I know it's been almost a month since I posted. I think that's the longest gap I've had! Tax season is in full swing and things have been very busy for the whole family. Lyla has had a bad cold for several weeks, but it hasn't stopped her from doing a great job at school and therapy. I had a conference with Ms. Diane her preschool teacher last week and she said Lyla is a great student. She is a social butterly at school and uses her words to tell everyone what she is thinking, especially when what she's thinking is, "Don't take my stuff!"
OT has been going great. Not only is Lyla very happy for her solo sessions with Kathy (we stay in the waiting room now), she is doing a great job with her goals. Last week she put on her swimsuit with very little help and built a whole potato head just with lefty!
She also started pool therapy for PT again. She jumped right in to the pool with Amanda and did a great job. Se was blowing bubbles in the pool, standing on one foot, even balancing on a kick board and doing sit-ups in the water. Amanda said she looked great. So proud of my little athlete!
I was in New Orleans over the weekend for HIMSS, a healthcare technology conference. It was interesting (hotel in a bad neighborhood, couldn't drink the water, ate raw oysters), but I was very anxious to get home and see how Lyla was doing with her cold, especially since we were supposed to go to the neuro- onc clinic yesterday.
Unfortunately, Lyla's oxygen sats we're only in the 70's when we got to the hospital. They sent us to the ER and we found out she has some pretty nasty pneumonia. They also said her left diaphragm is sitting quite high in the X-ray, an indication that it may not be functioning properly. After some blood work, we found out that Lyla's got a lot of bicarbonate in her body. Because she has so much carbon dioxide in her body (which is acidic), her body is making extra bicarbonate (a base) to neutralize her body's pH. The pulmonologist said that's an indication that Lyla has been breathing at really low saturation for a long time -- longer even than she has had the cold.
Today they gave her a test and her CO2 is at 93. That means she is not breathing it out well enough. I'm anxious for her to wake up and get her lungs moving a little more to get rid of the gases and the junk in there. Thankfully she has slept through the night like a champ. After hardly sleeping for three days at home, she needs the rest -- she's still in a deep sleep even after 13 hours.
She's got a big day today. They have told us she will have a fluoroscopy today to see if her left side diaphragm is working, and if it is, how it is working in relationship to her right. We will be in the hospital at least into the weekend if not through it and into next week. Lyla can't go home until she can keep her O2 says up without oxygen and if there are diaphragm issues, we may be here even longer. Right now she is holding at 98% on three liters of O2. W're thinking she may need even less once she's awake.
Little lady is once again fighting the good fight. I'm not excited to be living at the hospital again. Things haven't changed much since we were on 4200 two years ago. At least we know now why Lyla's lips have been turning blue. And we're in the right place for her to get the care and oxygen she needs. Keep her in your thoughts! We love our little girl!
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