Lungs and Love and Atelectasis

It is Monday morning, February 27th 2012.  Today I had to take Daniel for a stat x ray to check his lungs. He was having "crackles" this weekend and strange breath sounds.  So off I went in a mad rush to get the x ray done and try to get to work at my 4 hour shift at the deli.  Life is always a mad rush for me.  The x ray doctor said Daniel had a Left lung ATELECTASIS.  That is my word for the day. Atelectasis. So I looked it up, because Daniel has had it before.  Kids with progressive scoliosis start to have more compromised respiratory issues.  And here we go.  All I want is to keep this kid healthy so he can make it to his scoliosis surgery...which will resolve the problem of the dreaded "Atelectasis".....  


I have this vision of Daniel being able to hold himself up straight without curving over to the left. His curve is so awful to look at. I miss his straight spine, which was there until about a year or two ago.




Symptoms
If atelectasis involves just a small number of alveoli, then the symptoms may not even be detectable, but if it grows rapidly then it may cause an acute condition of 'shortage of breath'. The level of oxygen saturation in people suffering from this disorder is also less. The loss of deep breathing also causes the heartbeat rate to increase. If atelectasis has been caused because of some other disorder that the patient is suffering from, then the symptoms will be similar to those of the existing ailment. It is very likely that a patient suffering from this condition will lose his energy and stamina. Cough, fever and pleural effusion are some other significant symptoms of a patient suffering from atelectasis. A very unlikely symptom, in cases of people suffering from an acute condition of atelectasis, is a bluish skin. This happens because of reduced oxygen level in the skin. If atelectasis is not treated and continues for a prolonged time then it may result in lung infection




I'm feeling alittle bit sad today.....because sometimes everything just seems gigantic and insurmountable and I want to curl up and give out a giant cry. But I go forward, and I keep smiling and I keep trying to provide the best quality of life that I can for this child.   Because I AM THE CREATOR of what he knows in his life.

And that is a big responsibility...  and a labor of great gigantic love.

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Gaining Weight and thoughts for Sunday

Daniel is only 64 pounds at the age of 14.  We are on a tough mission to gain about 10 pounds and get him in a better physical state to be able to endure scoliosis surgery.  He honestly is very very thin, but a g tube fed child who has limited ability to tolerate large amounts of food in his stomach due to severe Gastrointestinal Reflux...is a hard child to fatten up.  Today is Sunday and John took the boys to the park for some sun, a walk, throw some balls around, etc.  I love to see Daniel just enjoying a day without any illness....but I am counting the days since our last clear x ray. (Wednesday February 15, 2010)    SO...its been 4 days officially pneumonia free.  We need to go 4 to 6 weeks.  Wish us luck on that challenge. Daniel chokes on his own saliva.  It doesn't appear that the botox injections given to control the saliva are making any kind of a difference.

But for today, I will be grateful for a healthy and smiling Daniel.  He is showing signs of being irritable on and off.....   BUT who wouldn't be if their spine was 50 degrees permanently curved sideways.

There are some days when I have a reprise from the intensity of my stress...today was one of them. I enjoyed time at the mall, and have been prom dress shopping with Sarah...   A big gift to me...is just some normal kind of days.

The Road to Spinal Fusion Surgery...

Daniel had a consultation with Dr. Brian Smith at Yale last week. He is being prepared to have have spinal surgery to correct his ever worsening scoliosis.  This will be no easy task. The boy is 14 years old and only weighs 64 pounds.  He eats ONLY via g tube...and therefore his nutrition has to be adjusted.  In addition, he needs to be pneumonia free for 4 to 6 weeks.   I'm having nightmares and awful visions of the post op recovery process. There are many risks for Daniel...they made that clear to me.   So over the next few months I will be talking about our road to surgery for the boy who is so badly crooked and bent to his left side.  Sigh.  I don't know how to process this.  Blogging helps...  to settle the anxiety.   Its a HUGE surgery..over 8 hours long...........