Ear Pillows

About a year ago now Kaitlyn started having continuous problems with breakdown on both ears from having to constantly lay on them. Even off-loading by rolling her from side to side didn't work. We would get raw skin that would lead to infections even though we kept the skin as clean and dry as humanly possible! At one point our infections were so bad we had to see plastic surgery as we thought that the infection might be in the cartilage of the ear!!

When our pediatrician told us how serious the infection could be if it were in the cartilage of the ear we knew we had to find a way to get Kaitlyn's ears up off of the surface she was laying on! I thought that if Kaitlyn were to lay on a pillow with a hole in the center then she could still be sidelying while having her ear completely suspended (zero pressure)! (Sidelying for a child with SMA type 1 is essential as they cannot swallow. It allows them to pool secretions in their cheek and even spit out secretions so that they do not aspirate.)

I like to use flannel fabrics when making my pillows. I find flannel absorbs moisture quickly and washes really well. The flannel is also soft and I find it irritates Kaitlyn's skin less. I started with a circle of fabric slightly larger than Kaitlyn's head. For us at that time a dinner plate worked great as a template for marking my fabric. Any circle shape the right size will work to make a pattern for cutting out your fabric. When cutting out my circle I always fold my fabric in half with the right side in. This way I cut out both sides of the pillow at the same time. I then take these two circles with the right side still in, and I sew around the outside with a sewing machine.

I then fold the circle shape in half and cut out a small semi-circle in the middle. The hole in the center of the pillow does not need to be any larger than your child's ear! The smaller the hole the easier it will be to position your child on the pillow when it is finished. I always find that if I cut out the hole to fit Kaitlyn's ear then the finished product will be slightly larger than her ear.

I then turn the fabric right side out and begin sewing up the ear hole. For Kaitlyn's pillows I like to turn the fabric in and sew a nice smooth edge (seamless). This way there is no edging to rub against her ears. Once I have the hole about two-thirds closed I then stuff the pillow with a hypoallergenic polyfoam stuffing. I like to use a proper pillow stuffing as it holds it's shape quite nicely through continuous washings! Once the pillow is stuffed full I sew up the rest of the ear hole. I stuff my pillows full but not too firm!

I have had several families ask me recently how I make Kaitlyn's ear pillows so I thought that I should just post how I make them :) I hope this helps any families interested in making their own pillows! I know for us Kaitlyn is on an ear pillow 24/7 now!!

PICU and Another Lengthy Hospital Stay

Remember when Kaitlyn was sick with a pnuemonia back in September?? Well it would seem that we never really ever got that cleared up!!

Kaitlyn was on ciprofloxacin (broad spectrum antibiotic) back in September for an illness that seemed bacterial in nature. We know Kaitlyn colonizes pseudomonas in her lungs so cipro is always our drug of choice when she gets an infection. Well back in September cipro didn't work to get rid of the infection. Kaitlyn ended up hospitalised on IV antibiotics. The IV antibiotics were given for two weeks (one week at home) and then another eight days on two broad spectrum oral antibiotics!

After about a week Kaitlyn started with increased secretions again. So we put her back on oral ciprofloxacin. She seemed to respond nicely to the antibiotic this time and we breathed a sigh of relief! However we did run cultures also and the cultures grew heavy growth psuedomonas and heavy growth Staph. Aureus among other bugs. However since Kaitlyn seemed to be getting better we assumed that the buggies weren't infectious but rather just colonized in the lung :(

We finished a ten day course of antibiotic at home. After which Kaitlyn was healthy for two whole days! She went from healthy and happy sitting up and acting normal to wet and junky lungs in twelve hours!! We chose not to expose Kaitlyn to all the sick kids flooding the ER late at night. I stayed up and did therapies every three hours all night last Monday night. In the morning we took Kaitlyn to ER. It would seem that she didn't appreciate being moved! She crashed down into the seventies a couple of times in ER and was having a rough time coming back up! We increased her vent settings and bled some O2 through her bi-pap (it took both to bring her up to 90% O2). Typically we don't like the O2 through the bi-pap, but Kaitlyn's PCO2 level was fine and our goal was to discontinue the O2 as soon as possible!! They accessed Kaitlyn's port and began IV antibiotics right away. I'm glad that they did. She was running a high fever and we believed that she probably had something bacterial as nobody else in our house was sick.

Because Kaitlyn was a little unstable she made the nurses and ER doc a little nervous I think. They decided to send her to PICU. We have not been to PICU for an illness in over a year and a half. As it turns out PICU was an absolute nightmare!!! H1N1 EVERYWHERE!! And me without my vaccine yet...EEEPPPPS! Needless to say I was washing my hands like crazy! As luck would have it, Kaitlyn responded well to treatments and we got rid of the O2 through the bi-pap the next day. We did cough her with O2 for a day longer. X-rays showed a pneumonia in Kaitlyn's upper right lung. She also had some infiltrates throughout the lungs (areas looking mucousy/wet).

After spending one night in PICU we were able to move Kaitlyn to regular floor. This way she could be more closely followed by doctors and specialists that know our daughter best! Also Kaitlyn's pediatrician works in our children's hospital. This is great for us, as any time we are hospitalised we are admitted under our pediatrician's name :) Not a soul knows Kaitlyn like her pediatrician, and while she is not an SMA doctor we love her as she is willing to work with us and listen to our input!! As you know this is huge for our SMA families....just having someone who will listen to and try some of our unconventional ideas :P

Since last Tuesday we have been waiting for Kaitlyn to show some signs of improvement! Her fever is gone, she is not needing O2 in any form and her bi-pap settings are back to normal. But...she is still junky! We took an x-ray yesterday that showed the pneumonia in the upper right lobe has cleared (there's no consolidation anymore). But there are infiltrates throughout the lungs and appears in particular to have spread into the lower right lung! URG!!! In a consult with Infectious Disease yesterday, they confirmed that Kaitlyn is on the right antibiotics to cover the bugs she has...so why is she still sick?? Today we have to redo cultures and they also want to redo her H1N1 test and add some plasma tests (?). You know I almost hope that they find something viral!!! Crazy how we used to wish for Kaitlyn NOT to get a virus! Throw in a couple of super bugs and all of a sudden we are praying for the viral CRAP!!

Hoping my next post is from home...

New Ramp!!

We bought our new home and moved in back in August. The first thing we knew that we had to somehow make happen was wheelchair accessibility for our new abode. For three months now Kaitlyn's Wheelchair/medical stroller has had to live outside in our van :( Banished alongside the stroller was our back-up cough-assist and true sine inverter (needed to run said device). This equipment is very expensive and difficult to procure. With snow and cold weather threatening to arrive we have been worried about the equipment being stored in our van.

Tim spoke to our Social Worker at our children's hospital about needing a ramp and asked if we could get any help building. Our social worker wanted to know if we needed help building or funding supplies. We of course said that we would be happy with whatever help we could get! Tim and I were hoping for some guidance and expertise in how to build an accessible ramp. A few short weeks later our social worker told us that we would have a couple of contractors come out to assess our needs for a ramp. We had high hopes that the pair would give us some expert advice on how/where to build our new addition.

Then two weeks ago we had a call from the contractor saying that we would be receiving supplies to build a ramp and they would be out shortly to begin the build. Before the call we had no clue that any arrangements had been made for a ramp to be built!! We knew that our social worker had been looking into getting some funding for a ramp, but we had no idea that the funding had been found!

Our supplies arrived a couple of days later and the contractors the day after! They were wonderful! They were even kind and patient with our boys, who just HAD to be out there observing their every move :) The contractors were here for three days and finished our new ramp :)

It is so hard for us to put into words how we feel about having this ramp built for us! Unless you have a child like Kaitlyn and truly understand ALL that she entails each and every day, then it would be hard for you to realize just how much a simple ramp can do to make our lives that much easier! Kaitlyn has frequent appointments at our local children's hospital, not to mention the very few family outings we get together. Taking her out of the house is a huge undertaking!

Before the ramp we had to carry supplies out to our van and load up Kaitlyn's stroller piece by piece! This took several trips back and forth to the house lugging everything out by hand. When Kaitlyn travels out of the house we have to take ALL of her equipment with us. She is a vent dependant child with an extremely unstable airway! The last step was to carry Kaitlyn out in my arms, climb into our non-accessible mini-van, work my way around her stroller and get her settled without breaking any of her limbs! Kaitlyn is a big girl and carrying her in tight spaces is becoming increasingly difficult!!

With the ramp we can load up Kaitlyn's stroller, supplies, machinery and angel baby :) Then all we have to do is stroll her out, down the ramp and into the van! This is just so much easier. Especially in the bad weather!! It is also so much safer both for Kaitlyn's equipment and for Kaitlyn :) With the ramp, an outing of a few minutes can be done without a second thought, when without the ramp it wasn't even considered. This is a huge plus for a little girl whose first words in the morning are "go, go, go"!

Supplies for our new ramp :)

Supplies unloaded....ready for the contractors!!

First snowfall of the winter season covering what was accomplished Day 1 of the build.

Our finished ramp!!! :O)

Some recent pics of the kids:

Feeling Better Again

Kaitlyn has been feeling much better the past two days! We are back to normal bi-pap times and secretions are much more manageable. I can finally carry her around on my shoulder again and boy is she taking advantage!!!

Kaitlyn goes to get her TLSO tomorrow. A TLSO is a body brace (like a rigid corset) that hugs Kaitlyn's torso so that she will be able to sit up without slumping all over!! It should help make it easier for Kaitlyn to breathe and make positioning her easier. It will help us keep Kaitlyn's back straight to avoid or prolong any surgeries to correct displacement in the spine! Currently Kaitlyn has NO noticeable curvature of her spine :) Our OT/PT is finally convinced that she needs the additional support when they tried her in the new floor sitter they are having made for her! She just collapsed into the seating...they have never dealt with a child with such low tone before! We are all learning as we go.

We are also trialing a couple of options for drive controls for a powerchair tomorrow. One is the mini proportional joystick. Kaitlyn hasn't done extremely well with this joystick :( They have left it so long that now she has lost almost all function in her little hands :((( The second option we are trialling is fibre optics :) The fibre optics are little pinpoint sensors that can be placed anywhere that Kaitlyn has predictable movement. The biggest problem with driving a powerchair like this is that it could take a LOT longer to learn.

The biggest problem by far is not having a proper chair for Kaitlyn to trial this sensitive equipment. They are having a really hard time figuring out how to position Kaitlyn's hands to give her the best function to be able to access the drive controls! Wish us luck that we can figure this all out. I am getting really tired of listening to Kaitlyn cry everytime Alex or Owen gets up and leaves the room and she cannot follow!