Friday, November 12, 2010

Work week

Well, we made it through almost a whole work week with Magnus at home on oxygen and nobody to take care of him except his parents! I have several nanny interviews lined up for us on Sunday, so I really hope we won't have to do this too much longer, because I am totally exhausted. Missing work is not an option for me, and Iggy has also been trying to work as much as possible, so basically we are all just sleeping less and trying to be as efficient as possible (on top of everything else, I have a job interview next week for which I am supposed to prepare a 15-minute presentation).

I also survived my first solo outing with Magnus and his oxygen tank. We had a trip to the clinic this afternoon for him to get a flu shot and to see his GI doctors. I was nervous about being able to steer both the stroller and the oxygen cart, but it wasn't really too bad, although I did run over one guy's foot with the oxygen. I was also kind of nervous on the drive over, too; when the guy from Apria dropped off the portable tanks, he told us that if we took them in the car they should always go in the back seat, and never the front seat or the trunk. You know, because then it's less likely to explode if you get in an accident. My mind wandered to those "BABY ON BOARD" signs, and I fantasized about making a "HIGHLY FLAMMABLE BABY ON BOARD" sign for our car. But we didn't get in an accident, and we didn't blow up.

Iggy took Magnus out for a walk with his oxygen on Thursday and said that people stared and he felt self-conscious. When I took Magnus over to say goodbye to his nanny on Wednesday morning, I decided to just take his cannula off, because we were only going for a short visit, but I left the stickers on his face that hold the cannula in place and even that garnered comments. "Your baby scratches his face, huh?" one guy said to me. Anyway, at UCSF it wasn't really an issue, since there are tons of people walking around with various medical equipment and whatnot.

Magnus has been adjusting pretty well to being on the oxygen. I'd say our biggest problem is the fact that the adhesives we use to hold his cannula in place have been giving him a pretty bad rash, despite the fact that we attached the stickers to a more hypoallergenic type of bandage. But there's no such thing as a hypoallergenic adhesive for him, apparently. I hope in time his body will adjust to it, because the rash is pretty gnarly, and I feel terrible when I have to change the bandages because it looks really painful. But other than that, it doesn't seem to bother him too much, and as much as I hate to admit it, I think it does seem to give him more energy. It will probably help with his weight gain, too.


  1. Aw... you know Magnus at his age thinks anything he's wearing is perfectly normal, so I wouldn't worry about it. I'm sure he's fine with it, except for possible discomfort -- that's all I'd be concerned about.


  2. I think someone asked you this in a previous post, but can't you get the oxygen in the smaller, more portable tanks that you can sling over your shoulder when you go out?

  3. Just catching up on Magnus' recent trials and tribulations, Jen; I have taken a break from the online world of HLHS lately as it is recently too overwhelming for some strange reason. I, too, had a terribly unsupportive perinatologist who delivered Cora's diagnosis and was pushing us to make a rash decision. Oh the difference a year makes! But it does not change the fact that you have been working tirelessly for a child who has faced many obstacles, and it is exhausting. Wishing you and your family a Happy Thanksgiving. I admire the fortitude and determination of both you and Iggy--it comes through so clearly in your anectdotal means of recounting of life with a young family. Thinking of you all.

    Hannah, mom to Cora, HLHS and almost a year