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.

Under the Weather

Kaitlyn has been under the weather the past few days. I haven't had much time to post about it as Tim and I have been busy doing therapies around the clock. She started with increased secretions and a bit of a temp. last Thursday evening. By Friday morning she was pretty goupy and had a temperature. Secretions were pretty bright green (reminiscent of our pseudomonas days!). Anyway with the color of the secretions, how fast this all came on, and the fact that nobody else was sick made up our minds to start her on an antibiotic. We did send in a sputum sample for culture, but haven't heard back yet. Hopefully I'll remember to call and get our ped. to find out tomorrow!! We started her on Cipro. which is a pretty broad spectrum (pseudo-killing) antibiotic. Hopefully it'll do the trick!

She still has wet lungs even today! This is just sort of hanging on! I was hoping that she would be all better by Wednesday as we have a neurology clinic. But even if she makes a remarkable recovery overnight, there will still be residual increased secretions on Wednesday. I guess she will have to do her first clinic bi-pap dependant!!! What a long day that will be for her. Thank goodness we are fully mobile for powering all of her equipment!

My boys are coming home tomorrow. They've been having an extended weekend with the grandparents so Tim and I could focus on Kaitlyn. Perhaps once they're home Kaitlyn will get better faster....she really dislikes missing all the fun (can't "run" through the house chasing boys while attached to a machine and moving around too much makes you choke!!!).

I cannot believe how big my girl is getting. I remember the days when she would sleep at the bottom of our bed (when sick) and there was still enough room for Mommy and Daddy. Not anymore!!! Daddy gets to sleep on the couch now!! SHHHH...She's sleeping!

This one is of Kaitlyn holding her magic wand that Lexx and Ayva sent her from Alberta. She LOVES it, and particularly loves when the air from the bi-pap mask blows the wand making the little sparkles flutter! She is also making good use of her new Z-flo positioners that Karah sent me from Kentucky!!! Thanks Karah they are keeping my feet in a better position while I wait for my new AFO's!!

Having a taste of Daddy's salad. She fussed when Daddy tried to give her anything but greens!! She licks and licks and licks....saying, mmmmmmmmm!

Alex never has a nap anymore, except on rare occasions when he wants to be held and then "conks" out. Look how big he is getting!

2009 Halifax Walk for Muscular Dystrophy

We went to the 2009 Halifax Walk for Muscular Dystrophy yesterday (Saturday June, 13). We have been wanting to go to an MDA function now for quite some time. It always seemed like there wasn't the opportunity in the past or Kaitlyn was sick. This time everyone was healthy, we had a good day to go, and we all had a great time.

It's nice to be able to show our support to such a wonderful organisation. Kaitlyn's picture was in the 2009 brochure for the Walk this year. It was a lovely honour and we were glad to be able to join them. Tim was able to raise a little money through sponsors for the Walk. Friends of ours donated both monetarily and of their time for the occasion. We were glad for the company! Thanks Dave, Amanda, Ryan and Emily! Tim and I would like to thank everyone else who sponsored our family for the Walk. It means a lot to us to be able to give back a little of the money that has been provided for Kaitlyn by MDA to buy essential medical equipment! As always we are grateful for the support!!

The boys and Kaitlyn had a good time. The Walk was led by the 33rd Halifax Pipes and Drums. They are a marching band and the kids LOVED the loud music! The band led us down the Halifax boardwalk along the waterfront. After the walk the kids all played at a playground on the waterfront. Fun was had by all!

When we got home we noticed something awful! Kaitlyn has sunburn!!! I felt awful. She has such fair sensitive skin. We put sunscreen on the kids, but I meant to pack the sunscreen and put on a nice thick coat just after we got there. Well the sunscreen got left at home! Poor Kaitlyn paid the price. We didn't have the canopy up on her stroller because Kaitlyn likes to see EVERYTHING and the weather was overcast most of the afternoon so we really didn't think anything about sunburns!!! The kids were in fleece coats most of the day too. It was nice, but not hot!

Some pictures from our day:

The kids on the board walk.

33rd Halifax Pipes and Drums

Kaitlyn getting her T-shirt for the walk.

Kaitlyn telling me something...she talked continuously while we were out. She was in a reall good mood. The breeze was blowing and she just LOVES the wind!!

33rd Halifax Pipes and Drums lining up for the Walk.

Photo opportunity after the walk!! SAD but I think this may be the very first family photo we have ever had taken!!!

Kaitlyn's sunburn!!!

No News Is Good News!

Oh my goodness! I didn't realize how long it has been since a posted! OOPS! But the good news is that there really hasn't been much to post about! No news is good news.

So we had a head cold go through the house two weeks ago. Alexander started with a runny nose after getting back from the grandparents' the week before. I thought that it could be just allergies, but then the sniffles didn't seem to go away. Then he got pretty stuffy. When Owen woke up one morning with a swollen and red eye and a runny nose....well then i knew that we were dealing with a cold. Try as we might, it is almost inevitable that Kaitlyn is going to get the cold once it is in the house.

When Kaitlyn gets a cold it always seems to hit her really fast. This time was no different. Kaitlyn was presented with increased secretions one afternoon. Increased secretions make Kaitlyn choke as she has no mechanism to protect her own airway. Kaitlyn lacks the ability to use her tongue to gather secretions and prepare them for swallowing. She also has a highly unpredictable swallow. Sometimes she manages to gulp saliva down the esophagus and sometimes she aspirates saliva into her trachea. This causes her to choke and sputter gasping for air, as she also cannot cough!! Imagine what it's like when you swallow something when it goes down the wrong pipe...we've all done it! Now imagine that you cannot cough that aspirant back up. Not only does it hurt like a beast, but you cannot breathe either. That's what it's like for Kaitlyn. We have to sit next to her when she is sick and suction her fairly constantly. If we didn't she would choke! I have a point to my little story.

The morning after presenting with increased secretions Kaitlyn gets up and secretions are still increased and are now thicker (common with a cold), secretions were colored, she had a fever, and she couldn't stop gagging and choking. So she became bi-pap dependant. Her sats were perfect but she could not tolerate even a very few minutes without choking/gagging. Kaitlyn gags on thicker secretions. Our concern at this stage is that if she aspirates enough saliva she could get much sicker! She could even develop pneumonia or end up hospitalised. So by placing her on bi-pap she is then able to spit out secretions making her a whole lot more comfortable and easier to manage. We are protecting her airway by putting her on her bi-pap. Kaitlyn is old enough to "get" this now! She smiles at us when we ask if she wants bi-pap; she is agreeing that she wants the additional support and security that her bi-pap can provide. We also increase Kaitlyn's breathing treatments to help clear her airway. After three days of pretty continual bi-pap she was able to come off and slowly we were able to reduce her treatments to her normal routine.

Last week we went to the hospital for an overnight stay. Kaitlyn's pediatrician and the RT department wanted to monitor Kaitlyn's O2 sats overnight and have her blood gases checked in the morning. Her O2 sats didn't budge from her normal 99-100% all night! Heart rate was nice and low too....she slept like a baby ;O) I'm so glad that our children love sleep, and that Kaitlyn can go to sleep anywhere as long as she has her bi-pap, her guys (the stuffed animals she sleeps with), and of course her MaMa!!

We've gotten outside on a few occasions just around our building. But at least it's outside! Kaitlyn LOVES the outdoors. She could spend the whole day with the wind blowing in her face. She squeals and squeals!! It's pretty funny.

Now for some recent pics!! Having fun with Daddy!!

Don't ask me what Owen was doing!! Eat or be eaten!?!

Alexander's fake cry face!! It looked even more convincing a split second before this was taken! You can see the beginnings of a smile in his eyes!

One of Kaitlyn's special little grins! This one reminds me of Leah!!

This was Kaitlyn's first B4SMA babies blanket. Kaitlyn was only just diagnosed when she got this blanket.

This is Kaitlyn's NEW B4SMA blanket!! It's HUGE!! Kaitlyn LOVES it! Thanks so much MJ :O)

Fresh Air and an Ambu-bag

Things have been so quiet around here lately that I haven't had anything to write about. This is a good thing in the world of SMA. Today was a beautiful day out! Sunny and warm. I cannot take all three children out by myself (not with Kaitlyn requiring constant monitoring), but we did all go out on the deck to get some fresh air and sunshine! Kaitlyn and the boys had a blast. The boys antics amused Kaitlyn and she kept saying, "cars...cars...cars". We live in an apartment next to a highway...lots of traffic!

Kaitlyn's RT from Vital Aire was by this morning to drop us off an ambu-bag. We've never had one in the house, and while I have seen ambu-bags used many times before, I have never actually picked one up myself. Learning how to use an ambu-bag isn't hard, and we now have a little more freedom, and an extra tool to help if we need it in an emergency.

This is a picture of Kaitlyn relaxing in the fresh air. She was sitting up in her big girl chair, which she has really outgrown!!! Her shoulders are up past the back of the chair! But she did fantastic. She sat up for an entire 30 mins. without choking, and although I suctioned her several times I didn't get anything worth while.

My cool cat, with her purple sunglasses and killer long blonde hair.

Alexander discussing "big trucks" with his sister...."Did you see that yellow cement truck Kaitlyn?"....."Did you see that blue dump truck Kaitlyn?" Followed by big kisses!!

Back-up Cough-Assist!

Remember when I said that we were fighting for a back-up cough-assist?? Probably not, it was so long ago!!! Well yesterday we finally got our new cough-assist!! This is HUGE for us. Another small battle won. We didn't even really have to fight very hard. We requested, gave valid reasons why we needed this essential piece of equipment, and have a very wonderful social worker to help advocate for us....and the rest is history!

The machine was funded by the government and we are very grateful to have it. Without the cough-assist our daughter might still be alive but NOT without a tracheotomy (a tube placed through her neck into her lungs and attached to a ventilator 24/7). Not that I have ANYTHING against a trach. but for now Non-invasive ventilation and protocols are working very well for us. This secondary machine means that if something happens to one of Kaitlyn's cough-assists then we will ALWAYS have a back-up. Our children's hospital has only ONE cough-assist and NO plans to get another. The machine is so poorly understood!

We use Kaitlyn's cough-assist several times a day! Three times a day we do CPT (chest physiotherapy) followed by cough-assist. We also cough Kaitlyn before we place her on bi-pap. So that's 5 times a day we use the cough-assist on schedule. When she has increased secretions from a cold or flu, then we have to cough-her more often. I have had to cough Kaitlyn every few minutes for several hours in a row to help her get through a bad cold. When she is sick she is chained at the hip to this machine (so to speak). We also use the cough-assist anytime that Kaitlyn chokes on her own saliva, or throws a plug (this happens quite frequently).

The second cough-assist will also make our lives a lot easier as we can leave one machine always loaded on Kaitlyn's medical stroller/wheelchair. This will cut our packing to leave the house in half...maybe more!! The cough-assist barely fits on the stroller, it's a pretty tight squeeze. Loading and unloading the machine takes a lot of time.


This is a picture of Kaitlyn's cough-assist. It's a rather large machine (11.5 X 11 X 16.5 inches and weighing in at 24 lbs).





This is Kaitlyn's Medical Stroller/wheelchair. The cough-assist is the BIG grey box-like thing underneath Kaitlyn's seat towards the front of the stroller.





A well loaded down stroller. Cough-assist, inverter, gel cell battery, oximeter, bi-pap, DVD player, and feed pump. Suction we either carry or hang from the handle bars! (phew!)

A picture of Owen and Kaitlyn this afternoon. He just absolutely adores this baby girl. They were laying together watching Diego DVD (yes...that's right...I said Diego!!! It's the ONLY other acceptable programming allowed on Kaitlyn's DVD player!)

A Day Out!

This weekend we went to a friends house for a BBQ lunch. Saturday was over-cast and rainy, but Sunday turned out to be a decent day! There were still some scattered clouds, but it was warm and reminiscent of summer days yet to come.

Because our friends live in their own home (not an apartment like us) they have a room devoted to toys (:O) like, like, like!) and a backyard! Our boys and Kaitlyn had a blast. All of our children just love the outdoors. Kaitlyn really loves the breeze blowing through her hair, she laughs and laughs! She also enjoys the swing set. I hold her and swing and she just loves it!

It was very nice of our friends to invite us over and to have us for lunch. When it was time to go Owen didn't want to leave, so our friends offered to keep Owen longer. Needless to say Owen was thrilled. He LOVES the outdoors and didn't want to come home yet. They offered to keep Alex too, but Tim and I thought that would be a little much yet. Alexander is only two, and while I think that he would be alright without Tim or I there, he is definitely a little more work!! Owen is a pretty self sufficient little guy.


Here are some pics of our day:

Kaitlyn in the playroom watching the boys. She was laughing just before I snapped the shot.



Alexander having a quick break.



Owen pressing all of his "controls" LOL



The swings are a huge hit!



This picture is dark, but Kaitlyn was loving the outdoors!!! I just wish we could get her out more often!



Owen and his ride-ons!!



Alexander, wasn't unhappy just squinting over the sun...I guess I should have remembered their sunglasses!



Owen and his best bud raking leaves! They were having so much fun!



Our friends' youngest! She was having a real blast playing in those leaves :o) Isn't she adorable!