Today was such a rough day. We had appointments at 8 a.m. with pulmonology and as we were getting the girls into their carseats, Sydney’s oxygen level started dropping pretty significantly. We rolled some blankets underneath her shoulderbones to keep her airway as open as possible and made it to Riley 30 minutes late. Dr. A. decided that even though the girls both have large amounts of saliva that are causing them to choke, he didn’t want to prescribe an anti-secretion medicine. This was kind of hard for me because they can no longer swallow their own spit and we’re having to continually suction them, which they hate.<\/p>\n
After the appointment, I told our hospice nurse that I didn’t think car seats were a very safe option for us and asked if we could get ambulance transport to and from appointments. She agreed so we were taken from Riley to C. North for monthly Synagis shots. It took forever, but we finally got them and got home. It is so much work transporting two girlies with all of their monitors, oxygen and machines. They are now on oxygen full-time and when we take them off even just to change diapers or clothes, they drop to the mid-80s range.<\/p>\n
When we got home, Sydney had developed a bit of a fever from the shot so we gave her some Tylenol and they were both fussy for a good 3 hours. I know some moms might think 3 hours isn’t that bad, but I used to be very lucky that they generally were not fussy babies so it is hard on me to hear them be so uncomfortable.<\/p>\n
Dr. D. from developmental pediatrics called a bit ago to see if we would be interested in admitting the girls to Riley full-time. I’m just not sure this is the best option for us…health-wise, I don’t know that it would make much of a difference for the girls. They have pretty much all of the machinery they need here. Also, I think it would definitely take a toll on them and us physically and emotionally.<\/p>\n
Jake and I have started to notice significant deterioration in both girlies. Just 3 weeks ago when Sydney was in the hospital and on the O2 monitors, she was able to hold steady at 96-100 percent oxygen saturation, and now she can barely stay in the 90s. I’m just so sad that it is all happening so quickly…much more quickly than I expected. It’s also sad because the girls are so much more tired because their bodies are working so hard. Their average heartrate while awake is between 160 and 200…it is taking such a toll on them.<\/p>\n","protected":false},"excerpt":{"rendered":"
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