1 to 6.
That's how long Ella was up Thursday night; from 1am to 6am.
She has a cough. A simple cough...for you and me maybe, but not for a person suffering from SMA.
This poor little kid. She was coughing the whole time. Well, trying to cough.
Drawing in a breath strong enough to generate an exhale that will produce a cough capable of clearing her upper respiratory tubes is not something Ella can do. It's torture. And not just for the one who is suffering.
She was almost gasping for a deep breath. A breath that couldn't be there.
For close to 45 minutes Michael, in the wee hours of the morning, had Ella down in the family room performing chest PT (in an attempt to loosen up the phlegm in her chest) enough so her weak cough could have a better chance to expel properly. She lay on his lap, tummy down, head and upper body at a slight downward angle, and patiently let the chest PT (which is done on the chest, sides and back) do its work. She graciously allowed Michael to turn her on her sides and her back to complete the therapy.
When it was completed she wanted to watch TV. Michael put in her favorite Sesame Street video and sat her in her special chair in front of the screen. During the video she had a few good coughs and seemed to clear out some of the upper respiratory tubes. She laughed a bit and sang along with the songs.
Michael brought her into bed with us around 4 am. She tossed and turned, whimpering, until around 6 am, when Lindsay brought her back to her crib. Luckily she was able to sleep for a few hours.
We remembered what Dr. Lester (the pulmonary specialist) said... if she starts to develop a cough, we should put her on an antibiotic to try to prevent it from turning into something more serious.
So Michael took Ella to the pediatrician this morning (Dr. Murphy is out of town, so she saw Dr. Steinken). Dr. Steinken went ahead and gave her the prescription and told Michael the warning signs to look for that would indicate that she's getting worse (and that if she develops any of those symptoms, we need to bring her in immediately).
Dr. Steinken then asked Michael how WE (as her parents) were doing.
Michael replied, "Fine" (an automatic response these days). Then Dr. Steinken went on to say that with the diagnosis being so new, people who respond by saying fine are either in denial or hiding the truth. Hmmm...
He was right.
We remembered what Dr. Lester (the pulmonary specialist) said... if she starts to develop a cough, we should put her on an antibiotic to try to prevent it from turning into something more serious.
So Michael took Ella to the pediatrician this morning (Dr. Murphy is out of town, so she saw Dr. Steinken). Dr. Steinken went ahead and gave her the prescription and told Michael the warning signs to look for that would indicate that she's getting worse (and that if she develops any of those symptoms, we need to bring her in immediately).
Dr. Steinken then asked Michael how WE (as her parents) were doing.
Michael replied, "Fine" (an automatic response these days). Then Dr. Steinken went on to say that with the diagnosis being so new, people who respond by saying fine are either in denial or hiding the truth. Hmmm...
He was right.
The diagnosis still IS so new. It sometimes feels like our entire lives have been about SMA, but in reality, it hasn't even been 5 months. Wow. How it has consumed our world.
That comment, however, was good to hear. So much of the time we feel like we should have moved on by now; accepted this awful disease and gotten on with our life.
But we're far from acceptance. Very far.
That comment, however, was good to hear. So much of the time we feel like we should have moved on by now; accepted this awful disease and gotten on with our life.
But we're far from acceptance. Very far.
In an earlier post we spoke of the "phases" that go with life's events (DABDA) and we are finding out that often times the phases may overlap, producing a mix of emotions that sometimes may be at odds with each other. It's a mess. Life is messy.
Our wise associate pastor reminded us recently of the messiness of life; providing us yet again with something to hold on to. Here we stand again, at the crossroads of SMA and our life...seeking to do the best we can to keep our Squishy healthy.
This whole "SMA ride" has been just that... a very strenuous ride of ups and downs. And then more ups and downs.
Today we are down. Very down.
But hopefully Ella's cough will be minor for her and not develop into anything more serious.
And then hopefully, at some point, we'll go back up.
Today we are down. Very down.
But hopefully Ella's cough will be minor for her and not develop into anything more serious.
And then hopefully, at some point, we'll go back up.
