Battles with the Pulse Ox

Madeleine had another good weekend-- she was a bit slow/lethargic this weekend and we're chalking it up to a growth weekend as well as her reaction to the gloomy DC weather-- its been raining for about 3 days now and its forecast to continue until next Sunday. Ugh.

For the past few weeks, we've been having some trouble with Madeleine's oxygen saturation rate when she first falls asleep. During the day, the nurses only spot check her sat rate as it is impossible to keep the monitor on Madeleine when she's awake and moving. She kicks the thing off and loves playing with it as it has a bright red light when turned on. For a kid that can put her foot in her mouth (literally), the pulse ox is just too tempting-- she pulls it off in less than 3 seconds when awake. When she falls asleep, we usually take her into the crib and set her up for the night which includes turning on the pulse ox and for the past two weeks, we've seen extremely low sat rates-- in the 70s when we put her down. (Healthly folks are always above 95 and we don't like to see Madeleine below 90.) What's strange is that when the machine reads in the 70s, Madeleine looks fine. We've been trained to "look at the child" but we've also been trained that the machines can pick up data that the naked eye can't see. Inevitably, Kirsten and I have worked frantically each night to improve Madeleine's sat rates-- we suction, we turn her on her side, we increase the oxygen, when especially desperate-- we change the trach, we hold and rock her, and many times we bicker with each other-- its just kinda how we react when nervous and don't know what to do.

Finally, Kirsten took Madeleine to the pulmonary clinic on Friday-- we had a schedule visit with the GI clinic and we learned that the pulse ox machine wasn't reading correctly. Our home machine was reading in the low 80s when they arrived at the hospital but the hospital monitor showed a perfect 100 sat rate. I can't tell you how frustrating that is to know that we've spent so many nights worrying about something that looks to be a machine error. We ended up getting a new machine over the weekend and while it still isn't perfect, its giving us better readings.

The other two things we focused on this weekend is resolving Madeleine's runny nose issues and also discussing what she's going to look like without her "tape mustache." We're less than two weeks away from surgery to remove the NJ tube and replace with the G tube and we can't wait to see her without the tape on her face. In her 13 months alive, we've only seen her without tape at her birth and at the random times when she pulls out her tube. (FYI-- since posting the survey, we haven't had to go back to the hospital for a new tube... keep your fingers crossed that the streak remains intact for the next 11 days.) The runny nose is a bit more problematic-- we have been concerned that Madeleine was fighting a cold for the past few weeks as she's had a runny nose for weeks but every test we've done has come back negative. The doctors don't think Madeleine could have full blown allergies-- it takes a few years to develop allergies-- but right now we're chalking the extra snot up to "seasonal sensitivities." I'm not sure how this differs from allergies-- I'm sure there is some clinical difference-- but the end result is that Madeleine has a snotty nose and needs to be suctioned quite a bit.

As far as life for Kirsten and I, we're doing really well. I've completed my first week in my new job and so far, everything is great. I'm doing some pretty cool work (google 287(g) to find out about the program I'm working on-- note: its fairly controversial) and the folks I work with are really great. Kirsten continues to do great at her job-- wouldn't expect any less-- and we're even starting to talk about taking a vacation at the end of the summer/early fall. Its been so long since we even discussed something like that, it almost seems taboo...

alright-- gotta run. have a great week and if in DC, try to stay dry.

That's all for right now.