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A bit on edge earlier this week

June 13, 2008 by Bill Strong
On Sunday night and Monday Gwendolyn was running a fever off and on. She also seemed a bit fussy, which is very unusual for her, and we noticed that her secretions were a bit thicker than normal. On Monday night she was sleeping on the couch next to Victoria and me and her oxygen stats dropped twice for short periods of time into the low 90's% but she looked and seemed fine. We put her on a small amount of oxygen and her stats stabilized. When the night nurse arrived that night she was listening to Gwendolyn's lungs and noticed that her lower right lobe didn't sound like it was moving air as freely as the left. This was definitely concerning given all of the other facts and was definitely a change from that morning when I last listened to her lungs. Victoria started our normal respiratory treatment routine immediately and we decided to give her Pulmozyme, a nebulizer treatment that helps break up sticky secretions, in addition to her normal Albuterol. Gwendolyn didn't seem distressed at all, actually she seemed to love all the midnight attention smile, so Victoria and I decided to increase her oxygen through the night, increase her respiratory treatments, and watch her closely. Victoria did another treatment at 2am and by morning when I got up her right lung sounded more normal. I took her off of the oxygen and she hasn't been back on it since.

After talking with our hospice RN and our pediatrician the next day we think that Gwendolyn may have been or may be fighting off a little bug. These episodes are very common with SMA1 babies but our experience with Gwendolyn is that they can quickly escalate into much bigger issues so increasing her respiratory treatments and acting quickly are so important.

Besides that episode on Monday night Gwendolyn has had a great week. She's learned to do kiss sounds, which Victoria has been teaching her for months, and yesterday she was off of her bi-pap for 7 hours -- which we think may be the most since she started using the bi-pap back in late April.

We're looking forward to having Victoria's dad, my mom, my sister, and my brother-in-law Richard in town for a Father's Day BBQ this weekend.


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