So once again not much is going on in the Delgado household. We finally got the first dose of the H1N1 vaccine for Juliana and Omar is scheduled to get his this week. Fortunately everyone has been healthy outside of the normal postnasal drip which we are treating with the occasional dose of Mucinex.
It is getting harder to get things done now that Juliana is growing. Lately she hasn't been into taking naps during the day and has begun crying for attention. We think Nana has been spoiling her by holding her often during the day while I am at work. Unfortunately I just don't have enough time to hold her all day, but I have managed to skip out on a few chores to give her a little extra cuddle time. It still is wonderful to hear her cry. I think of all the months of silence even after extubation and it just brings so much joy to my heart to hear her voice. We are getting more sounds out of her with some coaching. She says "ahhhh" and continues to blow raspberries.
This week we will be seeing a new ENT to discuss the fluid in her ears. It's just not going away and tubes are most likely the next step. Usually this procedure isn't a big deal, but for Juliana it would require general anesthesia which in turn means intubation. The problem with intubation is that we are placing a foreign object down her airway and into her lungs which can possibly introduce bacteria that can lead to pneumonia. Sounds like a shot a in the dark but considering her last minor procedure that was completed and required intubation landed her in the ICU with bacterial pneumonia, that is not a shot I am willing to take. Her pulmonologist is on the same page so we are seeking other alternatives to general anesthesia to get the tubes in place.
We had another uneventful trip to Boston (no phone calls on the way home). They made a few adjustments on her TPN but overall everything is looking good. She continues to grow at her own pace and is now 7 kilos (or approx. 15 1/2 lbs.) She has not made it on the charts yet for height and weight but her head circumference is about the 5th percentile for her adjusted age. I just have to hope that what they say is true about big heads. Fortunately for Juliana we never put anything over her head for two reasons. One it's much easier to run her central line out the top of her clothes and away from diapers and ostomy bags and two she gets so mad if you even try.
The prayers are working so keep 'em coming.