Thursday, June 4, 2009
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)