before, but he is hoping to get some advice and learn as he goes! We also need a chimney insert to run a woodstove...but that may have to wait until next winter! I think we have a smaller woodstove that would get us started.

Kaitlyn and the boys are going to LOVE this new home. They will be able, once we build a fence, to go outside whenever they like :o) Even Kaitlyn LOVES the outdoors. I can see us spending a great deal of time outside! Guess I better start knitting the kids some mittens. Owen likes homemade mittens the best :o)

Kaitlyn has been doing really well. I guess she just needed a full month of antibiotics to help her get the psuedomonas under control. Since she colonizes pseudo. we will never really ever get rid of it! But hopefully we will continue to be able to control it when it flares up! We did learn that she has some resistant pseudomonas. This is a really good piece of information for us to have. Now we know that if we treat with antibiotics and nothing is happening, then we have to take her in to the hospital ASAP!! Hopefully it will be a good long time again before we have another flare up.

The kids have been asking and asking for a kitten!! We would never have considered it in our apartment, but Tim did tell the boys that if we ever moved into a house..... Well, we are getting two kittens mid-August! They will be a nice "welcome to the new house" surprise for the boys!! They are going to be absolutely thrilled!! I cannot wait to see their little faces when they see them. Our boys are really very good with animals, especially babies! Even though they are so rough and tumble with each other. Alexander absolutely adores anything feline!!! He IS a cat on a regular basis :o)

I'll let everyone know how the ramp, fence and the packing go :o) The next time I post we may be in our new home!

Pseudomonas...Strep Throat...House Hunting!

Wow I cannot believe it has been almost a month since my last post. Several people have asked how we are doing. Well after Kaitlyn got sick we did a two week course of antibiotics. Then Kaitlyn was off antibiotics for two days and started up with green thick secretions and wet lungs again. We took her into ER for a sputum sample. The ER doctor, not really knowing Kaitlyn, and none of our regular doctors being available advised us to put her back on her antibiotic. Two days later we found out that Kaitlyn had cultured peudomonas yet again. When our pediatrician called we found out that Kaitlyn now colonizes resistant strains of pseudomonas. Resistant to the antibiotic we have been trying to treat with. Since Kaitlyn seems symptomatically better while on the antibiotic our doctors have recommended finishing this second two week round of antibiotic and then take her off and see how she does! If she gets sick again with the "green stuff" then we will be forced to try a new med. Not too sure what that is going to be but our Ped. has assured me that she and our pulmo. have a plan!!! It's my hope that when we stop this fourth week of hefty broad spectrum antibiotic that the ugly green monster stays away!!!

Tim and I are just getting over strep throat. I've had a sore throat for almst a month, which isn't uncommon for me. I get sore throats with allergies, weather change, dry air, environmental changes and every virus that goes through he house! But I had about three days of unbearable sore throat and it felt like strep...I used to get strep throat a lot in my younger days. Anyway, after a few days I started to feel better but Tim got worse. He ended up with a sinus infection!! Not fun!

We are still searching for a house! We really need to get out of this apartment! We have found a home that we really like and are in negotiations to buy this house. There are some issues, as I'm sure there always are!! But I'm still hopeful that everything will work out. The place is a little farther outside of the city than we might prefer to be, but not so far that we feel that we are putting Kaitlyn at any risk. It's not too far from the children's hospital. It may make our nursing a little tricky...not too sure how many of Kaitlyn's current nurses will be able to make the trip out there. Who knows the move may bring some new faces.

I don't want to rant about the house we have found that we like in case we don't get it. But I would like to say that it is one of the best we have veiwed as far as meeting most of our needs. We wanted a home with MOST of the living space all on one level. Not easy to do in a small city! People tend to build up...not out! This home is a largish bungalow with a large yard. There are four nice sized bedrooms on the main floor. A huge kitchen, and a big living room. There's a dining room off the kitchen and a nice sized bathroom. The hallways aren't even cramped!! I could totally see a power chair zipping around this house ;O) The basement is partially finished. One bedroom, family room and half bath. With a large unfinished rec room (can you say toy room folks!!!!!). That's enough...you'll have to stay tuned to see if we get the house ;O)

A recent pic of our pseudomonas (bacteria) filled girl! She's always happy, even when sick!

My silly inseparable boys :o)

Friends of ours invite us over evry so often. We are always so thankful for their hospitality and enjoy very much each and every visit! I have very few snap shots of Kaitlyn and I together!

These are Kaitlyn's new "shoes" as Alexander calls them! They are orthotics to keep Kaitlyn's feet from dropping and will hopefully help to prevent contractures.