Care and maintenance

I guess it is what you would expect with an infant but we have very long days these days.

In addition to all of the normal baby stuff that we do, we have the added duties to take care of all of Ellie's hardware every day.

Her G-tube is leaky from having a tube that was too tall in there for a week or so. It opened up the beautiful little hole (like a pierced ear) and now the fluid leaks around it and oaks the dressings and/or her clothes or ostomy. It comes with the territory and when it leaks it needs to be cleaned and redressed. Kst days this happens two or three times.

Her ostomy is full of cotton balls to absorb the liquid that comes out. To keep it from over saturating, it needs changing every few hours. Tweezers and new balls. Feed her and get ready to replace them.....

Finally, her central line dressing is a constant source of anxiety for us. That is the high stakes gamble for us and we have been fortunate so far that the clear window/dressing has stayed in place this week. We put on our masks last night for the weekly dressing change and sweated our way through our first dressing change. A success.

In short, if we aren't doing something, we are cleaning up from it, getting ready for the next round or carefully calculating what went in, what came out (we weigh everything) and seeing whether it it within acceptable limits. It gets easier, and we can do the easy stuff without much thought but the more complicated stuff is more taxing on us.

One of the big tasks of the day is setting up her TPN. We are getting good at this each night. In the beginning it took a hour to get it set up and running. Today Abby pulled it off in under 20 minutes from start to hook up. Lots of parts to connect and pumps to set up, but we get it done. The toughest part is to remember to take the PN out of the fridge four hours in advance of her hook up. It needs to be room temperature or it will chill her when it goes in. That would be bad.

When Abby resigned her job at the Aquarium, we said that Ellie would be a full-time job. That is turning out to be a fact and then some.

we are hopeful that daytime home nursing will come on line in January and will be here to lend a hand. It would be nice to have a relief pitcher for the hard stuff every now and then.

But it is all worth it for our girl who smiles and sticks her tongue out through almost all of it, except the central line dressing changes. Those aren't fun for anyone.